I decided to start this blog to tell the story of life (mine and that of others) living with prostate cancer. In my case Stage 4 (terminal) prostate cancer.
This is the first post on my new blog. I’m just getting this new blog going, so stay tuned for more. Subscribe below to get notified when I post new updates.
I’m very much in favour of screening for prostate cancer, as you’d expect given that I was diagnosed with the incurable variety at age 60 and given a worst-case prognosis of two years.
Being told that you’ve got cancer is devastating, being told it was incurable is indescribable. Then finding out that I’d probably had the cancer developing for 10 years, because it had spread so far, came as a real shock that turned to anger when I found out that I’d been entitled to a simple PSA blood test from age 50, that would almost certainly have detected my cancer early when it was curable if I’d had that test annually, but I knew nothing about my right to the test.
Why don’t we already have a screening programme? In 2012 the US Preventive Task Force concluded that screening did more harm than good. In a nutshell, men were being told that they had low grade prostate cancer and then going on to have trans rectal biopsies, risking sepsis and death, before having radical treatments, including prostatectomies or radiotherapy, that they didn’t need but led to harms including incontinence and impotence.
This is entirely anecdotal and unscientific, but I know quite a few men who’ve ended up with serious side effects from radical treatment that may not have been necessary but was the norm when they were treated, who are still happy that they got rid of the cancer and yes, I understand that being rid of the cancer is emotive and yes, I know that some men do have treatment regret because they’ve been harmed.
The USPTF recommendations left us with a situation where men in the high risk groups, black men and men with a family history aged over 45 and other men over 50, were entitled to a test on request but needed to be counselled by a GP on the pro’s and con’s of being tested thus were being said to be making an informed decision to be tested. The major issues with this are that, firstly men needed to be aware of their right to be tested and secondly some GP’s flatly refused to follow their guidelines on testing asymptomatic men. This of course created significant health care inequalities as men, for example in areas of socioeconomic deprivation, weren’t aware of their right and even for those who were aware, some GP’s acted as a barrier to testing thus denying men the opportunity to make an informed decision.
Health care inequalities, including not having the knowledge about the need to get tested or being refused a test, has resulted in Scotland having rates of metastatic incurable diagnoses as high as 35% of all men diagnosed, nearly three times the rate in other areas of the UK. This is not acceptable in any way.
Why is screening now being re-considered? Improvements in the diagnostic pathway have substantially reduced harms. Historically a man with a high PSA reading would have gone straight to trans rectal biopsy and then potentially radical treatments that might have caused harm. The current improved pathway leads to men with a high PSA having a multi parametric MRI scan giving clinicians a much better idea what is going on in the prostate. Then men who had suspect areas in the prostate would have a trans perineal biopsy with lower risk of infection. Men ultimately diagnosed with low grade, low risk prostate cancer are encouraged to avoid radical treatment and go on to active surveillance where they are regularly monitored to assess the progress, or lack of, of their cancer. Inevitably, some men find this a real challenge and the urge to be rid of the cancer is a strong one.
Does this mean that harms have been reduced enough to justify a screening programme? Regrettably not. The call is for even greater evidence of reduction of harm before population screening will be considered and that evidence is expected to be delivered by the TRANSFORM trial which is the biggest ever screening trial and will cost £42m. We may see some interim output from TRANSFORM in 2029, given that the trial hasn’t started recruiting yet, but we may have to wait 10-15 years for full confirmation.
Why is that an issue? In the UK alone 12,000 men are dying every year of prostate cancer. By 2029 another 36,000 lives will have been lost. If we wait 10-15 years that equates to 120-180,000 lives lost and that isn’t acceptable. Each of those lives is a family ripped apart. A Husband, Father, Grandad, Brother lost.
Is there any evidence now to support some form of screening? The National Prostate Cancer Audit (NPCA) suggested that 7% of men with low grade prostate cancer went on to have radical treatment and this seems supportive of a relatively low percentage of men being harmed. Alarmingly the NPCA also suggested that far too many men with metastatic prostate cancer are receiving substandard treatment thus potentially being significantly harmed!
A European wide screening study, The European Randomized Study of Screening for Prostate Cancer (ERSPC) recently reported the results of 23 years of studying screening with a screening arm and a none screening arm and a total of over 162,000 participants. The headlines are a 13% reduction in prostate cancer mortality in the screening group, one death prevented for every 456 men invited for screening, risk of advanced cancer down by 34%, benefit continues to rise over time as the harm/benefit ratio improves.
Some critics say that, in the ERSPC trial, whilst the screening group showed a significant reduction in prostate cancer mortality (the original aim of the study) there was no statistically significant difference in all-cause mortality between the screening and control groups. This means screening successfully lowered deaths from prostate cancer but did not significantly impact the total number of deaths from all causes combined, such as heart disease, stroke, or other cancers. Is that a surprise though given that men recruited to the study were aged 50-70? A 70 year old recruited 23 years would now be 93 if still alive!
The head of that trial said “Working in population based screening, I like PSA a lot. It’s cheap, it’s objective, it’s fully developed. It is a perfect first screening test. It can be applied without too much harm. People are not afraid to get it. So, for me, it is a very nice test”
A USA based Urologic Oncologist and Researcher focussed on prostate cancer said pretty much the same. Talking about ERSPC he said “PSA is cheap, non invasive and very sensitive. The decision to biopsy is different now than 23 years ago. Use of AS is much higher now, a cancer diagnosis doesn’t equate to treatment. We start screening earlier and stop screening earlier now. We have better planning tools, greater use of robotics and developing focal therapies. People fail to realise that it wasn’t until 15 years ago we started to develop an effective way to treat metastatic prostate cancer. If ERSPC was done now it would demonstrate even less harm and at least similar benefit.”
His next comment was rather controversial as he said “Is it truly reasonable to conduct massive RCT’s when the answer is right in front of us“
He’s clearly an advocate for using PSA testing with a risk based approach but there are many people who disagree strongly with him and indeed would be said to be poles apart.
Is this enough for a population wide screening programme? This is a decision that is currently being considered by the National Screening Committee (NSC) and a decision is expected by the end of 2025. On balance it seems unlikely that the NSC will recommend a full screening programme, particularly given that the TRANSFORM trial is such a huge priority.
Are there any other alternatives? Prostate Cancer Research (PCR) and Prostate Cancer UK (PCUK) have been calling for a risk based screening programme for men at greatest risk, black men over 45 who have twice the risk of white men, men over 45 with a family history who have 2.5 times the risk of other men and men with the BRCA gene mutation. I think that this is a possibility as it would seem politically expedient given that the All Party Parliamentary Group on Prostate Cancer and Wes Streeting are supportive and the evidence, in my humble opinion has swung in favour of this direction of travel. PCR’s report “Prostate Cancer Screening: The Impact on the NHS” suggests that a limited cohort screening programme would cost c. £25m, 0.01% of the NHS budget, £18 per man. This compares favourably with other screening programmes and the benefits would certainly generate a return on investment and save lives.
In my 8.5 years of living with advanced prostate cancer I’ve spoken extensively about the reality of the harm of late diagnosis and it’s always seemed to me to be totally overlooked when considering the harms Vs the benefits of a screening programme. I wrote about this for Tackle Prostate Cancer in this article https://tackleprostate.org/harms-of-late-prostate-cancer-diagnosis/
Conclusion – many people believe that the evidence now supports risk based screening but that it’s not right to move to population screening yet. Testing those at greatest risk is an important start without significant cost and without adding significant pressure on the NHS. Hopefully the NSC will agree and then TRANSFORM will produce evidence quickly that ensures no man is left behind. Targeted screening wouldn’t have led to my cancer being diagnosed earlier so we also need to think about how people like me would be diagnosed earlier and a good start would be making sure that some GP’s aren’t barriers to informed choice testing and even more importantly changing GP guidelines to encourage them to proactively engage with asymptomatic men on testing which they are currently advised against doing.
Cancer patients should be wrapped up in cotton wool, lie on the sofa and wait to die right? Wrong, so very very wrong! Thankfully the days when health care professionals discouraged cancer patients from exercising and their families wrapped them in cotton wool are a thing of the past and many cancer patients are still able to do remarkable things like walk 588 miles over 36 days or complete 4 Marathon Des Sables despite living with terminal cancer.
As an ambassador for 5K Your Way, an initiative from the Move Charity to encourage those impacted by cancer to get together at certain parkruns across the UK on the final Saturday of the month and do 5k their way and then become a peer to peer support group over coffee and cake, as well as being a patient representative for Prehab4Cancer in Greater Manchester, I’ve built up a fair bit of knowledge about the value of exercise for those living with and beyond cancer. I’d go as far as saying that it’s helped me cope better with my cancer and its treatment side effects.
Given this, I’ve very much tried to walk the walk and not just talk the talk and now that I’m on the mend after a knee replacement and 6 months of pretty poor health with lots of niggling issues I’m back to running 3 or 4 times per week, getting out on the bike from time to time and doing a weights class.
Surely you can take a break from exercise when you’re on holiday? Well, no, not really. Movement becomes part of your life and, in any event, we’ve always preferred active holidays rather than just lying on a sun bed.
In January 2025 I was 8 months post knee replacement and happy with the progress so we took the plunge and booked a holiday to Slovenia that would include guided and unguided hikes for 10 days of the 14.
Then disaster struck. Five cold viruses in quick succession and pollen induced asthma, a new one for me, left me breathless and struggling to walk uphill or upstairs. I reached the point where I was seriously worried about going hiking in the alps! Thankfully a high dose of steroids and a steroid inhaler cleared things up a bit and I was feeling better so we went off to the Scottish Borders for a long weekend of hiking and that went well and left me feeling more positive about Slovenia.
Our first three nights were spent exploring the beautiful capital Ljubljana. A nice steady 20,000 steps and over 9 miles per day.
Of course, there were a few stops to “re-hydrate” with a much-needed cold beer which was very welcome in the 30c temperatures.
Next, we caught the public bus to Lake Bled where we were to spend 5 nights and do 4 days of hiking including 2 guided walks.
When we opened the curtains of our lake view room in the hotel, the sheer beauty took our breath away. Lake Bled is simply stunning and we spent our first day walking round the lake and exploring the town.
The first hike was guided and took us to Kupljenik Viewpoint with our local guide Liza from whom we learnt so much that we wouldn’t have on our own. The hike was a mere 10 miles and 553m of elevation gain but the views were stunning.
Hike 2 was self-guided through the stunning Vintgar Gorge with a lovely walk, via a couple of local bars, back to Bled.
Hike 3 was another self-guided walk and a little easier.
Hike 4 would be with Liza and a fair bit more challenging through Mostnica Gorge and Lake Bohinj, another stunning lake that’s very popular with families and the most incredible colour. One stand out thing in all the hikes was how incredibly clear the waters in the rivers and lakes are. You could actually see trout in the lakes. This hike turned out to be 9.7 miles and over 400m of elevation gain.
After 4 days of tough hiking, I was starting to feel the pace with fatigue from my treatment so was grateful of an easier day as we transferred deeper into the mountains to the lovely town of Kranska Gora. A day to familiarise ourselves with the town and it’s surrounds but still 18,000 steps and over 8 miles walking.
Hike 5 was to be the most epic of the holiday and self-guided. It was also the toughest hike I’ve ever done. The aim was to get to Tromeja where three countries, Slovenia, Italy and Austria converge but to get there was a 7 mile hike gaining 755m of elevation.
The first section was challenging enough but the final section on a zig zag path was brutal. I kept saying to Tracey that I couldn’t go on and she said to take a rest and then try the next zig and then next zag and very slowly, step by ever challenging step, the tress opened out to the most incredible vista. It was worth every single step!
The views at the summit were stunning.
We dropped down about 100m in height and 1km in distance to a mountain hut for lunch, and “re-hydration”, in Austria. It’s not every day you have breakfast in Slovenia and hike to Austria for lunch!
Where three countries meet.
Hike 6 was another toughie but nothing like the previous day. Hiking up through the pine forest meant it was a bit cooler, much needed given the high temperatures, and then after three hours we walked into a high alpine meadow to see yet another stunning view.
Hike 7 was an easier day with a hike to Slap (waterfall) Pericnik and back before getting the tourist bus to get deep into the mountains with a view of the north face of Triglav, Slovenia’s highest mountain, for a hearty lunch of goulash and then back down to the village. A mere 7 miles and 300m of elevation gain.
Our final hike was Krnica Valley with Liza and this was a very gentle 9 mile and 367m elevation trip for coffee at a mountain hut deep into the mountains but high into the mountains along a crystal clear river.
Re-hydrating whilst waiting for pizza.
Our penultimate day was to head back to Ljubljana for a very early flight home the following day.
And a wee beer at the local craft beer bar.
Amazingly we managed over 300,000 steps and 140 miles of movement over the holiday and the hikes averaged 8 miles per day with a total elevation gain of 3,334 metres over the 8 hikes!
I’m very grateful that I’m one of the lucky ones that can still do stuff like this and yes, even on holiday, movement matters!
We have to keep on keeping on, KOKO my friends.
The first question I asked my oncologist wasn’t “How long have I got to live?” It was “Will I still be able to run?” which shows just how important running was in my life. When he said “Once the stress fractures (my runners “groin strain” was actually stress fractures of the pelvis where the cancer had eaten into the bone) have healed, yes and you must but you’ll be a lot slower and find it a lot tougher” you can imagine the sense of relief!
To stay involved with my running club, that I had Co-founded, I bought a hybrid bike so that I could go on runs with them and still be a part of it and a couple of months later I started back jogging very slowly and built back up to running 4 times per week.
The oncologist was of course right. Having your male hormone removed, aka chemical castration, leads to weight gain, muscle loss and loss of bone density. None of those great for runners but I stuck at it.
A year post diagnosis, I ran the London marathon achieving a massive personal worst in my 20th and last marathon but raising £13,000 for Prostate Cancer UK meaning that it’s the marathon I’m most proud of. I’d been plagued by awful cancer treatment induced fatigue throughout the training so just to get to the start line was a challenge but finishing the hottest London marathon on record, whilst having hot sweats and hot flushes, was no mean feat, a marathon completed despite huge adversity.
I went on to complete a 100km ultra marathon and then to run at least 5km per day for 365 straight days amongst other daft challenges.
Fair to say that incurable cancer never stopped me running and was never going to!
Then disaster struck when I tore my medial meniscus cartilage and discovered serious bone wear either side of it. After a minor surgery to try and sort the cartilage out it was obvious that I was going to need a knee replacement.
After several months of hobbling around and, in the end, being unable to walk more than 200m, the knee got replaced.
Then rehab started and I took it really seriously, doing all the exercises and using some high tech equipment to speed recovery. After 4 months I was allowed to start jogging by the physio. I’d asked the surgeon if I could run after the operation and he told me I shouldn’t because I’d need it replacing again before I died. When I reminded him that I had stage 4 cancer and that wasn’t going to be a problem he just didn’t get my dark humour!
2 minutes jog, two minutes walk x 5 was all I was allowed. Then stepping up the jog section by one minute per week before finally getting back to attempting to jog 5km at parkrun. Times were ridiculously slow. I’d not been able to do weight bearing exercise for 15 months and had totally lost my cardio vascular fitness as well as gaining weight but I was determined to get back to as good a level as I could.
Then disaster struck! A really bad cold just after Christmas wiped me out and then 4 more cold viruses up to June 2025 meant every time I built up I was knocked down again. Every time I tried to run I ran out of breath after 200m and could barely manage 2km of jog/walk. I realised that this just wasn’t right. After running for many years I’d learnt so much about my body that I just knew something was wrong.
A visit to the GP and it turned out that moving house to Woodlands Drive (there’s a clue in the name) had led to pollen induced asthma and “whilst we’re at it” said the GP “did you know you’ve got a heart murmur?”
The breathing issue was hit hard with high dose steroids, a steroid inhaler and a nasal spray and the heart murmur needed a heart scan but is probably something and nothing, he says with fingers and toes crossed.
Recovering from everything thrown at me in the first half of 2025 has been really tough. There’s been days when I’ve got back from an attempted run that had been awful and said to the boss “Stuff it, that’s me done with running” but I’d still get out and try again within a day or two.
Then a breakthrough, I actually managed to run, very slowly, for 5km without needing any walk breaks. It wasn’t fast and it wasn’t pretty but I did it and then lie and behold managed to do it again a few days later.
I’m hoping that this signals the start of a spell of consistent health with no more setbacks. Cancer never stopped me running and was never going to but the knee surgery and then everything that’s happened this year has really been a battle but, as Chumbawamba said “I get knocked down but I get up again”
I have some targets for the year ahead including building up to 10k, increasing speed a little and joining another running club. Exercise is so vitally important for everyone but there is now overwhelming evidence of the benefit of exercise for cancer patients and I see it as part of my treatment pathway.
My days of being a decent club runner may be over but I’m not dead yet!
It’s great to start by celebrating still being alive at the end of another year given that, in May 2017, I was told I might only live 2 years! 2024 saw me enter my 8th year post diagnosis having survived 7 years and still living well with stage 4 prostate cancer.
However, 2024 was plagued with knee problems. Surgery in late 2023 to trim a cartilage hadn’t made any difference and I was in significant pain impacting my day-to-day life and unable to do very much weight bearing exercise.
The surgeon was unimpressed when I went to see him within 6 weeks of the cartilage op, telling me that I hadn’t given it enough time to work. When I reminded him that I was living with incurable cancer and time was actually quite important, he relented and scheduled me for a part knee replacement on 1st May which went ahead as planned and I’m now bionic!
Recovery has been way tougher than expected. The knee itself is great but the loss of cardio vascular fitness had a huge impact and I’ve really struggled to get fitness back. It’s very much still a work in progress but I’m very determined!
January saw our now normal trip to the Canaries for some winter sunshine, this time to Tenerife where we were blessed with having our fabulous friends Steve and Sue with us, friendships that have lasted 6 decades are few and far between. We had a great time and were blessed with some lovely weather and amazing food.
Music has been a huge part of our lives but particularly since my cancer diagnosis. This is a link to an article I wrote about music and how it can save our mortal souls How Can Prostate Cancer Patients Use Music For Support? and 2024 was no exception to our musical meanderings as we went to loads of gigs. March is the annual Country2Country 4-day music festival in London which was great but I’d hoped would be the highlight of the musical year, seeing Bruce Springsteen at Wembley, turned out to be a disappointment as the sound quality was awful. The disappointment was at least offset by seeing the incredible ABBA Voyage which was utterly stunning!
We went to plenty more concerts and even ventured abroad to visit Tracey’s Brother David who lives in Amsterdam which gave us a chance to see Morgan Wallen who had become a huge star by then. Disappointingly, we’d had tickets to see him in a tiny Manchester venue in Spring 2020 before he rose to fame but we all know why that was cancelled.
I’m delighted that my work as a prostate cancer patient advocate went on at a pace in 2024. I was asked to be part of conferences in Paris and Hamburg and whilst they can be a little stressful, especially when you’re telling health care professionals that they could do things much better, they are a great experience with little old Tony the council estate scrote sharing a stage with some of the world’s leading Professors, Doctors and Oncologists in the field of prostate cancer. It’s great that patients are given a voice like this but even better when the health care professionals in the audience tell you they learned so much by listening to you. It’s also amazing that one of my presentations lead to a conversation with a urologist in Brazil about setting up Prostate Cancer support groups over there as they don’t have any.
Holidays in the UK have not been one of my happier experiences but we wanted to get away with all our kids and grandkids so we ventured to Paignton. Two car loads and Son and their dog in their campervan. It was quite an experience having 6 adults, 2 dogs and 4 children in our caravan for a Chinese takeaway! The weather was reasonably kind to us and we managed to avoid killing each other!
The 2nd half of the year presented some great opportunities to increase the patient voice as a patient advocate. In addition to the international conference in Hamburg I recorded some podcasts for Bayer, hosted a webinar for Tackle Prostate Cancer of which I’m Trustee and Vice Chair with Hash Ahmed the Chief Investigator of the £42m TRANSFORM prostate cancer screening trial and then was invited, by The Duchess of Gloucester, to an evening celebrating the work of Prostate Cancer UK at St James’s Palace and then the following day attended Parliament to support Prostate Cancer Research with the launch of their political campaign for prostate cancer screening. Who knows, one day, whilst I’m still alive, we may see screening in some form!
The 2nd half of the year also meant massive changes in our personal lives. We finally sold our home of 34 years in June after it having been on and off the market since before covid. This was a real wrench as I kept telling myself that I didn’t want to move whilst accepting that we had too as the house was now too big and unmanageable and we needed to get rid of the mortgage.
Remarkably it took nearly 6 months to complete and that period was horrendous as our life was in abeyance. Eventually though we did complete but couldn’t line our purchase up so ended up living in the upper two rooms of Mother in Laws dormer bungalow for7 weeks. We had a bed, a TV and Radler our German Shepherd dog. Quite an experience.
We then thankfully completed on our new house just before Christmas and moved to Thelwall. I was no longer an Altrincham boy but, as they say, you can take the boy out of Alty but you can’t take Alty out of the boy. I’d lived and worked in Alty for 67 years and it was a massive part of my life but it’s been quite an adventure since and I wish we’d moved years ago!
November was year 6 of Paint Altrincham Blue a concept that I came up with to have a week of men’s health awareness throughout the town. This was never meant to be a fundraiser but it raised over £5,000 and, who knows, may save a life or two. It was very flattering to be copied by Heald Green that became Heald Blue for a week.
From a running viewpoint there were lots of lows in 2024 thanks to the new knee but also some highs.
I’ve done some pretty amazing things in my running life but nothing has ever given me as much pleasure as coaching a group of complete beginners for my club and watching them as a group, develop friendships, improve as runners and then go on to do things they never dreamed possible when they first turned up on a cold January Saturday morning.
I also reached the milestone of 250 parkruns of which 226 have been since my diagnosis. We’ve done parkruns in 3 continents and 6 countries and yet I also hit the milestone of 200 parkruns at Wilmslow parkrun on the same day.
If you’ve got this far, well done. I write these reviews for my Grandkids to read when I’m no longer around but hopefully that’s a long time away yet!
That was a year that was. It certainly started on a high but the ending wasn’t as great!
In 2022 I set myself the challenge to attempt to run at least 5km every day for 365 days to raise money for the Move Charity, that later in the year I became a Trustee of. Due to 3 days where I tested positive for covid and couldn’t run, I extended the period to 3rd January 2023 and 80 or so friends and family turned up at The Carrs in Wilmslow to walk, jog or run 5km with me. Indeed, friends from all over the world joined for what had become known as #movewithtony day. We had ITV Granada Reports camera’s there and later I went into their studios to do a live TV interview via the BBC Radio Manchester studios for a live radio interview. It was very emotional after the Granada Interview when my daughter sent me a picture of my baby granddaughter reaching out to touch me on the TV screen!
The challenge was featured in the press from local to international including Runners World USA!
Most importantly, the challenge raised very close to £21,000 including gift aid as well as a huge amount of publicity for Move and 5K Your Way during the year.
It’s always a privilege and a great honour, as well as a bit of a challenge, to be asked to talk to local school students but I was invited to take assembly at a local school and then to take assembly 4 days in succession at the local Grammar School for boys to highlight cancer awareness and the value of fundraising that they’d done. The challenge is to make these talks motivational but also to make sure that they take the message home to their father’s, Uncles and Grandfathers and I know that I succeeded as several parents that know me contacted me to let me know. Winning!
Whilst on the subjects of talks I carried on doing awareness talks for Prostate Cancer UK but this year did some talks for Tackle Prostate Cancer and MacMillan as well. The talk for MacMillan was to all the UK offices of one of their major corporate partners. I spoke to Oncology students, Manchester University where my daughter in Law attended as she works for them and I only just staved off the tears when I talked about her sons, a GP primary networks patients which I thought was amazing as, typically, GPs are very reluctant to talk to patients about screening and here was a PCN letting me do just that. I also spoke to many businesses and in total managed 43 talks. One, for Amazon, was professionally recorded for distribution to their 15,000 strong UK workforce but, unfortunately, I can’t share that. I did however do talks for Prostate Cancer support groups and one of those was recorded and here’s the link. https://youtu.be/J8Wy-YjLgzc
I also had the honour of being keynote speaker at a St Helens Rotary meeting and managed to keep them all awake!
One of my favourite other talks was as a speaker at an all-female networking meeting. This is my perfect audience as I just know that they’ll go home and kick backsides and the local GP’s will be inundated with requests for PSA blood tests.
Apart from the talks for schools and support groups the 43 talks that I did in total reached almost 20,000 people. Each of those people will have spoken to at least two other people thus reaching at least 50-60,000 and hopefully saving many men’s lives through early diagnosis. My talks get amazing feedback as a rule and here’s one example: –
“I just wanted to say thank you for today’s fantastic session. Such a great reminder and I was particularly moved by Tony’s powerful and personal story.
It was a great prompt for me today to get a PSA test, as it has been a few years since my previous one and my father died of prostate cancer. I’m currently on hold to my GP as we speak, to get this booked in.”
And another: –
“My Uncle said it was excellent – the presenter was so knowledgeable and answered loads of questions from staff – he said he was particularly struck by how much colleagues didn’t know about the basics and therefore how valuable the talk was. He said it is the one and only time he’d ever emailed HR to say “thanks for putting on such an interesting session”.”
My work in the Prostate Cancer field took a significant step forward when I was elected as a Trustee and Vice Chair of Tackle Prostate Cancer, who support all the UK wide support group leaders helping men and their families living with Prostate Cancer, and became regarded, I hope, as one of the leading patient voices in the Prostate Cancer arena.
I’ve worked with three pharmaceutical companies (paid work that funds my pro bono work) helping them understand the needs of men living with advanced stage prostate cancer and my big hope is that this will lead ultimately to the development of truly personalised care for men.
I’ve written articles for medical journals, reviewed research grant funding applications, helped with the development of The Infopool, a superb tool supporting newly diagnosed men, became Lead Patient Collaborator on a potential £2m, 10-year, research trial that regrettably, as yet, hasn’t received funding, recorded numerous podcasts including this one on men’s health https://themoveagainstcancerpodcast.transistor.fm/36
I also wrote many articles for the American website ProstateCancer.net and they are worth a read.
February was lovely as we had a winter break in Tenerife that was much needed but that was slightly tempered by hitting retirement age and having to apply for my flipping bus pass!
A highlight that month was meeting up in New Ferry with three pals, Phil who lost his young Son Nate to a brain tumour, Chris and Liam who were living with different incurable cancers, for a charity football match. You’ll remember Chris and Liam from our three not dead yet men hikes in 2022. Sadly, we lost Liam later in the year and February also saw another friend, Gemma, taken far too young with breast cancer. Both were fabulous people who are very much missed.
Gemma and I, together with our lovely, but also no longer with us friend, Helen Bacon, recorded a video and did a few TV interviews for MacMillan a few years ago about the benefits of exercise for people living with and beyond cancer and this is one of my passions so I’ve continued to work on the Prehab4Cancer programme in Greater Manchester as well as helping develop 5k Your Way, one of the offerings from Move Charity, with new groups coming onboard, old groups re-launching and launching 5KYW in Scotland. I now get asked to speak at national conferences on the subject of Prehabilitation as a patient expert and I’m already booked to talk at international cancer conferences in Spring 2024 in London and Paris. Springtime in Paris but don’t tell Mrs C!
April was special for different reasons. I was asked to do a cheque collection and thank you speech at a golf day. Not normally my thing but when they told me that the special guest would be my hero, Bryan Robson I jumped at the chance. I got to share a table with the Liverpool legend Bruce Grobbelaar. Well, you have to take the rough with the smooth! I got fed as well.
Also, in April I got to do one of the most powerful things I’ve ever done when ITV Granada contacted me to tell me that they were recording a series on mental health and one episode would be on mental resilience and they’d immediately thought about me from previous interviews that I’d done for them. The interview was one to one with legendary newscaster Lucy Meacock. A short version was broadcast during the North West of England’s early evening TV news whilst the full version can be seen at this link https://www.itv.com/news/granada/2023-05-08/how-a-mans-terminal-cancer-diagnosis-led-him-to-have-a-mental-breakdown
The response was incredible with people contacting me out of the blue, tracking me down on social media, to tell me that they saw the broadcast at a time when they were at a really low ebb and it had really helped them to cope better and be positive. I was close to tears reading many of the responses and it was incredibly powerful.
As in previous years I carried on working as a coach and leader at my own running club as well as being a Trustee for the Mile Shy Club, a running club for beginners. I also continued as a Trustee of Altrincham Football Club Community Sports Charity who do the clubs community outreach work, coaching in schools in underprivileged areas and for disability groups.
June saw me being filmed for The Christie Hospital end of year review. This is where I’m treated and I use their closer to home service which is a godsend.
July, we had the joy of taking our two Grandsons to London for a weekend. The first time they’d been away without their parents, the first time on a Pendolino train, the first time on the London Underground. It was a resounding success as we asked them if they’d go away with us again and got a firm yes! Finn, the younger one, when asked what he enjoyed the most said “Chasing the pigeons!” Out of the mouths of babes, eh?
The year started with my completion of the 5km every day for 365 days but, unfortunately, August saw the end of my 2023 running. I’d been struggling with a painful knee for a couple of months but couldn’t resist doing Amsterdam Se parkrun whilst visiting my Brother In Law in his home City. I completed the parkrun in lots of pain and haven’t run since. Thankfully I’ve accessed speedy care, especially when you consider how difficult things are in the NHS at the moment. An MRI scan before the end of August showed a medial meniscus tear and significant bone damage either side of the cartilage. An arthroscopy on 13th December tidied it up but as I write this, mid-January, I’m still in lots of pain and facing the difficult decision in April as to whether I need something more radical, a partial knee replacement. That’s going to be a tough one!
Health wise my cancer is still well controlled by a drug developed here in the UK by The Institute of Cancer Research, Abiraterone. I’m so grateful to the amazing research team at ICR and try to pay it forward by helping them whenever I can. I do some reviewing of lay versions of research grant funding applications so I get to go and visit the scientists periodically and look at the amazing work they do. I also helped them with a fundraising project in September. They had trainers produced with the words “Finish Cancer” on the soles and people were asked to imprint those words in the sand on the coastline around Britain and then publicise it on social media. I hope it was a great success in funding their vital work. I’m thrilled that I’m on a panel at the Conference in London with the man who discovered Abiraterone, Professor Johann De Bono!
One annoying health issue has been a touch of mild vertigo that started just before Christmas and reminded me of the old saying “Accountants don’t grow old, they just lose their balance.”
As people know I’m very passionate about the value of exercise for people living with and beyond cancer which is why I’m North West Ambassador for 5K Your Way part of Move Charity that I became a Trustee of. ICR asked me if I’d help them with producing a blog about the value of exercise and this was published in early 2024 but it’s so excellent that I’m posting a link in this blog. https://www.icr.ac.uk/blogs/science-talk/page-details/can-exercise-reduce-cancer-risk-and-support-treatment
October was hectic with 7 radio interviews in one day, organised by Bayer, with the amazing Professor Alison Birtle raising awareness about risks of Prostate Cancer. Very intensive but reaching a big audience so very worthwhile.
Then we come to November which was crazy with the 4th edition of Paint Altrincham Blue, a week of men’s health awareness in my home town, supported by Altrincham Business Improvement District. Planning for this started 9 months earlier but it’s always a bit manic at the end. The highlight was a Comedy Evening at Altrincham FC which went brilliantly but we also had awareness stands in Tesco Extra and engaged with hundreds of people. There was a blue themed trail around the town and this year’s theme was blue sports club jerseys, 17 of the bloody things! They were displayed in the windows of businesses throughout the town, each club badge was obscured with a QR code that gave clues as to which club it was, the Man City shirt was a bit easy, as well as facts about testicular and prostate cancers and men’s mental health.
Putting PAB together was a massive job and unfortunately it took it’s toll a bit as I was shattered by the end of the month. Putting the health facts together was incredibly sobering though, especially around men’s mental health which really rocked me.
PAB has never been about raising funds, it was always an awareness raiser but this year the comedy night and the sale of some of the blue shirts plus lots of generous donations and a bucket collection meant that nearly £5,000 was raised for Prostate Cancer UK as well as a small donation to Andy’s Man Club from the comedy night raffle.
December, thankfully, was much quieter. The main body of work was assisting in the production of a paper around Advanced Cancer Diagnostics that will be published in 2024 and I’m named as a co-author. Hopefully the paper will help influence the future of cancer diagnostics and save many lives through earlier diagnosis.
Professional life took an interesting turn in the Autumn when the accountancy practice that I used to co-own was sold to a larger firm, Bennett Brooks, and so I had my 4th employer in 51 years in the profession and one of those only lasted 6 months because we had a hate/hate relationship!
Let’s wrap up with some family stuff. It’s been wonderful watching my grandchildren grow up, something that I never thought I’d see 7 years ago when I was given 2 years to live and only had Ethan who was three back then. He’s now 10 and growing into a football crazy young man.
Brother Finn is now 5 and he really is a character. The pigeons love him!
Marnie, our Step-Granddaughter is now 9 and watching her with her baby sister, Lumen, is wonderful. They clearly love each other so much just like the boys do.
Lumen is now walking and talking. I’ve been Grumps before Ethan was born and Lumen hasn’t quite mastered that so I’m lumps at the moment which feels about right after months of no weight bearing exercise and piling a few pounds on!
Our children continue to follow their own successful careers and we’re really proud of them. We try to see them all as often as we can and do the usual bits of grandparenting when we can to help them. When the grandchildren read this at some point in the future, they’ll understand just how much they mean to me. The last 7 years has been horrendous but they give me a reason to live!
It would be remiss of me not to mention our family rock, the glue that keeps us all together, my wonderful Wife Tracey. She’s had a challenging end to 2023 but we’d all be lost without her. She’s an amazing women and we’ve been married 43 years. When I was diagnosed in 2017 I didn’t think that there was a hope in hell of us getting to our golden wedding anniversary in 2030 but now I think there’s an outside chance and it’s going to be one hell of a party!
Well, if you’ve got this far through my personal lovefest well done and thank you. I hope 2024 is a great year and hope I can get back to running sooner rather later. Goodness knows what the year will hold but good health is the most important thing we have and I wish everyone that.
BBC Radio Manchester Interview Part 1
Another year and still here to tell the tale!
It’s incredible how much was packed into 2022 but let’s start with something completely irrelevant but quite funny. I was in the village butchers stood next to a little old lady and we had friends coming round for dinner so I ordered four pieces of fillet steak. The butcher said “That will be £xx” and I, jokingly, said “HOW MUCH?” somewhat incredulously. The little old lady said “If you want the best you have to pay for it” and Nigel, the butcher agreed. I said “I’d now like some of the 2nd most expensive thing you sell, minted lamb chops”. The butcher said “You’re not wrong there” and the little old lady said “If you want the best you’ve got to pay for it”. The other butcher then served the little old lady and she ordered the cheapest thing the butchers sells and the butcher said “That’ll be £xx” and the little old lady said “HOW MUCH?” somewhat incredulously and I said “If you want the best you’ve got to pay for it”. Nigel said “Have you two been rehearsing outside?” and I said “Yes, we’re a well honed double act”. We had everyone in stitches in the shop that morning!
It doesn’t get any funnier than that but I hope you don’t find it too boring.
The highlight of the year was undoubtedly in January with the birth of our Granddaughter, Lumen., the light of our life. When you are living with terminal cancer, milestones like this assume great magnitude and my grandkids mean the world to me. I really didn’t expect to get to see Ethan become a teenager when I was diagnosed in 2017 when he was three but now he’s coming up to ten I think I’m in with a shout. I realise how lucky I am to still be fairly well and stable especially when I’ve seen men diagnosed after me who haven’t been so lucky. Long may it continue.
The start of January saw me setting off on my challenge to run at least 5k every day for a year to raise money for Move Charity who are behind 5k your way a cancer support group linked to parkrun that encourages those living with and beyond cancer to move 5k their way. Apart from the fundraising I’ve also stepped up to become more involved with the core team at Move working on development of 5k Your Way across the UK and Ireland.
The challenge itself led to five TV appearance, numerous Radio interviews, three podcasts and articles in lots of newspapers and journals. This raised the profile of Move and 5kyw enormously and it also did the fundraising the world of good with close to £21,000 raised incl gift aid.
The running was relentless, running no matter what day it was, how ill I felt, even on treatment days when I felt rubbish, what the weather was. I ran in extremes of temperatures from -10c to +35c! I ran whilst on holiday.
A great thing was getting chance to run with friends from all over the country and, on the final day, “Move with Tony day” friends and family joined me and we were filmed by ITV Granada who I did a live interview for in the studio. That was scary! Other friends joined in and ran where they live. People ran in Africa, America, Australia and across Europe. A brilliant way to unite my running friends across the globe.
Top left, the final day. Bottom left running with the amazing Shiv Smith a specialist cancer nurse. Top right with Adam Sharp clinical researcher helping to keep me alive. Middle right with our niece Georgina. Bottom right PhysioPhilip who supported me all year long by doing at least 5k every Friday.
I carried on doing lots of prostate cancer awareness talks. I know that these save lives and they’ve become something I’m very passionate about. However, I get to do some unusual talks to very diverse groups. I’ve even done talks on building sites! The one that stood out most though was supporting my friend Alex McCann with his fundraiser Altrincham Vs Cancer raising funds for The Christie, where I’m treated, when I got to speak to Altrincham Grammar School For Boys Medical Society and then take assembly to encourage the students to become messengers for me and to spread the word about risk to their Fathers, Uncles and Grandfathers.
Well, it was the only way I was ever going to get into a Grammar School!
Another passion has been coaching others and I ran two very successful Couch to 5K courses with well over 40 complete beginners graduating and many going on to become members at my club Styal RC.
I don’t race any more but I still like to be involved in racing so I volunteer to help at RunNorthWest events and do some pace making for them. It gives me lots of pleasure and I get to see friends from the running community that I wouldn’t otherwise as well as helping some runners get PB’s.
Given that my Wife once told me that I was the worst public speaker she’d ever heard it’s remarkable how much public speaking I now do! In 2022 alone I spoke at two national conferences about Prehabilitation for people newly diagnosed with cancer as well as speaking at a local Personalised Care Conference about a patients view of what personalised care looks like. They also let me loose at the Greater Manchester Cancer Conference!
A speaking highlight was talking to the team at the Institute of Cancer Research in Sutton near London. I do some reading of the lay versions of their research funding applications so this was a fantastic opportunity to meet the team and hear all about their research as well as deliver a talk about life living with advanced stage prostate cancer and to give them an insight into the value of their amazing work. After all, they invented the drug Abiraterone that is currently keeping me alive. I also got to have dinner, put the world to rights and run on the Epsom Downs with my friend Adam Sharp from ICR who invited me down. I think there were a few tears in the audience during my talk. I seem to have that effect on people!
May saw a wonderful occasion as my Wife and I finally got to go to a Royal Garden Party at Buckingham Palace as part of my award in The Queens 2019 birthday honours of the British Empire Medal. Such a shame that the weather was so awful and little did we know at the time that Prince Charles would become King before the year was out.
June was pretty epic as well! Social Media can be a truly awful place but I’m blessed to have met some amazing people via Twitter including the other two of the three Not Dead Yet Men Walking trio. The three of us all living with terminal cancers but still pushing back barriers and doing mad things as well as raising money for charity. This time we met up to climb Snowdon and took some friends along with us. It was much harder than when I’ve done it previously but I guess that 5 years of hormone deprivation therapy had taken a toll.
Also in June I was asked to support the campaign to get the government to agree a 10 year cancer plan as we needed to create a unique opportunity to “Win the Cancer Battle” We managed to create some great publicity but alas it seems to have been to no avail!
July was pretty epic as we celebrated Lumens christening before heading off to our happy place, the Dolomites for a great hiking holiday.
In September I was asked to be part of a working group at Prostate Cancer UK trying to put together a new position statement on screening for prostate cancer in the UK. This is such a vitally important piece of work and I’m delighted that it’s resulted in a much stronger position from the charity to push for screening using the PSA blood test as the starting point.
Also in September came the very sad news of the death of Queen Elizabeth and a national outpouring of love and affection for her.
Also in September was the Greater Manchester Marathon March for men and I was delighted that it would start at my home town football club Altrincham FC. Even more delighted to spend some time with my friend Kevin Webber, another member of the stage 4 PCa club and to be asked to start the March. My lasting memory of the day is that 27 miles is a shed load of a long way and I was totally shattered at the end of it!
Going to watch Altrincham FC has become something that I really enjoy as I get to share it with my Son, Daughter In Law and Grandson who is football crazy!
Back in 2020 I came up with the concept of painting my home town, Altrincham, blue for a week and 2022 was the third PAB. We had café’s doing blue cakes, bars doing blue cocktails, there was even a Tony Cocktail! We had shops lit up blue and even the town hall illuminated blue. The primary purpose of the week is to raise awareness of men’s health issues particularly prostate and testicular cancers and mental health. We had an art trail with blue paintings from the local primary school and paintings depicting men’s health issues from some senior schools. The paintings were absolutely stunning!
Other highlights of the week were being asked to do a lunch time awareness talk in the local town centre pub only to get there to find out that no one had told the pubs regulars! That was a fascinating talk as I rounded up folk to listen with the promise of free sandwiches!
The main event in the week was a talk at Altrincham Football Club where Neil Fachie OBE partially sighted paralympic cyclist and multiple gold medal winner told us about sporting triumph over health adversity whilst Dan Rowe from Andy’s Man Club talked about mental health. Both talks were amazing so I was very nervous about going last but I think I held my own. Yes, there were tears again! I even got to hold Neil’s Tokyo Olympic gold medal!
Finally, I picked up a couple of awards along the way! I was short listed for the North West Cancer Awards as Male Champion Awareness raiser and was delighted to win the award. Then in December at my running club awards ceremony I won the running achievement award for my 5k 365 day challenge. I was surprised to win this as the other people short listed had achieved some amazing things including Gary who had been selected to run for team GB Seniors!
December was mainly about surviving the rest of the 365 day challenge as well as doing lots of media work, thanks to my lovely friend Anna, to promote the fundraising and Move Charity. The final three days of my challenge fell into 2023 because I tested positive for Covid very briefly earlier in the year so more about that in next years review.
I did say that it was epic year and, if you got this far, well stuck at. I’m very proud of my achievements but actually much prouder that I may have saved a few lives along the way!
Bizarrely my main running achievements/highlights in 2021 didn’t really include much running! We started the year under Covid restrictions meaning that running club activities were stopped and you could only exercise with one other person outside your own household. Despite that our club managed to maintain compliant activities until late March 2021 when the lockdown was eased. Massive credit to the Styal Running Club committee for organising so many virtual events and charity fund raising events that kept us connected and raised £’000’s for charity.
Of course we had home schooling which presented lots of challenges away from running but thankfully most parents realised the importance of keeping their children active and maintaining fitness levels.
At the earliest possible opportunity, in Spring 2021, I engineered our clubs return to running within a Covid compliant framework that included booking in sheets, rules for compliance and splitting into groups led by our amazing LiRF’s before we were able, eventually, to resume near normal activities in the summer time.
Another major milestone was producing the Styal Running Club strategy document for the future of the club in the short and medium term and then implementing the first key strands which were a move to a new venue, Wilmslow Phoenix that has been an outstanding success to date. We have been made to feel incredibly welcome!
A number of club members were taking on their first marathons in autumn 2021 and it was great to help them a little with a Zoom talk about endurance running. I’ve no idea if it did actually help but I don’t think it did any harm!
9th May 2021, the 4th anniversary of my cancer diagnosis, saw me complete a 374 day, 1546 mile streak of running (mostly) or hiking (proper hiking) every single day!
The highlight of the year was, without question, completing the 100km ultra marathon Race To The Castle that I wrote a detailed blog about https://runningintocancer.co.uk/2021/07/01/pushing-myself-to-the-limits/
For people who don’t have a life reducing illness, the treatment for which makes all forms of exercise 10 times tougher, RTTC would have been a serious challenge but for me this pushed me to the absolute limits of my endurance and, despite the issues that I have to overcome every day, I completed the race in just over 18 hours, including pit stops, finishing 7th out of 15 in the Vets over 60 category.
Other exercise milestones, albeit hiking rather than running, were completing the MacMillan Mighty Hike, 26 miles and 3200ft of elevation gain around Ullswater with my friends from Fitclub.
Completing a Prostate Cancer UK Marathon March for Men with Jeff Stelling.
and climbing Scafell with Liam Bergin and Chris Johnson, two other men living with different terminal cancers.
Racing now presents some challenges for me as I just don’t have the strength any more to race hard like in the old days. However, being involved in races is a massive part of my running DNA and it was great to find a niche as a pacemaker at a number of RunNorthWest events and also to help out as a volunteer. It’s quite magical seeing the people you run with hit a target that they didn’t think achievable.
Volunteering at parkrun is something that is also hugely enjoyable and, amazingly, I completed my 150th parkrun and 50th volunteer stint on the same day!
Exercise is a massively important part of my life and being a patient representative for Prehab4Cancer in Greater Manchester, which supports cancer patients pre-treatment/surgery so that they are better able to cope and return to normal life more quickly, is a real privilege. The P4C team did an amazing job coping through Covid and of course the programme manager, Kirsty Rowlinson-Groves ran RTTC with me. As she would tell HRH Princess Anne when we met her later in the year “He made me do it”
As a patient “expert” I’ve been able to use everything that I’ve learned about the benefits of exercise to be a speaker at two national Prehab conferences, speak to a number of prostate cancer support groups, speak at the Virtual Greater Manchester Cancer Conference and, over the Christmas period be featured on BBC North West talking about the benefits of exercise https://twitter.com/ethansgrumps/status/1475106516751507457/video/1
Throughout the year it’s been a real pleasure to be part of 5k Your Way as ambassador at Wilmslow parkrun and to be North West regional champion. I arranged Zoom get togethers during lockdown to keep us connected, appeared in the 5kyw podcast and helped facilitate the setup of new 5kyw venues with more to come in 2022. Watch this space!
The year-end stats show that I ran 990 miles, despite the last 2 or 3 months being restricted by various health issues. In addition I hiked 172 miles and I used the various exploits mentioned in this blog to raise nearly £11,000 for MacMillan and Prostate Cancer UK taking my personal fundraising to £45,000+ in recent years.
As for none running achievements/highlights it’s also been an excellent year:-
Cancer research is so important and when the Institute of Cancer Research asked me to record a video about how I’ve benefitted from research for their winter fund raising campaign it was very easy to say yes. https://youtu.be/G4y73I-HIYU
A massive highlight of the year was being a part of Maggie’s On The Runway fashion show as a committee member, Catwalk Captain and reluctant model. As an ambassador for Maggie’s this is such a significant event and, thanks to the incredible work of Margo Cornish, raised over £225,000!
I was delighted to do Face to Face speeches and talks for Rotary club and there is a recording of my talk for Sale Rotary Club available at this link https://youtu.be/6cpMO37H7Sw
It was also fabulous to hit some personal milestones:-
How could I not mention being chosen to turn on the Christmas lights in my home town, Altrincham with Alex McCann?
There are lots of other things I could talk about but I’ll leave it at that as it’s already too much of a Tony lovefest.
2022 will no doubt present its challenges but let’s meet them head on and live every minute of every day to the absolute full.
If you’d told me, in May 2017 when I was diagnosed with terminal prostate cancer and told I may only have as little as two years to live that, four years later, I’d be attempting to complete a 100km ultra-marathon I’d have told you that you were utterly insane!
In May 2017 I started on hormone therapy in two different forms and that treatment has impacted on every single aspect of my day to day life. It effectively means that I can’t do anything as well as I did before my diagnosis and I’ve been hit hard with all the side effects.
Reduced muscle mass and bone density, fatigue and weight gain (bloody steroids) in particular make physical exercise loads tougher and, in particular, running. I think that only men who are going through this treatment truly understand its impact.
My first question to my oncologist wasn’t “How long have I got to live?” it was “Will I still be able to run?” and the answer was yes but you’ll be a lot slower and shouldn’t try to run as far as in the past.
Before I could get back to running though, I had to wait for the stress fractures of my pelvis to heal. The cancer had got into my pelvic bone and running on it had caused fractures. That took a while to sort out but I did get back to running and the Oncologist was absolutely correct about me being slower. The warning about running further was primarily to protect my bones from further damage given that the hormone treatment leads to bone thinning. A year after my diagnosis I discovered the extent of the cancer spread. It was in the pelvis, hips, ribs, spine, neck and skull! They think I’d had it for 10 years and I’d had no symptoms at all until a runners “groin strain” developed in February 2017. It was a pretty crap groin strain! If I weren’t a runner I’d have found out even later and been in an even worse condition. Running literally has prolonged my life!
Despite all the challenges faced I have found that exercise is truly the best way to cope with the side effects and when I get hit by a wall of fatigue the best thing to do is get the running shoes on and go for a plod. I know that that sounds completely counterintuitive but it works for me and there is a massive amount of evidence emerging that says that exercise is vital for those living with and beyond cancer.
Why an ultra I hear you asking?
It goes back to a few months after my diagnosis when I asked Prostate Cancer UK if they knew of any man with a similar diagnosis who was also a runner and they introduced me to Kevin Webber. Kev was diagnosed terminal in his late 40’s but hasn’t let it stop him taking on madcap challenges like running the Marathon Des Sables 4 times and taking on the arctic 380 mile ultra-marathon. He really is superhuman but he is also a super human and has been a great source of support to me whilst constantly challenging me to push my limits. So it was all Kev’s fault!
Now I knew that I simply didn’t have the physical strength to complete an ultra-marathon in one day so when I heard about Race To The Castle and that it could be done over two days with an overnight camping stop I thought that that might be within my capabilities even though I knew it would push me to my absolute limits.
How on earth do you train for that distance when the training plan seemed insoluble? I knew that doing the required long runs/hikes back to back on Saturdays and Sundays would leave me wiped out for days so that wasn’t going to happen so I largely followed the two day walking plan but running the distances instead of walking them and I did one longer run at weekends with one shorter one. The furthest I managed was half marathon distance so I knew that there wouldn’t be a huge amount of running in the ultra and I was fine with that, I only wanted to finish!
As an advocate for exercise for those living with and beyond cancer I’ve been privileged to be a patient representative for Prehab4Cancer in Greater Manchester, a prehabilitation programme for people newly diagnosed that aims to get them fitter before treatment/surgery. I jokingly suggested during a steering group meeting that it would be good if some of the other members would join me and the lovely Kirsty Rowlinson-Groves, the programme manager, took up the cudgels and agreed to give it a go.
We both decided to use the event as fundraisers. In my case for Prostate Cancer UK and in Kirsty’s case Kidney Cancer UK which is a charity that had helped her and her late Husband when he was diagnosed with kidney cancer in early 2016 and very sadly passed away in August 2016 just a couple of months after their first wedding anniversary. The ultra would take place on John’s birthday so it would be deeply emotional one way or the other.
At this stage let’s step back a few days. I’d also agreed that, with friends from Fit4Life FitClub, a fitness class that I’d been going to for several years that I’d take on the MacMillan Mighty Hike with them. This is a marathon hike around Ullswater but it was the week before the ultra. Crap timing and I’d have to take care that I didn’t take too much out of my body so close to RTTC but a promise is a promise!
On a very warm day 11 of us set out to complete the Mighty Hike but it was very tough and had over 3200 feet of elevation gain but I finished really strongly which gave me confidence for the following weekend and we raised £7,000 between us for MacMillan.
The big day arrived, Saturday 26th June and, after a sleepless night in a hotel my Wife and I set off for the start at 6:30am where I was meeting Kirsty at 7:15 for our starting wave going off at 7:50. Opening the bedroom door and seeing it raining filled me with dread and the forecast for day 1 had changed for the worst. We were going to be wet all day!
As it happened we were allowed to set off a little early and extremely nervously we trundled off to cover the first, allegedly 34 miles it was actually 35 miles and over 2,200 feet of elevation gain (thankfully, only 1,000 feet on day 2), and reach base camp for the overnight camping stop.
The bulk of the elevation gain would be on day 1 and we expected it to be tough. The weather made it much tougher with howling wind and constant light, occasionally heavy, rain. It was also very chilly especially at the high point on top of the moors. We felt so sorry for the volunteers manning the pit stops, they must have been freezing. At least we had movement to keep us a bit warmer.
We certainly didn’t hang around the pit stops as our body temperatures dropped very quickly when we stopped moving but it was essential to stop briefly, re-fuel and top up our water bottles as, despite the cold, you could still very easily get de-hydrated.
Thankfully as we descended from the high point it wasn’t quite as cold and we reached pit stop 2 at the Day 1’s half way mark which was also the lunch stop and, at this point, Kirsty’s friends were waiting for us and it was lovely to see some personal supporters out on the route.
Kirsty was a complete natural as far as ultras were concerned. We’d had some exhilarating long downhill runs through the forests but I knew that I wasn’t able to run a great deal in the 2nd half of day 1 and Kirsty was fresh as a daisy so I told her to push on and we’d meet up at basecamp.
Tracey, my wife was out and about with our dog doing her own thing but she was checking that I was okay with regular phone calls. As we were approaching the 29 mile mark she called me to say that she was at Felton and was watching runners come through. Amazingly we were only half a mile away and it was wonderful to see her and Radler and have them walk with me for a kilometre or so. It was a massive lift at a point when I was flagging massively and doubting whether I’d ever get to Basecamp let alone the finish.
By this time the underfoot conditions that had already been incredibly challenging had got far worse with the rain turning parts of the route into a quagmire which really did sap my energy.
Where on earth was the day 1 finish? It was supposed to be at 34 miles. That mile marker came and went as did the 35 mile marker and then we heard the commentator cheering people in and, as I rounded the corner, I saw the finish line. What a relief but even better was seeing Tracey to cheer me in. She was absolutely brilliant in getting my overnight bag from the baggage area whilst I got my tent allocation and then helping me to get my gear sorted so that I could dive into the showers, warm up and get warm clothing on. The weather was still grim and it was hard to stay warm. She even sorted my tent out for me!
We headed for the food tent and got some hot food which was surprisingly good. There was a bar and a couple of beers helped relax the muscles a bit but I was very worried about day two. It was incredibly hard to get moving once we’d sat still for a while so it was going to be horrendous the following morning.
It was great to meet up with Kirsty and chat with other competitors and the amazing volunteers.
Basecamp had everything you can imagine. Plentiful toilets, excellent showers, a bar, a giant TV to watch the football (poor Wales), medical aid, water stations, food serving area and about a thousand tents!
Have I told you how much I hate camping? This for me was absolutely the worst part of the weekend. The only good thing about the one man tents was that they were dry but it was still very cold and incredibly uncomfortable. I collapsed into my sleeping bag fully dressed but still shivering at 9:00pm and barely slept a wink before finally giving up at 4:30am and preparing for day two. Breakfast was at 5 and we wanted to get going as early as possible.
I really struggled to eat anything but forced something down because I knew how important it was to get some fuel inside me.
My legs hated me. Even very slow movement hurt like hell and the thought of another 28 miles (28.75 in the end) was totally overwhelming.
Thankfully the rain had stopped and the forecast for day two was much better, getting very warm in the afternoon.
We got away from basecamp shortly before 6am to attempt to complete day two. It was about 5km to the coast where we would basically head north for 25 miles following the Northumberland coastal path, St Oswald’s Way, to finish at Bamburgh Castle.
After 5km it was clear that Kirsty could go much faster than me so I told her to crack on and I’d see her, hopefully, at the finish.
On day 1 we’d seen absolutely nothing apart from low cloud and mist but wow, day 2 was so much better and the views of the coast were stunning.
On day 1 I’d managed to run all the downhill sections and a little bit of the flat sections (there weren’t many) but day 2 was going to have to be a power walk all the way with a very short sprint finish for the camera’s!
What does power walking look and feel like? Well, it’s very tough and absolutely relentless but I was trying very hard to maintain a 4mph pace and ended up quite close to that.
As the day progressed it got hotter and hotter and, as a result, tougher and tougher and I seriously doubted whether my body would hold up and get me to Bamburgh but I did have one thing in my favour. I’m a stubborn, determined and strong minded person and every time my body said no I made sure my brain kept overruling it. I also used a mantra “Relentless Forward Motion” and I used that over and over in my head to keep me driving forward.
Whilst the coastline was stunning it was also undulating but I was very grateful for the cooling sea breeze. Unfortunately, a lot of the walk was in the dips in the sand dunes and you couldn’t feel the breeze there and it was baking hot. It was important to stay hydrated and fuelled and thankfully the pit stops were every 10-12km and staffed by the most amazing encouraging volunteers who really gave us a lift.
Tracey had kept in touch during the morning and she had managed to get to the final pit stop at 90km and walk back up the course with Radler to meet me and walk with me for a couple of kilometres which also gave me a great lift.
Leaving the final pit stop I had started to think that I could finish but I was totally, utterly wiped out and it really became a battle between brain and body. Brain said “come on you can do this” body said “you’re beaten, just admit it and quit”. The brain won again.
Boy those kilometres counted down slowly from the 90km mark and it was incredibly warm by now.
At 98km I saw Tracey and Radler walking towards me and we walked to the finish together.
As we reached Bamburgh Castle it was clear that the finish line was at least 1km further on and my spirits did drop a little.
The last 400m was back onto the sand dunes, through a stile and then 150m through to the finish. Bring on the sprint finish then I thought and I must have looked like a whirling dervish as I ran that 150m punching the air in jubilation. Bloody hell, I’d only gone and done it! Completed a 100km ultra-marathon, despite my condition, and proving that that the mind is an incredibly powerful thing that had driven me through the two days.
I was totally and utterly broken! This event had pushed me beyond anything that I had imagined to be the outer limits of my physical and mental strength but, bloody hell, I’d done it hadn’t I? Just over 18 hours, including pit stops, after I’d started, I’d managed to get to the finish. Totally elated!
The first thing I did was to head for the bar for a celebratory cold beer when I heard the commentator say that there was a wolf, aka Radler, in the finish area. Kirsty knew that this meant I was probably in the finish area as well and I suddenly felt someone throw their arms around me and it was Kirsty looking as fresh as a daisy. We had a good catch up over a beer and some pics just to prove that we did it. I think she’s got the bug. She was a complete natural.
After a while it was time to head back to the hotel and a long hot shower before Tracey and I headed for a meal and a celebratory drink or 5.
It had been an epic two days, pushing me to the absolute limits.
Between Kirsty and I we’d raised over £10,000 for charity and I’m sure that that had also helped drive us both forward.
I’m writing this 4 days after finishing and my legs are gradually getting back to normal. I’ve had a massively swollen left ankle and a very sore left knee and right achilles but pain is temporary, the achievement is permanent and my medal now takes pride of place with all my other important medals, Comrades and the World Marathon Majors.
Since completing the event I’ve come across a saying that I think truly encapsulates the two days:-
“Your body will argue that there is no justifiable reason to continue. Your only resource is to call on your spirit which, fortunately, functions independently of logic”
That really sums my two days up perfectly. Brain 1 Body 0. Tony 1 Cancer 0.
I wouldn’t wish long term hormone therapy on my worst enemy! There are days where it feels like a punishment for something I may have done in a previous life. Yes, I’m grateful that it’s keeping my cancer at bay for now and yes, the cost is worth it, but it’s also a significant cost. I thought I’d try to explain all the impacts on day to day living so that other men think long and hard about their prostate health and do something pro-active so that they don’t end up living the life I do. It’s really simple, men in high risk groups should insist on having a PSA blood test at least annually in my opinion and a great starting point to assess their risk is this 30 second risk checker from Prostate Cancer UK https://prostatecanceruk.org/risk-checker
I started on hormone therapy immediately that I was diagnosed stage 4 in May 2017. I have 3 monthly injections in my stomach of a drug called Prostap. This stops the production of testosterone which feeds prostate cancer thus starving the cancer. I also went immediately onto Abiraterone, a drug that stops the adrenal glands producing pseudo testosterone. It’s having no testosterone that causes the side effects. Effectively it’s equivalent to chemical castration and I liken a lot of the side effects to what a menopausal woman goes through. I’m certainly much more sympathetic to menopausal women than I ever was before!
Loss of body hair
Pretty inconsequential in the scheme of things but it means that I feel the cold more than I used to. There are minor advantages though. I used to have to shave sometimes twice a day but now I can get away with once or twice a week and it saves money on razor blades and haircuts. Not a bad thing during lockdown.
Weight gain
Taking steroids alongside Abiraterone significantly increases appetite and thus weight gain. Hormone therapy also produces a ring of fat around the middle. This can be controlled with exercise but exercise gets ever harder because of the weight gain. Bit of a viscous circle.
Loss of muscle mass
Exercise is vital to combat this but it’s another viscous circle as exercise gets harder. For me, as a sub-elite athlete prior to diagnosis, this has been a major challenge both physically and mentally as I’ve dropped down the pecking order to being a back of the pack plodder. Age hasn’t helped that either!
Loss of bone density
This can lead to osteoporosis and cause significant problems including spinal compression. Thankfully my oncologist has taken a pre-emptive strike to try and ward this off with three monthly infusions of Zometa but not before I’d tripped during a marathon relay and smithereened my left wrist resulting in 3 days in hospital for it to be plated, pinned and wired!
Hot flushes/sweats
Hence the reference to being a menopausal man! Initially these were unbearable as I could effectively externally combust without any warning. As time has gone by things have improved and I only really suffer at night with night sweats. Trigger foods are generally avoided including Garlic and chilli.
Loss of libido and erectile dysfunction
This is horrendous and for me, watching my erections fade away as the treatment took effect, felt a bit like watching my life blood fade away. I was only 60 at diagnosis and didn’t expect to spend my life as a eunuch! Loss of libido is hard to explain but just imagine never even having sex cross your mind. You need something to turn you on to gain an erection but the mind never goes there and so the body doesn’t follow.
Mental health
A cancer diagnosis is bad enough, especially a terminal one. Its life changing and can totally take over your life when the black dog of despair descends but then add in at that having no testosterone also plays havoc with your emotions. There have been many times where a thought has crossed my mind and I’ve burst into tears. Many times that I’ve cried myself to sleep at night.
Conclusion
Living with terminal prostate cancer and the side effects of long term hormone treatment is awful especially when you also know that your life expectancy has been considerably shortened. Early diagnosis will generally lead to much better outcomes. If you don’t want to end up like me please do something proactive about your prostate health. Today is not soon enough!
Who could possibly have imagined what lay in store for 2020 at the start of the year?
From my own perspective, 2020 was a year that I thought I might not even see, given my worst case prognosis of 2 years from May 2017, but there I was on 1st January 2020, still running! I say running in the loosest of terms though. More like jogging or plodding such has been the impact of my prostate cancer treatment on running. Side effects of having testosterone removed, effectively chemical castration, are not exactly the perfect recipe for us blokes and there’s very little you can do about it.
Weight gain, fatigue, reduced muscle mass and bone density, hot flushes and hot sweats. Dreamy, yes? I was going to say “to die for” but that would be wholly inappropriate!
Fatigue is a tough one. There are some runs where you set off and you absolutely know within half a mile that it isn’t going to happen today. At the start of 2020 that would have led to tears and tantrums and I’d give up, turn back and call it a day. That aspect definitely improved in 2020. Although there are still bad days I now don’t give up (often!) I just slow down, walk and get round.
Weight gain is really tough to control when on steroids or as you could call them, appetite pills. On corticosteroids you are constantly hungry and they definitely do not enhance performance like anabolic steroids. Exercise is important to controlling weight but it is a viscous circle. Every run feels harder than the last but it’s really important to get out and exercise.
Lack of muscle mass really is a challenge. Muscle production is fed by testosterone but I don’t have any so exercise is really important to maintaining muscle mass but it’s so much harder to exercise. Are you hearing viscous circle again?
Hot sweats and hot flushes? Well let’s just say that I’m way more sympathetic to menopausal ladies than I ever was before!
Despite all those downsides, the upside is that I’m still here and still running and I’ll settle for that!
I can’t get away from the fact though that, at the start of the year, I wasn’t enjoying running. It didn’t have any purpose, there were no goals, no objectives, no reason to bother putting the running shoes on. Covid 19 and lockdown one just made that 10 times worse!
However, before we get to Covid, we had a trip to Australia and Singapore in February. Unsurprisingly, the trip was built around doing 3 Australian parkruns and also meeting up with friends to run them together.
We were so lucky to get to have this holiday before the shitstorm of Covid struck but we were met in Sydney with the most horrendous weather. 16 inches of rain fell in the four days that we were there. It was literally biblical with rivers running down the streets. Climbing Sydney harbour bridge in an absolute monsoon was still pretty epic though and, amazingly, on the first Saturday morning of our trip it was dry for parkrun!
Slight detour here though. Back in November 2013 I ran the New York marathon and, through the power of social media, had made a load of FaceBook friends from a group very aptly named, New York Marathon 2013. It does exactly what it says on the tin! The group had arranged to meet for a picnic in Central Park the day before the marathon and those FaceBook friends became friends in the flesh as friendships were forged that remain strong to this day. Our trip to Australia gave us a chance to catch up with the Australian contingent, Stephen, Jane and Giovanni (who very kindly let us use his apartment overlooking Darling Harbour for a couple of nights, what a sweet and generous man).
parkrun Australia number 1 was North Sydney who were expecting us as we approached the start area when run photographer approached us and said you must be Tony Collier! That was a bit surreal but it turned out that one of our home parkrun Run Directors had pre-warned them of our arrival. We were welcomed so warmly, it was wonderful and I was asked to speak to the runners before the start which led to an impromptu prostate cancer awareness speech. Never one to miss an opportunity eh?
Even better was that Stephen arrived to meet us, promptly ran a very speedy top 10 finish 5k before jogging back to encourage me home. Unfortunately this was a day of power outage so I found the run a real struggle but I got round, eventually.
It was great spending time with Stephen and Giovanni in Sydney. Their friendship and hospitality meant so much to us. But we would move on to parkrun Saturday number 2 in Newcastle, NSW meeting up with Jane for dinner the night before and for breakfast post parkrun. Jane is a classy runner and a lovely lady and she ran the parkrun with Tracey whilst I tried for an improved time. The weather here was amazing, unbroken blue sky and very hot but I got round the beautiful out and back course in just over 27 minutes.
Again, the RD at Newcastle was expecting us leading to yet another impromptu awareness talk!
parkrun 3 in Australia took us to Tasmania to visit relatives that we hadn’t seen for decades. We decided on Queens Domain parkrun which was stunningly beautiful but a hilly out and back course. Decent time, just over 27 minutes and back in time for breakfast. On this occasion news of our arrival hadn’t reached them so I escaped with relative anonymity.
We returned to the UK in late February and I managed my only race of the year, a low key local race, High Legh 10k. This was a bad day at the office and the lack of running plus holiday weight gain took its toll.
There were plenty of other races planned but then Covid struck and lockdown number arrived on 23rd March and that was the end of “normal” running for the rest of 2020. All club activities suspended, races cancelled or switched to virtual races and only one exercise session per day allowed. Running really didn’t seem important and I pretty much lost the plot for the next month or so. It became obvious that I was running with no aim or target, nothing to train for and no one to train with so what was to be done?
I chatted to my friend Kevin Webber. Kev had had the same diagnosis as I but three years earlier and at a lot younger age. Kev has been a great help to me since my diagnosis and really encouraged me to step outside my comfort zone and, between him and Tracey, we decided that a running streak would be a good idea and, on the 1st May, I set out to try to run at least 5k every day.
May was very hot! Some of those 5k’s left me in sweaty messes but I got them done, 113 miles in total. Not fast but done!
1st June came and I knew it would be tough to sustain at least 5k every day so the streak became a run/hike streak. One day would be hiking (proper hiking, not just going for an amble), 3 days of short runs and 3 days of longer runs. Some days ended up with a hike and a run which was tough but I was starting to enjoy it and getting a bit of mojo back.
As I’m writing this, in mid-January 2021, the streak is 264 days long with nearly 1100 miles covered. How long will it go on for? Right now the aim is a year and 9 days taking me to 9th May and the anniversary of my cancer diagnosis. After that, who knows?
I’ve mentioned running club activities being suspended and I thought it would be a good idea to keep us all connected as best we could so I arranged our first virtual relay race which went brilliantly and then club mates took over organising the challenges which included the London marathon 2.6 challenge, trying to run 2600 miles in 26 days. Later in the year at the start of lockdown 2 we would do 2.6 challenge number 2 trying to run 2600 miles to the North Pole in 12 days (signifying the 12 days of Christmas).
Massive credit to David who organised the challenges and the rest of the club for taking part. Amazingly we raised over £5,000 for various charities during the year and made headlines in our local press. Also great credit to Andy Dooley for sending training plans through each week even though he was ensconced in Lanzarote.
Between the 2.6 challenges though we were briefly allowed to resume club activities but in a Covid secure environment with risk assessments and a detailed plan to run together whilst keeping both our club members and members of the public safe. I assumed the role of Covid compliance officer, drew up a plan and got us up and running as well as helping other clubs with their resumption plans.
I think this period of running as a club with restrictions on numbers and under a Covid compliance plan, actually proved to be one of the best periods in the clubs history with everyone pulling together and run leaders really committing to making club runs happen. It may even have given us a blueprint for the future of the club. One thing that is very certain is that I’m incredibly proud of everything that Styal Running Club and its members achieved in 2020.
Edit: very remiss of me not to mention Tony Bennett. In 2019 I ran 970 miles to represent the 970 men who die of prostate cancer every month in the UK. Sadly that’s risen to 1000 but I just couldn’t quite achieve that mileage although I could get the 970 again. Tony heard about this and stepped in to run the final 30 in the last few months of December despite not having run for 2 months!
As a late starter to running at the age of 45 I soon got addicted to chasing PB’s and getting faster and faster.
When I was one of the founding members of Styal Running club in 2006 little did I know where it would take me and what it would cost (a small fortune but well worth it!).
Why I originally started to run and why I run now boils down to the same basic reason, health. I started to run in 2002 because I had a medical and they told me I was borderline clinically obese and my blood pressure was so high I’d be on drugs for the rest of my life (oh the irony!) if I didn’t do something naturally about it. Nowadays I also run for health reasons but more about that later.
When the club started there were runners who were a bit faster than me and I’m very very competitive so it was a natural aim to train harder, reel them in and get faster than them. Then my running buddy, Andy, who I ended up running on three continents with, joined the club and he was a good bit faster. Still, I like a challenge! Every time I got close he went faster still. His half-marathon PB was 1.35.35 and mine was 1.36.36, pretty decent for two blokes in their mid 50’s, so I knew I wasn’t far off and one day everything clicked into place and I nailed an amazing half marathon despite the hangover from hell. No idea how I ran that fast and never got near it again!
Andy and I ran many marathons together from 2007 through to 2017. Starting in Chicago in 2011 and taking in marathons in Europe and the Tokyo marathon in Asia. Andy was unfortunately handicapped by a bad hip so I usually managed to finish a few minutes ahead with one exception when we ran Frankfurt marathon and both had challenging days. Andy pulled ahead with about a mile to go although we had leap frogged each other pretty much from half way. I could still see him though and I managed to catch him and cross the line together. We had identical chip times to the second but his gun time was 1 second fast than mine and that’s what counted in the age group race so Andy won. Always knew his big feet would give him an advantage at some point. We were both a bit gutted to have missed a sub 3.30 by 7 seconds though. Not too bad I suppose for a bad day especially given that we’d had the journey from hell just to get to Frankfurt thanks to Lufthansa.
We’ve both run, but not together, in Australia and I’ve run in Africa so 5 continents for me and I’m not doing the cold ones!
As to what it cost, God only knows and it doesn’t bear thinking about but we’ve had some amazing club trips around the UK, Europe and further afield and supped a lot of beer. A true drinking club with a running problem.
As it happens, some of the best trips were in the UK. Who can forget chasing trains in Tywyn mid Wales and wearing fluorescent wigs and tutu’s whilst running around Denbies Vineyard in Dorking where there were wine stations instead of water stations?
So many funny stories and I’ll save them for the book but one of the funniest was at Race The Train in Tywyn. This is a really tough run chasing the Talyllyn railway train out and back over 14 miles of the most hellish terrain. Only 10% of the field beat the train and I was never good enough to do so. The race is an afternoon start so we could have breakfast at the hotel and then head over to race HQ. Chas was another of our founding members and to look at him you wouldn’t believe how good a runner he was. A lovely old Welsh lady was serving breakfast and she asked what we were doing and we told her we were racing the train. She looked at Chas and, in her beautiful Welsh accent said “Even you?” You can imagine the hysterics that we were in but she went one better the following morning at breakfast when Chas showed her his medal and said “Look, I finished” only for her to retort “I know, I passed you!”
I’ve digressed though! Back to why I run now and, as I said earlier, it’s to do with health. When I was diagnosed with stage 4 prostate cancer in May 2017 and was told I may only have 2 years to live I really thought my running days were over.
I’m blessed that I can still run although for at least a couple of years I mourned the runner that I had been and hated the much slower runner that I now was.
The treatment for stage 4 prostate cancer is to remove testosterone and that has far reaching side effects that effectively emasculated me as a man and as an athlete. Side effects as far as running goes have been:-
Why do I run then?
Firstly because it’s a massive part of my life and my running buddies mean the world to me but, secondly, running really helps dealing with all those horrible side effects as well as maintaining my mental health which took quite a hit with a terminal cancer diagnosis and, even now, the black dog of despair can and does descend. A run always helps though.
I suppose that there is another reason. Maybe I’m trying to outrun the cancer. I certainly think it will prolong my prognosis by staying as fit as possible. It also gets me out of Mrs C’s hair!
So carry on running folk, KOR!
Here is my latest blog about parkrun and 5K Your Way published via prostatecancer.net https://prostatecancer.net/living/parkrun-awareness/
My latest blog published via prostatecancer.net
I admit it, I never truly got parkrun and it took a life changing event for me to really understand the ethos.
I didn’t start running until I was 45 and when I was 50, in 2007, I ran my first marathon. Swearing “never again”, I went on to say “never again” another 19 times between age 50 and 60!
As it happens parkrun was starting to really take off just as I started marathon training.
What was my issue with parkrun then?
Well I couldn’t possibly do a 5k “race” on a Saturday morning and then do a 20 mile training run on a Sunday and that was my epic failure, not recognising that parkrun wasn’t necessarily about racing, it’s so much more. Saturday mornings for me used to be a short recovery run of 4 or 5 miles and I could easily have done that at parkrun but no, if I was doing 5k I was going to race it!
My early experiences of parkrun were when I was leading a Couch to 5k group that would graduate at Bramhall parkrun and I ran alongside that year’s cohort to encourage them. I didn’t even register a time because I didn’t want a slow time on my record. Totally wrong and so different to the true ethos of parkrun.
Looking back I ran 5 parkrun’s in 2015 and just 16 in 2016. I had a best time of 22:17 and a top 10 finish. In early 2017 I ran 22:45 just before my 60th birthday.
Then disaster hit when I found out in May 2017 that my runners “groin strain” was actually terminal prostate cancer and I might only have 2 years to live. The “groin strain” being stress fractures of the pelvis where the cancer had eaten into my pelvic bone.
Did this signal the end of my running life? No, but it did signal the start of a love affair with parkrun.
I was told that I would be able to resume running but I’d be a lot slower and should avoid running long distances. The treatment would remove testosterone and this would have a massive impact on athletic performance.
After letting the pelvis heal I resumed running in July 2017.
Pre diagnosis I’d run 24 parkruns in 2 years. As I write this in August 2020 I’ve run 136, 124 in just under 3 years post diagnosis when Covid suspended parkrun worldwide. Yes, I’d got the parkrun bug.
As expected the treatment started to really impact on times. I was still managing times in the 24’s up to September 2017 and then there’s a clear pattern of times reducing to the point that I’m now happy with a time in the 27’s. I now realise that that is what parkrun is all about. It’s totally inclusive, non-judgemental and, most importantly it’s not a race, unless of course you want it to be.
For me racing lost a lot of its importance. I was just desperate to be able to continue to run.
I started to take part in Wilmslow parkrun most weeks and got to make loads of new friends and realised that parkrun is much more than just running. It’s a real community of friends and the best bits have often been having a pre or post run chat and a coffee.
The community at Wilmslow have been so incredibly supportive of me on my cancer journey to date, encouraging me and, although they wouldn’t have known it, helping me through some real dark days where my mental health was in tatters through dealing with my diagnosis. I had so many kind and positive words from fellow parkrunners and the amazing volunteers that would keep me going on days when the cancer related fatigue was making running a real struggle. This for me is the essence of parkrun, everyone encouraging everyone else from those at the pointy end to those right at the back. What better sight is there at parkrun than seeing the final runner finish to the biggest round of applause of the day?
I’ve now completed 21 different parkruns in 5 different parkrun countries, England, Wales, South Africa, Italy and Australia and had it not been for Covid 19 I’d have added Germany and Holland in 2020.
I also love volunteering and have volunteered now on 44 occasions. There’s nothing better than marshalling by the first bridge at Wilmslow parkrun and encouraging runners going in all directions. I think, for me, this is the best part of parkrun. After all, running hurts and volunteering doesn’t.
Then parkrun really went up a notch for me in its importance when, in October 2018, I heard about the amazing organisation that is 5k Your Way.
I’d continued to run since my diagnosis because it had a massive positive impact on my physical and mental health and I remain convinced that staying fit will extend my prognosis. It also enabled me to take control of my illness and do my best to combat it. Then here was an organisation, 5k Your Way, doing exactly that. Encouraging people living with and beyond cancer to continue or get back into exercise by walking, jogging, running, volunteering or simply being part of the parkrun community on the last Saturday of the month and then heading off for a coffee where we could all support each other.
5K Your Way really is a running group with a difference, a support group with a difference and a coffee morning with a difference and it fits so well with parkruns ethos of providing exercise for all in a fully inclusive event.
I took the step of contacting 5K Your Way to understand what would be needed to set up a group at Wilmslow and had an exchange of communications with the amazing Lucy Gossage, co-founder and international Ironman triathlon champion and we decided we could make this work. The next step was to approach the parkrun core team. Would they support this? I can only say that I’ve since had nothing but amazing support and encouragement from the core team and all the volunteers. They truly get and understand the value that 5K Your Way brings and have been right behind me ever since. There is however a Wilmslow parkrun Run Director who is desperate for Lucy to attend Wilmslow parkrun. No pressure Lucy!
I was also blessed to know Sara Harris another Wilmslow parkrunner who is a community paramedic for the North West ambulance service and we chatted about 5k Your Way and I was delighted that she was positive about being my co-ambassador at Wilmslow. She has been an absolute delight to have on board and has brought so much energy and enthusiasm to the role as well as cake!
I worked really hard leading up to the launch, having lots of conversations with cancer health care professionals across Greater Manchester. What was amazing was that they really understood what we were trying to achieve and have been amazingly supportive as well as regular attendees at 5K Your Way. There are far too many to mention them all but it would be remiss not to mention Matthew Evison a lung cancer specialist whose Son Jacob became an absolute star at Wilmslow 5K Your Way. We’ll never forget the videos that Matthew took of him and Jacob taking part in 5k Your Way, especially the outtakes version.
Then there is Claire O’Rourke, Associate Director at GM Cancer and herself an ultra-marathon runner. She has been an amazing supporter as has her Husband John, himself now dealing with a double cancer diagnosis. Both have been regular attendees despite living a long way away and really enjoy chatting with our 5K Your Way community over coffee.
Getting to know so many people in the GM cancer community also led to me becoming involved with the most amazing cancer support pilot in GM, Prehab4Cancer, as patient representative. P4C is proving the value of Prehab for people newly diagnosed with cancer and then how rehab supports them. I’m very proud to be involved with P4C as it’s a scheme that really emphasises the importance of exercise for those living with and beyond cancer, a key plank of 5K Your Way and I see 5K Your Way as a natural extension of P4C.
We launched at the end of February 2019 and have had regular attendances of 15-20 and as high as 40. We’ve helped lots of people and I think that Matthew Evisons comments really summarise the amazing feedback that we’ve had:-
“Loved walking with my lad @cancer5kYourWay today. Jacob had leukaemia aged 4 months old & will need to learn the value of exercise in combatting long term effects of chemotherapy.”
“5KYW is fast becoming a very special event for us Evisons! A chance for me & Jacob to spend one on one time together playing silly games. A time to reflect on his illness, his recovery & the importance of #physicalactivity for him as he grows up.”
“Your hard work is helping those affected by cancer and it’s inspiring to see. The impact of this across the country is huge!”
It’s fair to say that I’m a complete convert to parkrun and incredibly grateful for it embracing 5K Your Way.
#loveparkrun
May 2017 wasn’t kind to the Collier family. I remember vividly, as if it was yesterday, receiving a telephone call from my Brother Peter on Friday 5th May 2017 to tell me that our Sister, Fiona, who had been living with breast cancer for several years, had been told that she had less than 12 months to live. We were all devastated and it put my niggling groin strain into context. I arrived at the dentists with red puffy eyes and had to explain why I was so upset. That was a tough weekend but it was going to get much worse.
I was training to run the Comrades ultra-marathon, a 56 mile race in South Africa with 6500 feet of climbing and in high temperatures. I’d completed the race the previous year but was going back to have another go and try to bag a back to back medal. The race goes from Durban to Pietermaritzburg one year, an up run and in alternate years runs in the opposite direction, a down year with only 4000 feet of climbing. You get a special back to back medal if you complete consecutive up/down or down/up runs. Injury had scuppered my up run attempt in 2015. I’d completed the down run in 2016 and was keen to have a go at the up run on 4th June 2017 in my 60th year but this groin strain wasn’t going away.
On Monday 8th May 2017 I’d arranged to see a specialist sports injury Doctor and we’d pre-arranged an MRI scan. You could tell by the looks on the Doctors and radiologists faces that something was wrong and it got very worrying when I was sent for a chest x-ray and blood tests there and then and asked to attend a private hospital for a CT scan the following day. Even an idiot like me knew that you don’t need those for a groin strain. That Monday night was a sleepless one as we had no idea what was going on. Mr Google (never go there in circumstances like this) had convinced me that it was probably Lymphoma and that would have been awful.
Tuesday 9th May I headed off for the CT scan having spent loads of time trying to get BUPA to give me an approval number for the scan. That was mega stressful given what I was going through.
The scan was a full body scan and I was there for hours. However it got done and I headed off to my usual running club Tuesday night and tried to forget about what was going on. As we were leaving the club headed for a beer my mobile rang but with no number disclosed so I refused to take the call but a minute later it rang again so this time I answered and that’s when life changed forever. It was Dr Rogers the sports injury specialist and he had phoned to tell me that he was fairly certain that I had Prostate Cancer. It’s unusual to be given this type of news on the phone but he wanted me to get through the diagnostic process as quickly as possible which would involve more tests and so that’s how it had to be. In a pathetic attempt at humour I said “I guess that means I won’t be doing Comrades then?” No was the reply, you’ll be in treatment by then once everything is confirmed.
Blood must have drained from my face because Emma, one of my club mates, asked if I was okay and I told her what I’d just been told and she gave me a big hug. All I could do was rush to the car and drive home 15 minutes in a state of utter terror and floods of tears to break the horrendous news to Tracey my wife. Cue more tears with me being totally pathetic and pushing Tracey away and telling her to leave me and go and find someone who could look after her properly. That was a major mistake, she nearly killed me!
I can’t tell you what it’s like when you hear those words “You’ve got cancer” but worse was to follow.
Dr Rogers got me in to see an Urologist very quickly and also all the other tests done, bone scan and biopsies.
This was a truly horrendous time. I knew absolutely nothing about Prostate Cancer or how serious it can be. I’m pretty genned up on it now! Tracey and I spoke to our friend Helen who is a cancer nurse specialist and she was very re-assuring telling us that there’s lots that can be done nowadays but in no circumstances go to consult with Dr Google. Sound advice that was taken.
Some people really don’t like the scans but in the space of a few days I’d had three. I didn’t find them a problem apart from stopping myself shaking long enough for the scan. I spent most of the day shaking to be fair. I was in a state of abject terror.
D-day arrived for our meeting with the Urologist, Richard Brough who confirmed what we feared that I had prostate cancer but, because it had spread outside the prostate with suggestion from the MRI scan of metastatic spread to the bones, that it couldn’t be cured although it was treatable. The treatment was basically to prolong my life. He explained very clearly that my prognosis depended on a man’s response to treatment and that the longer the cancer is controlled by the first tier of treatment then the longer I’d survive I’d survive on the 2nd tier of treatment and so on. He told us that my worst case prognosis was 2-3 years with a best case of somewhere up towards 10 years but this was very variable and new treatments were emerging all the time. I was to have a bone scan and biopsies. The bone scan would show the extent of spread in the bones although I didn’t find out how bad the spread was for about a year. I was to start on a drug, Bicalutamide, immediately and this would be taken in pill form for 28 days. After 14 days I was to have what I later found out to be an Androgen Depravation Therapy by injection and I would have this 3 monthly forever. ADT effectively stops production of testosterone which is what cancer feeds on and would starve the cancer of fuel and largely kill off the tumours but with awful side effects. I was to be referred to an Oncologist to consider up front chemotherapy which had been shown in trials to have a survival advantage in the group of men that I now belonged to. I wish someone had asked if I wanted membership of this club as I definitely wouldn’t have volunteered to join!
Tracey asked Mr Brough how long he thought I’d had the cancer and he said 10 years! Wow, that was a shock. During that 10 years I’d run 19 marathons and one ultra-marathon.
As you’ll imagine we left that meeting in bits. Being told that you’ve got cancer is bad enough but being told that it’s incurable, effectively terminal, is utterly indescribable. Our world had fallen apart and I was absolutely terrified of the future and what it held.
The biopsies are quite unpleasant and, in my case, were taken trans-rectally so there is quite a serious risk of infection so they are very careful and give you oral antibiotics for a couple of days before and after as well as by injection on the day. It’s a very unpleasant experience as they snip pieces of your prostate away. I’d been warned to expect 12 samples to be taken but they only actually took 5, 3 from one side of the prostate and 2 from the other. When I asked why only 5 I was told that they were pretty certain what they were going to find and they needed the samples primarily so that they had the histology as that would decide future treatment options.
All the results came through and Mr Brough decided that he’d like to see us again to discuss them but it seemed pretty pointless so we asked to be referred directly to an Oncologist so that I could get into treatment as soon as possible.
Then the most difficult and emotional thing I’ve ever had to do in my life and I hope never to do anything ever again that even remotely matches this event. I had to ask my adult children to come round that evening but I couldn’t tell them why. “I’ve just got something I need to share with you both” Yeh, right! Telling the children that I’d got incurable cancer was incredibly challenging. There were lots of tears and hugs. Needless to say they only got an abridged version of the truth. One thing at a time for now seemed the right way.
On 31st May we should have been flying to South Africa. Instead we were meeting the man in whose hands I would put my life, Dr John Logue at The Christie in Manchester. John was very calm and re-assuring. Yes there was still a lot he could do to keep me alive as long as possible but he also managed our expectations in a very professional and down to earth manner. I’ve grown to trust John implicitly. I like his manner and the fact that he understood what this would mean to me as an athlete (he’s a cyclist). Yes I would be able to run still and I should exercise regularly as it would help me cope with the treatment side effects. However, I would be a lot slower and would struggle to run as far. He also explained the side effects of the treatment. Loss of muscle mass, which is why running would be so hard, loss of bone density, weight gain, loss of body hair etc.
He went on to explain that I could kiss goodbye to erections but it probably wouldn’t matter as I’d have no libido in any event. “Wow John, anything else you want to throw into the melting pot?” “Yes, Tony you’ll experience penile shrinkage so you need to keep exercising your old fella, use it or lose it”
Effectively I was to be totally emasculated as man and as an athlete but eh, at least I’ll still be alive!
Turns out that the groin pain was actually stress fractures of the pelvic bone where the cancer had eaten into the bone and I’d carried on running. The reality is that, if I weren’t a runner, I wouldn’t have found out about the cancer for a good while and I’d probably be dead now rather than writing this blog. I’d had no symptoms whatsoever and that’s particularly scary given that they think I’d had it for 10 years and it should serve as a lesson to all men about being proactive and getting a PSA blood test done. Don’t take no for an answer from your GP. If I’d had a blood test every year from age 50 I’d have been able to have curative treatment through much earlier diagnosis.
The next phase would be chemo. 6 infusions over 18 weeks starting in August. Bring it on was my thought process. This was going to extend my life and I certainly wasn’t scared of it.
When we left John that day we were in bits but Tracey said on the way out “Can we please carry him home with us on our shoulders?” so reassuring had he been. We’d asked John where we got emotional support as, frankly, we were a complete mess. He signposted us to the Maggie’s cancer support centre. I’d never heard of it but it was to become a sanctuary from the cancer madness for us. A place where we could sit on a bench in the garden, hold hands and cry but always knowing that professional support was at hand if and when we needed it. We met the centre head Sinead and she told us that we should adopt the mantra that I was living with cancer rather than dying of cancer. It took me a while but I did get there many months down the line. In the meantime Maggie’s became my go to place when I was at The Christie, which would be every 2-3 weeks over the next year or so. I would pop into Maggie’s, have a chat and sit quietly and gather my thoughts. Little did I know then that Maggie’s would become such a massive part of my life.
Then enter the running community with help and support.
My Styal RC club mates were immense and have been ever since. They are such a great bunch of people and I love them to bits.
I’d let all my Comrades friends know that I wouldn’t be going to South Africa and why and get many messages of support. Every year since I’ve followed their Comrades journeys avidly and they’ve often messaged me to say that they were thinking about me. True international friendship exactly what you’d expect from Comrades. One particular act of kindness meant so much to me. I really can’t put into words how much it meant but it gave me a massive lift at a really difficult time and I’ll be forever grateful for it. I’ve mentioned Duncan Ross the Emirates airline pilot who I’d bumped into totally by accident whilst we were both running around Manchester airport. His then partner and now Fiancé Gerda Steyn would go on to win Comrades 2019 and set a new up run ladies record. For my 60th birthday back in February, Tracey had arranged for a plaque with my name on it to be put on the Comrades Wall of Honour but I was destined not to see it. Well Duncan took the time to find my plaque, take photos of it and then find a way of messaging them to me. How awesome is that?
At some point in mid-June I started receiving messages from running friends all over the world alerting me to a new treatment for stage 4 prostate cancer that had been announced at a symposium in Chicago and was proving to be very effective producing results at least as good as upfront chemo but without the quality of life impact. This was discussed with John who thought it had merit for me and he persuaded BUPA to fund it for me.
The drug, Abiraterone, has to be taken in conjunction with steroids. It’s usually 2, daily, 500mg pills. However, in a percentage of men it can cause liver function to go pear-shaped so it means regular blood tests to assess the impact on the liver. Regrettably I was one of those men and my liver count went up to over 300 compared to a normal range of 10-40.
At one of the 2-3 weekly blood tests Tracey said to John “What about Tony’s alcohol intake given his liver function issues?” John’s response was classic John “I’m from Glasgow, what do you expect me to say?” before turning to me and saying “Carry on as before”. The look on Tracey’s face was a picture and she turned to me and said “You’re not!”
Thankfully by reducing the Abiraterone dosage to 500mg daily my liver function stabilised and has stayed in the normal range for two years now. Even better still my PSA hasn’t been recordable for over two years which is amazing.
The prostate kicks out an antigen into the blood stream and, if there’s a problem with the prostate, the prostate specific antigen (PSA) is higher. My PSA level at diagnosis should have been no more than 4 for a man aged 60 but it was 129. Not recordable is an amazing outcome and means that I’ve responded really well to the treatment! Long may it continue.
The 12 months after diagnosis was truly awful. Your head constantly goes to a dark place where all you can think about is death, not seeing your Grandchildren grow up, not getting to walk your Daughter down the aisle but you do come out the other side apart from the odd melt down.
Amazingly, it wasn’t until 12 months after my diagnosis that I discovered how far spread my cancer was. I actually got a copy of the bone scan and it’s very scary. Large mass in the pelvic bone with smaller masses in the hips both rear and front and then lots of smaller tumours in my spine, ribs, neck and skull. It’s a horrible image that I use in my private awareness talks as it really hits home what happens with late diagnosis.
The one constant was running and I got back to it once the pain had subsided. Yes, it was exactly as John said. Bloody tough! I went from just behind the fast runners at my club to just ahead of the slow runners. Dealing with all the previously mentioned side effects plus treatment induced fatigue, hot flushes and hot sweats was brutally challenging and I struggled to get used to the new (ab)normal always comparing my running with what I used to do instead of accepting it as something I couldn’t do anything about. I’m better now than I was and find bad runs really mentally challenging but at least I’m still able to run for now and I’ve future proofed my connection with the club by qualifying as a coach in running fitness.
I still need challenges though and I decided to run the Manchester Half Marathon in October 2018 raising over £4,000 and being awarded their fundraiser of the month award.
I’d also decided to use my London Marathon Good For Age time for an over 60 that I’d run in Dublin pre diagnosis and run London again in April 2018 but run it as a fund raiser for Prostate Cancer UK who do such amazing work supporting men with prostate cancer and funding valuable research that might prolong my life.
I knew London was going to be a major challenge this time. Training was punctuated by runs where I’d set off to run say, 16 miles, but get hit by a wall of fatigue after a couple of miles resulting in a walk back to base in floods of tears berating the cancer for taking everything away from me.
I got to the start line though only to experience the hottest London marathon on record. The worst possible weather when dealing with hot flushes and hot sweats as well as deep fatigue. My average marathon time over 15 marathons where I was trying for a time was 3:30 and my average for the World Marathon Majors was 3:27 but those times were something I could only dream about. After 5km I was so hot I though my head was going to explode and took my first walk. After that it was a run/walk all the way.
Never have I been so grateful for the amazing London marathon crowd support. Running nearer to the back of the pack is very different to being in the front third and it gives you a certain humility when you see how hard the slower runners work and for much longer.
I eventually crossed the line in a massive personal worst of 5:07 but I’d raised £13,000 for PCUK and this was the marathon, out of all 20 that I’d run, of which I was most proud. It was a real triumph of gritty, stubborn, bloody minded determination. Something that had stood me in good stead in my prime and when running Comrades.
Amazingly several of the New York marathon 2013 group were running. Jane Baker who would earn her World Marathon Majors medal that day. My lovely friend from Belgium Pascale Billiau, Stephen Orr and others and we met up on the Saturday in Hyde Park for a picnic. These friendships had all started with that picnic in Central Park on a Saturday afternoon in November 2013.
There were even supporters from the NYC group in town and we knew that they’d be waiting for us on Tower Bridge. Amazingly co-incidentally Pascale and I arrived at the cheer point at exactly the same time. It was truly meant to be and one of my favourite marathon photos of all time.
That was me done. 20 marathons and time to call endurance running a day. It had just become too hard and 20 was a perfect round number. It wouldn’t be the end of me as a runner and I’ll cover my exploits from 2019 onwards in a future blog.
This was incredibly difficult and emotional to write but it was also therapeutic. I hope it wasn’t too tough a read and gave you an insight into my post diagnosis life. I also hope that it will serve as a reminder to everyone to make sure that all men over 50, over 45 if there’s a family history or the man is black, go and get a PSA test done. If I’d been tested every year from age 50 I may still be running marathons rather than writing this blog and facing a premature death.
Sadly my Sister, Fiona, passed away in the November of 2018. She got nearly exactly 18 months from that fateful day in May and we all miss her so much.
One final positive message is that I’ve responded really well to treatment and whilst I stay stable on my current treatment regime all sorts of new drugs/treatments are being developed that will keep me alive for many years and I never give up hope of being here for important milestones. I’ve got a golden wedding anniversary in 10 years’ time and the wife will kill me if not there for it!
After the devastation of injury preventing my dream of finishing Comrades 2015 I was determined to have another go. I had let down my sponsors and The Children’s Adventure Farm who I was fundraising for in 2015 and I had to put that right so planning started for Comrades 2016.
I got my entry in as soon as entries opened and then set about qualifying which amazingly took me back to Amsterdam in October 2015 where my marathon journey had started back in 2007. My Brother in Law, Dave, who lives in Amsterdam, was running his first and last marathon in his now home City. When he said “never again” afterwards I think he actually meant it! My Wife, Tracey, and I entered the 8k race as we wanted to be there to support Dave. About 6-8 weeks before the race I decided to switch from the 8k to the 42.2k race and plod round, given that I hadn’t done any endurance training for months, and just bag any time that got me into Comrades 2016. Only idiots attempt to run marathons on virtually no training, right?
I ran with Dave until about 20km and then he disappeared into the distance. I reached half way and realised that I could run the second half in 1:50 and get a sub 3:40 and a pen C seeding for Comrades. Taking things fairly easy I finished in the Olympic stadium in 3:33:50. Unfortunately I’d passed Dave about 2-3km from the finish as he’d been cramping up but he came in not far behind. The only time this old man would ever beat Dave!
Amsterdam really is a great marathon. Running into the Olympic stadium underneath the Olympic rings is a real highlight. I’d be back again in 2019 but this time I’d stick with the 8k as you’d never guess I’d been a half decent endurance runner by late 2019 such was the impact of treatment that removed your male hormones. Ladies have way more testosterone than I do nowadays and for us fella’s it drives every aspect of our lives. I no longer had that drive but I still had the desire to carry on running.
Comrades training started in January 2016 but this time I decided that back to back long runs on Saturday and Sunday were to be avoided so that I actually got to the start line injury free. There would only be one marathon in the first half of 2016 and as I already had a C seeding I really would take it easy whilst running Manchester again, bagging a time of 3:43:49.
The really long training run of close to 40 miles, running 4 times around the last 10 miles of the hilly Macclesfield half marathon course, came around again. I was going to try to run for over 7 hours and this was vital to my confidence given that it was the run that had really found out my injury in 2015.
Again my club mates gave me fantastic support with some of them running either one loop or two with me. The last loop was epic. I had a group of 5 or 6 running with me and I was pretty jaded by now. I’d been power walking all the really steep sections, a tactic that I knew I’d have to adopt on race day. We set off and the heavens opened with the biggest hail stones you’ve ever seen. They really hurt and were as far away from the Comrades weather as you could possibly get! We had a good laugh about it at the time and I was very grateful to have my mates with me when I finished. I’d run 38.66 miles at an average pace of 10:19 per mile and climbed 2,357 feet. My post on Strava that day said “Can’t describe how hard running 38 miles is, even running it slowly” Bode well for Comrades where I had another 18 miles still to go!
On 8th May my Strava post said “A real struggle! The recent high mileage has emptied the tank and it was warm! Need to cut mileage big time now! Comrades in less than three weeks!” That was an 18 mile run at 9:28 per mile pace. At least I listened for a change. It was time for a real taper down.
May 21st I popped over to run Pennington Flash parkrun as loads of Flashers were running Comrades in 2016. Ran a conservative time of 23:51 and had a good chat with the guys and looked forward to seeing them in South Africa. I’d die for a sub 24 minute 5k nowadays!
We arrived in South Africa on the Wednesday to try to acclimatise to the heat. Expo on Thursday to collect race number. Nerves really jangling as it was all getting very real now.
I bumped into someone outside the expo that I’d met in the most unusual circumstances, Duncan Ross who is an airline pilot for Emirates. Duncan had flown into Manchester Airport and was out on a run and came running towards us whilst we were out on a club run. He noticed my Comrades shirt or hat, turned round and started chatting about Comrades. We have been connected ever since and his then partner, now fiancé, Gerda Steyn is a top South African athlete. She won the Two Oceans marathon in 2019 and then went on to win Comrades and set a new female up run record the same year of 5:58:53! I’d actually bumped into Duncan and Gerda at the end of the Dublin marathon in 2016 where Gerda had run some ridiculously quick marathon time. Duncan was to show me a massive act of kindness in 2017 that I’ll be forever grateful for but that’s a story for another day.
This time I would have a jog around North Beach Durban parkrun along with over 2,000 other runners, the day before Comrades, in 26:59, another time I would die for nowadays. It was a great experience trying to be part of a world record parkrun attendance attempt.
We decided not to do a course tour this time round. It had scared the crap out of me in 2015 and I remembered it pretty vividly.
We were staying in a lovely hotel right on the beach in Durban and, as this was a down year, it meant a very early start on race day. Up for breakfast at 2.00am and then over to catch a bus to Pietermaritzburg for the longest bus journey ever. There was a lot of adrenaline pumping around the athletes on board. We arrived at 4:30am for the 5:30 start. Final ablutions done and then head into the starting pen. The awesome, spine tingling experience of the start, as I explained in my last blog, and then we are off.
It’s chilly in Pietermaritzburg for the Africans at around 12c but it very quickly got a whole lot warmer and would hover around 28c for most of the day. Controlling body temperature is a major challenge.
Watching the African sunrise was incredible. It’s a really beautiful sight that Tracey captured perfectly in this photograph. Tracey was out on the course having a corporate hospitality day. Luxury breakfast and lunch, free bar (not much use as she is t-total) and hopefully arriving back in Durban to see me finish. Thankfully this time I wouldn’t be partaking of the free bar!
Comrades is a race that attacks all your senses. It’s a total rite of passage for all South African runners. You aren’t considered to be a “proper” runner unless you’ve run Comrades. Everyone comes out to support. It’s on TV wall to wall for the whole 12 hours of the race. The residents en route get out the Braai’s (BBQ’s) and you smell the bacon cooking for breakfast and then the meat at lunch time and as you pass them eating the food and drinking the cold beer its very enticing, it would be quite attractive to stop and sup a cold one but that was never going to happen, I was incredibly determined to finish.
I first caught up with Tracey, after her breakfast, at about the 17 mile mark. A quick photo and much needed loo break and we were back up and running again.
In part 1 I talked about National/International friendships and at 1 point in the first half of the race I caught up with Rebecca Parry a seasoned Comrades runner from the UK and we ran together and chatted for a while before leapfrogging each other for a few miles.
You need very clear tactics for such a long, hot race. Mainly set off slowly, power walk the seriously steep hills. It has to be a power walk though or you lose too much time. Stay hydrated and try to get nutrition on board. Aid stations are very frequent thankfully, around every 2km. Water sachets in troughs of ice. Grab two, pour one on the back of the buff, drink one. 1km later turn the buff round so that the cooler water at the front moves to the back and repeat another 44 times! I was rubbish at food but there was a plentiful supply. I’m told that the hot salted potatoes were very good but I didn’t take food at all. I relied on energy gels and sweet drinks available at the aid stations. I was sugared out by the end.
Passing through marathon distance and one of the brutal named hills, Inchanga, there are a series of huge climbs and you’ve still got 30 miles to go! I had decided to use a mantra “perpetual forward movement” to keep me going and in the dark moments it helped. One foot in front of another no matter what the pace.
Reach half way and the Wall of Honour and Arthurs Seat. Leave a flower on Arthurs Seat, guaranteed to have a good 2nd half now. Only 3 of the massive named hills left.
Meet up with Tracey at Kloof after her luxury lunch. Thank God, a bit of shade. After hugs and kisses there’s just under 30k to go, 59k already run, but including two of the famed named hills, Fields and Cowies and the bulk of the route is on the motorway with brutal undulations and absolutely no shade. Another tip I’d picked up was to watch out for the cats eyes. They are huge and a massive trip hazard.
The organisers of Tracey’s day tour told her that I was on target to finish in sub 9.5 hours and her next stop was the race finish inside the Kingsmead Cricket Stadium in Durban. She was expecting me to arrive by 3.00pm based on a 9:30 projected finish time but as the minutes ticked on past 9:30 she was getting increasingly terrified that I’d had problems. Well I had, I was bloody knackered! I’d run back to back 4.5 hour marathons on a brutally hilly course in 28c of heat and the last 5k from the outskirts of Durban to Kingsmead was the first flat bit of the run. It was the slowest 5k I’ve ever run/walked. I’d completely gone, nothing left, nada, nowt, zilch but I was going to finish no matter how long it took. In the end it took over 40 minutes to reach the stadium from the 84km mark. Running into the stadium is quite an experience. Straight down the middle to the finish? Of course not. One lap of the stadium playing to the crowd and then a short finish straight. I never knew cricket pitches were that big! It took forever to get round.
Crossed the finish line in 9:46 and was presented with a rose and my much deserved medal. I’d run 56 miles in searing heat on a brutally hilly course at just over 10 minute mile pace. I’d finished well inside the top 20% of the 50-59 age group and I was 59 years old and had fulfilled a dream.
Waddle my way to the International Finishers tent to reunite with Tracey. Grab some food and a cold beer. I was so looking forward to that beer but when I got it it was the sweetest lager and lime I’ve ever tasted. Utterly awful having lived for the previous 10 plus hours on sugary energy gels and sweet drinks.
Texted the family to say “I’ve only bloody well gone and done it!”
I savoured the moment, full of pride and beaming from ear to ear before I started getting cold as my body recalibrated its heat control and we decided that, rather than stay until the very end and the 5:30pm final cut off time, we’d head back to the hotel and watch it unfold on the TV. That was one of the most incredibly emotional few moments of my life. With 2 or 3 minutes left a lady entered the stadium with just a lap to run and her legs completely turned to jelly and there was no way she was going to get up and finish. Another runner stopped to help her which meant he also missed the 12 hour cut off and a medal. It was heart wrenching and led to many tears. Had to turn off at this point as I couldn’t stand any more emotion. Imagine running 56 miles and collapsing on the finish straight. I was utterly spent. Time for a much deserved beer, some food and an early night.
Monday morning the UK runners meet up for coffee and a photo. David Ross the UK ambassador organises all this and it’s fantastic apart from for those that didn’t finish like me the previous year.
A long boozy Monday followed, soaking up the sun before we headed off for another fabulous holiday, this time in Botswana. The medal didn’t come off for days though, it’s one of my much treasured possessions even if it’s no bigger than a 10p piece. It had been a dream for many years to win one and now I had one.
I wasn’t sure that I’d go back for another attempt but eventually the idea of another crack at the up run and the prospect of a final chance to win a back to back medal, awarded to those who complete consecutive up/down or down/up runs, became too great so I entered again.
I was 59 by now and would be 60 before the 2017 Comrades race and my age was starting to show in my times. I ran Dublin marathon in autumn of 2016 to try to get an early qualifying time and had a pig of a run to come in at 3:43:33. Okay, that was enough for a D pen seeding and it also got me a Good For Age time for an over 60 for the 2018 London Marathon but it was rubbish and easily the worst marathon where I was trying for a time. Also bumped into Duncan and Gerda after the race.
The turn of the year came and a niggling groin strain had started to develop. I ran the Anglesey half marathon in February 2017 and on a downhill section I experienced screaming pain from the groin for the first time.
Still, it was only a groin strain and us runners are hardy critters. We run through pain and it would wear off surely. It didn’t and I had a chiropractor treat me. She mentioned on one occasion that the lymph nodes in my groin felt a bit inflamed. I had no idea what that meant or its consequence. It would mean so much more in the months ahead though!
I ran Manchester and Paris marathons a week apart at the start of April as long training runs for Comrades. 3:47:59 and 3:49:31 respectively wasn’t too shabby but the groin pain was now being controlled by pain killers.
Early May bank holiday we went to Cumbria to see our new puppy and have a walk. When I parked the car for the walk I actually couldn’t get my right leg out of the car without being in a huge amount of pain and walking was agony so as soon as I got back I made an appointment to see a sports injury Doctor and we’d arranged an MRI scan. That was 8th May 2017. Surely a cortisone injection would sort it out and we’d fly out to South Africa on 31st May. Or so I thought!
I saw the radiologist and Doctor going in and out of each other’s offices for the next hour and, as I was the only one there, they must have been talking about me. I was still blissfully unaware of what was to come. I’d got round to thinking that the “injury” must have been worse than I thought and that Comrades and my back to medal hung by a thread.
Eventually the Doctor called my into his office and explained that the scan was showing something that he hadn’t expected but he needed some more tests to be done to rule out anything untoward so I was sent for a blood test and chest x-rays there and then. I noticed the handwritten letters PSA on the blood test form but had no idea what that meant so took little heed of it. I was told I needed to attend for a full body CT scan the following day, 9th May.
You can imagine how Tracey and I felt that night. It was utterly terrifying. Even an idiot like me knew that you didn’t need these tests for a groin strain but we still had little idea what was coming. That’s for another day and I’ll post the rest of the story tomorrow, 9th May, judgement day. A day that will stick in my mind forever. The worst day of my life and one that would change my life out of all recognition.
Following the theme of “It was someone else’s fault” the next phase of my running life was all down to a little old lady that we met on a walking holiday in the Italian Dolomites. For most of the walks we used a car or public transport to get to the start of the walk and then we walked in small groups, but this particular Sunday was the day of the Sella Ronda, a day when all the roads that make up the four Dolomite passes around the Sella massif are closed to traffic and open to cyclists to ride all or part of the passes. Of course we couldn’t use the car or public transport which meant walking as one big group from the village of Arabba otherwise we would never have met the lady that would have such a massive influence on the next 10 years of my life.
At the time I was training for my first marathon and running was completely consuming my life so conversation naturally got round to marathon training and it turned out that the “little old lady” was a runner. She had started running quite late in life, in her 50’s and by the time she was 60 she was an age group leader at virtually every distance. I asked her the fateful question “Which was your favourite race?” to which she immediately replied “Comrades” which turned out to be a 56 mile ultra-marathon in South Africa. I had never heard of this race so asked her to tell me all about it which she did and I fell in love with the idea of running the race assuming that I wasn’t totally rubbish at marathons. It was the germ of an idea to run Comrades that just grew and grew over the years and ultimately became the biggest bucket list item once I’d got the World Marathon Majors out of the way. I was desperate to have a go Comrades by the time I got round to it.
Having completed the WMM in April I decided that now was the moment to have a go at Comrades. I’d proved to myself that I was a decent standard endurance runner and if I was ever going to tick off this bucket list ambition it was now. Entries opened and I dived in, got confirmation of my place and immediately started crapping myself. “OMG what have I gone and done?”
One of the features of Comrades is international camaraderie and by the time I’d entered I’d already made a connection with a local runner, James Love, who I’d bumped into at a small local 5k race in Hollins Green, South Manchester in the summer of 2014. I spotted a runner decked out in Comrades gear, shirt and hat and this was only a week after Comrades 2014 so I had to tap James on the shoulder and have a chat about Comrades. What James told me about the race really cemented my ambition to have a go and he was the first of many runners I would get to know because of Comrades.
James is a parkrun regular at Pennington Flash and a seriously good runner. He also persuaded a lot of the Flashers, as Pennington Flash parkrunners are known, to have a go at Comrades and I got to know a lot of them over the following 3 years. I still pop over to the Flash to run parkrun and meet up with them from time to time.
Anyone who knows James will confirm that he never mentions Comrades, just like me, and never ever wears any Comrades gear. Of course anyone who knows James and I will tell you that that is complete bollocks!
The next step on the Comrades journey was to bag a qualifying time. To get in you had to be capable of a sub 5 hour marathon which was pretty easy for me but the quicker your QT the further forward you started and that is quite important as Comrades is a gun to chip race. To none runners this means that your race starts when you cross the start line and the further back you are in the field the longer it takes to cross the start line. Those starting in pen H may take 15 minutes to cross the start line and this might impact on their ability to meet the various cut off times along the route. If you didn’t reach a cut-off point by a certain time you were pulled out of the race and put in the sag wagon, a bus that swept up the slow runners.
Realistically the furthest up the field I was going to get was starting pen C and for that I needed a sub 3:40 marathon.
After London in April 2014 I’d eased back on training quite a lot but I entered the Chester marathon in Autumn 2014 with the aim of bagging a QT that simply got me into Comrades and then in the following Spring I’d really give it a go to get into pen C. As it happened I ran really well in Chester on the back of very little training and bagged a 3:33:26 time and that got me the QT I wanted.
Pressure off I could now focus on training for Comrades starting in January 2015. This would mean a lot of running. Standard ultra-marathon training plans have you running long back to back runs of over 2 hours on a Saturday and 3-4 hours on a Sunday and that’s exactly what I did. What a massive mistake that turned out to be!
I entered two spring marathons with the aim of running them conservatively as training runs.
First up was Rome and we had a big group of runners taking part from my club Styal RC. This has to be one of the most incredibly scenic marathons in the world as the route takes in virtually all the sights in Rome.
In previous parts of my running life blogs I’ve explained that I never noticed anything when I ran marathons. My friend Andy Dooley who I’ve shared most of my running life with used to say to me after a race “Did you see such and such?” and he was always amazed when I asked him what the hell he was talking about. Well, in Rome, I did notice lots of the sights. In fairness it’s pretty hard not to notice the Vatican when you are running down the road leading up to it and it’s directly in front of you!
A nice easy Rome marathon produced a time of 3:43:51 and so it was on to Manchester. The 2nd time I’d run my home City marathon but a completely different route to the first time in 2012.
This is where I made a major mistake. I’d been experiencing a few niggles on the outside of both knees. Classic signs of overtraining I was to learn and maybe a rest break would have helped but, instead, I went ahead and ran Manchester truly intending to treat it as a training run but felt amazingly strong and crossed the line in 3:26:22. Way too fast for a training run and boy was I going to suffer for that!
The next few runs were horrific with horrendous pain down the outside of both knees.
Still I trained on. I’d planned a long 40 mile, 7 and a half hour run which would consist of running the last 10 miles of the Macclesfield half marathon course four times with club mates running a loop or two to support me. This a very hilly route and perfect training for Comrades as I could dive into the boot of the car after each loop and treat it as an aid station to get on board fluid and food and it’s hilly and you’ll understand the importance of this when I tell you more about Comrades.
The first loop wasn’t too bad but half way round the 2nd loop I was seriously limping and the pain got so intense that I had to stop after two loops. This was a truly awful outcome. I desperately needed to complete this long run to give me the confidence that I could get round Comrades but it wasn’t to be.
A quick consultation with a specialist sports injury Doctor, amazingly the same Doctor that would diagnose my terminal prostate cancer two years later, and an MRI scan confirmed that my Iliotibial band was seriously inflamed. The IT band is a tendon that runs down the length of the outer leg from the pelvis to the tibia and basically my overtraining had meant that the band rubbing on the outside of bones in the knee had caused it become inflamed and it’s incredibly painful. The only cure was rest and a number of exercises. Perfect preparation for my dream race that I had been thinking about having a crack at for 8 years!
A lot rested on this race as well. I was running it to raise money for a wonderful charity, The Children’s Adventure Farm Trust who give holidays on the farm to disadvantaged children from all over the North West of England. I’d had thousands of pounds of donations and I was desperate not to let my sponsors and the charity down.
I had to find a way to at least get to the start line. We were going to South Africa no matter what as we had an amazing holiday planned for after the race but I was utterly desperate to give it a go.
I had to not only maintain cardiovascular fitness but also find a way of doing so without aggravating the IT band so I decided aqua jogging, wearing a flotation belt whilst jogging around Altrincham baths was the way forward. Not only did I look a complete tool but I felt one as well. However it was the only way forward and, actually, it was really hard work but incredibly dull and boring. I got lots of really weird looks from other pool users but when I explained to them what I was doing and what was at stake for CAFT they were very supportive. I recall that at least one of them actually sponsored me.
We flew out to South Africa a few days before race day to try to get acclimatised to the heat. I’d been running with multiple layers throughout the UK winter to try to mimic running when overheated but it’s seriously tough training for a race where the temperature is usually 28c and can get up to 33c, through our winter in freezing temperatures.
Attending the expo and picking up race numbers on the Thursday was a real high but utterly terrifying. International runners are incredibly well looked after at Comrades, we bring a huge amount of money into their economy, with special International areas at the expo and an international finishers tent at the finish with food and drinks.
On the Saturday before Comrades lots of Comrades participants take part in the North Beach parkrun in Durban but I decided not to. I really didn’t want to know if my IT bands were going to hold up the following day, let’s just see what happens during the race. What will be will be. North Beach parkrun has a massive turn out the day before Comrades with up to 2,500 runners taking part. I would eventually get to run it!
Bruce Fordyce has won Comrades a record 9 times, 8 of them consecutively. He also won the London to Brighton ultra-marathon three years in a row. He’s an absolute running legend and now the CEO of parkrun South Africa. Bruce also does tours of the course in the day leading up to Comrades. With the benefit of hindsight I think these tours are pretty much designed to scare the crap out of runners. My wife Tracey and I took a Bruce course tour and as we progressed along the route our jaws just continued to drop at the immense challenge that I’d decided to take on. There are hills and there are hills but this course was just brutal. Massive climbs over several miles and it was only ever flattish as the route ran through some towns along the way.
Now seems like a good time to tell you what Comrades is all about.
Comrades was established in 1921 to commemorate the fallen heroes of the First World War. It is the most iconic multi participator road ultra-marathon in the world.
The race runs in different directions in alternate years. One year it runs from Durban to Pietermaritzburg, an up year, with approx. 6500 feet of climbing and 4000 feet of descent. Alternate years it runs the opposite way. Many commentators believe that the down year is tougher than the up. It certainly trashes runner’s quad muscles.
The race distance is 89kms (56 miles). There is a 12 hour overall cut off limit with various cut off limits along the route as well. If you cross the finish line in 12.01 you don’t get a time or a medal. One year the entire South African Rugby back line blocked the finish line at exactly 12 hours. It’s an incredibly dramatic finish as the 12 hour deadline approaches.
The race runs through the valley of a thousand hills and it certainly feels like it. There are 5 hills along the route that are so brutal they even have their own names Cowies, Fields, Botha’s, Inchanga and Polly Shortts and all have legend attached to them. However, it’s the none named hills that are the backbone of the race. They are utterly relentless and go on forever. There really are very few flat bits on the route!
One particularly brutal section will forever stick in my memory banks and that’s on the motorway on the outskirts of Durban. I remember it vividly on 2016’s down run. You see a massive descent ahead of you of about ¾ of a mile but by then your legs are trashed and you can’t really take advantage of the down bit. Then you look further along and see that it’s a massive dip and goes all the way back up again. Just what you need after 75-80km!
There’s lots of history, tradition and folk lore around the race. At around the half way mark is Arthur’s Seat where the legendary Arthur Newton, 5 times Comrades winner, was said to stop and have a fag. Just what you do half way through an ultra. Now it’s said that if you put a flower on Arthurs Seat you’ll have a great 2nd half of the race.
If you run a consecutive up year/down year or down year/up year you get a special back to back medal. If you run 10 you get to keep your number and it becomes a green number. There are all sorts of different colour numbers that say whether you’re a newbie first timer, going for a back to back, yellow for 9 etc. and each athlete’s race number has the number of Comrades successes on it. One tip I learned was to stick with a yellow number as they’re pretty keen to complete the race, very experienced and desperate to get their green numbers.
As the race takes place in Kwazulu-Natal, the home of the Zulu’s, the Zulu national anthem, Shosholoza is sung at the start, followed by the South African national anthem and then Chariots of Fire. Then just before the start a recording of Max Trimborn doing a hearty rooster call. He used to do this as a competitor at the start of the race and it became part of Comrades tradition to play a recording just before the start.
Two significant landmarks are along the route. The wall of fame where someone who has completed Comrades can have a plaque with their name and number placed. The other landmark is the Ethenbemi School for the handicapped where the children line the road waiting for high 5’s. We visited the school during the Bruce Fordyce tour and took gifts/made donations. The kids are so enthusiastic but it’s a relatively flat part of the course and you can’t waste too much time here.
Finishers in different time groups get different coloured and named medals and I’d originally set my sights on a Bill Rowan medal for a sub 9 hour run but, having seen the course during the tour that was hastily changed to just finishing and getting any medal.
Race day arrives and a 5:30 start outside Durban City Hall. This means getting up at 3:00 for breakfast and then a 20 min walk to the start. Tracey leaves me and heads to the meet up point for her hospitality day touring the course with a free bar (shame she’s t-total) and luxury breakfast and lunch and hopefully getting to the end of the race to meet me in Pietermaritzburg.
2015 was an up year and it’s utterly brutal for the first 20 miles or so, all run on the motorway out of Durban.
I was totally terrified of the race by this time and really worried that the IT bands wouldn’t hold up. I’d bought some high end knee braces in the hope that they’d help.
The start was incredibly moving with all the anthems etc. but it was also very warm, well over 20c at 5:30 in the morning and that was also scaring me to death.
The start gun goes and we’re off. Strangely all the pre-race nerves dissipate as they always do once you start running. Now all I had to worry about was the IT bands holding up.
It soon became clear that this wasn’t to be the day. I was in agony after 10km but I hobbled on until about 17 miles, already a net elevation gain of 758 metres, nearly 2500 feet, where my Wife was having a luxury breakfast and I was forced to pull out in floods of tears and in a lot of pain. I became a spectator for the rest of the day and can only describe it as painfully emotional. My dream was over, I’d let down my sponsors and the charity and I just didn’t want to be there. I did manage to drink Tracey’s share of the free bar to drown my sorrows but the dream was over and I’d failed. I was totally and utterly devastated but I’d be back! That’s a story for another day though.
By the way, we had a fabulous holiday afterwards which was just what the Doctor ordered and enabled me to hatch my plans to come back and have a go at the 2016 down run. I was going to run Comrades even if it killed me!
It was Andy Dooley and my utter envy of his framed 5 star World Marathon Majors certificate and medals that started me out on the quest to run the 5 WMM but, before I ran Boston 2013, Tokyo had been added to the WMM to make it 6 races and not 5. This had three immediate impacts. It meant that I’d be gunning for the 6 star certificate by taking on Tokyo, that Andy would have to run it as well and that we’d both be thousands of pounds poorer in monetary terms but much richer in life experiences as a result.
But first I had the prospect of the New York marathon in November 2013 a race that would hugely enrich my life all because of a picnic in central park. Searching out groups of people to share the NYC marathon experience with I came across a Facebook group called New York Marathon 2013 that had been set up by an Australian lady, Briony Bullard. We became virtual friends all around the world and shared our training adventures for the months leading up to the race and decided that we should meet up for a picnic in Central Park on the Saturday before race day. Not sure of the numbers but certainly over 50 of us turned up on a gorgeous November afternoon (thank goodness it was cooler on race day) and International friendships were forged all over the world. We all remain in contact and have met up many times since. Too many to mention but a special thanks to my Australian friends Stephen Orr, Giovani Cirillo and Jane Baker who we met up with during our holiday trip to Australia in February 2020, had dinner/breakfast together, ran parkrun together and particular thanks to Gio for his amazing hospitality during that trip. Mention of this group wouldn’t be complete without talking about my amazing Belgian friend Pascale Billiau. She is one of the sweetest kindest ladies you could ever meet, and we have met several times since 2013. She, like many in the group, have been massively supportive of me since my cancer diagnosis in May 2017 and helped me through some dark times.
Back to the running now. NYC is a tough race to get into. The qualifying times are tough, currently sub 3:23 for a 56 year old male although I recall that they were even tougher back then and I couldn’t quite bag the QT. Then got a rejection in the ballot which left only one route open, buying a place with an International Tour Partner which made it very pricey. It’s expensive enough to get a standard entry, currently $358 dollars for non US residents!
Training went pretty well, I was in good shape and very fit. This trip only my Wife and I went and it was a quick in, get the job done and out again.
In my opinion NYC is one of the toughest marathons I’ve ever run. It takes in all the Boroughs of Manhattan with numerous massive bridges en route and they took their toll.
Early start to be bussed out to the race start on Staten Island. Lots of nervous hanging around in the starting area before your start wave is called forward and then you’re off.
The race starts with a massive climb over the Verrazano Straits Bridge which has two tiers with runners on both. One tip for any reader who intends to do NYC in the future. If you are on the lower tier don’t run on the outside edges as it could lead to an unpleasant shower from above as people decide to take a pee over the edge of the top tier!
The race itself went largely without incident. At mile 23/24 you run alongside Central Park and it’s a long steady, tiring climb before entering the park where the route could be politely described as undulating, Race Director speak for incredibly hilly. Always thought the RD’s massively underplayed the hilliness of their courses. Even the finish line was on the brow of a hill!
Given how tough this race was I was happy with a finish time of 3:27:06. As it was a chilly day it was also very nice to be given the rather fetching orange poncho. Walking back to our apartment it looked like a sea of orange zombies.
Next up in February 2014 was Tokyo. This would be the first of 3 marathons in 2014.
Another race entry via an International Tour Partner made it another expensive trip. The QT’s for Tokyo are at the elite level!
Tokyo was incredibly unique and everything that we expected of Japan. We had quite a large crew from my running club taking part and supporting. 5 members of the club ran the marathon and, to this date, we don’t know of any club that has 5 WMM six star medal holders.
We were actually very lucky to run the marathon as the previous few weeks had seen massive, unprecedented snowfall in Tokyo but, thankfully, this had largely gone in Tokyo. It did however mean that our trip to Mount Fuji was cancelled as it simply wasn’t accessible due to the snow.
Andy and his Partner Liz and my Wife and I turned the trip into a holiday spending a few days in Tokyo after the race and then a few days in Dubai on the way back. Charlie, Paula and Claire travelled just for the race and headed home on the Monday after race day.
A highlight was the International Friendship run on the Saturday which lots of us took part in and had great fun. We even managed to get Liz to do it and she hates running!
Everything went to plan on race day. The course passes many landmarks along the way but I’m totally rubbish at spotting any of them. Completely in the zone and focussed.
The route has a number of out and back sections that feel a real drag when you are on the way out and an even bigger drag on the way back when you know how far you’ve got to run to get back to where you started.
I crossed the line in 3:24:33 my 2nd fastest ever marathon and the fastest of the WMM.
The best story about the trip was on the Monday when Andy, Liz, Tracey and I did the tourist trail including a visit to the Sensoji Temple which Andy told me we had run past the previous day. Blinkered as usual I had barely noticed it! It’s hard to miss, it’s huge! We decided to try a bar and grab some food and it turned out that we chose one of Japan’s very famous bars, Kamiya Bar, famed worldwide for its Denki Bran liquor although we didn’t know about that we entered this famous emporium. The menu was all in Japanese but, thankfully for tourists, they had the most realistic plastic models of the food offering so it was reasonably easy to point out what you wanted, absolutely gorgeous tempura.
Andy and I were wearing our medals as you the day after a marathon and we sat next to a group of elderly Japanese gentlemen who were fascinated by the medals and we engaged in a dialogue with them despite them knowing no English and us no Japanese. Then one of them disappeared and the next thing we know three drinks appear in front of each of us that these lovely gents had bought us. A beer, a glass of water and a glass of the aforementioned Denki Bran. Typically British we started on the beer thinking of the Denki Bran as a chaser. This brought much derision from our Japanese friends and we got the message by sign language that you sip the Denki Bran then sup some beer. It actually made the beer taste really good. This put t-total Tracey in a difficult position so we had to surreptitiously make sure her drinks vanished. It was a real hardship!
Our friends had been taking photographs of us. One by one they left, wishing us well with much handshaking and bowing. About half an hour later one of them came back. He’d only been to a photographic shop, had the photo’s developed and brought prints back for us. We were really touched by this gesture which was so very sweet.
Only London was left now and April 2014 would see me complete the WMM and qualify for my 6 star certificate.
No problems getting into this one as I took our club place. QT’s were incredibly tough to get and I was just a few minutes too slow for the 3:20 required for a 57 year old.
London really is an amazing race as far as crowd support is concerned, something that I would really appreciate more when I ran it again in 2018 when my cancer treatment had really taken its toll. However, I found parts of the course massively uninspiring, particularly the interminable out and back section of the Highway and around Canary Wharf. Some parts of the route are of course completely iconic. Running past Cutty Sark, over Tower Bridge and the final few miles, especially the final mile and spine tingling finish on The Mall.
I made the mistake of going out way too quickly, easy to do as the first 10k has a good elevation drop and I knew I was going to pay for it. At the half way stage, on the Highway, I started seeing people collapsing, it was a warm day, and I got really concerned about having gone off too quickly so the 2nd half became all about just getting to the finish line.
Running past Buckingham Palace would have been incredibly inspiring if I’d actually noticed it! I was so focussed on getting onto The Mall and that long straight run in onto the finish line. By that stage you are conscious of the media coverage and you have to do the standard arms raised as you run in, just in case the TV cameras are on you.
I crossed the line with a decent time of 3:32:33 which, given that I’d run the 2nd half poorly, I was happy with. It gave me an average time for the WMM of 3:27, not too bad given that I was 54 at the start of the journey and 57 at the end.
Then one of the celebrations of all time followed. My Wife had had the WMM listed on the back of one of my club shirts and presented it to me which brought me to tears, the champagne flowed and it was great to celebrate with Andy given that it was his “fault” that I’d had the most memorable 3 years and shared it with great friends.
One big disappointment back then with London marathon was the bloody awful, one size fits all, baggy cotton t-shirts. Tracey could have worn it as a night dress! Seemed to fit Andy okay though!
Andy and Claire had had some catastrophes on their own WMM journey’s that I should share. Andy was due to run Boston in 2010 and fulfil one of his own greatest ambitions. He’d worked so hard to get that elusive Boston QT only to be foiled by the Icelandic volcano that stopped all air travel to USA.
Claire on the other hand had her WMM journey interrupted by Hurricane Sandy in 2012 that forced the NYC marathon to be cancelled shortly after she’d arrived in the City.
Everyone was gutted for both of them but delighted when they got there in the end.
2016 saw the launch of the WMM 6 star medal and the ability to claim the medal if you’d completed the 6 marathons since they’d become part of the WMM. We now, very proudly, have 5 WMM 6 star medallists at Styal RC and it’s a huge medal!
To close, what is the WMM all about? For the elite world runners it’s about prize money as the athletes who perform best over a two year period get to take the prize pool which is considerable. For other elite athletes they may be about chasing an Olympic QT. For the mere mortal decent standard club runners it’s about chasing a dream and it’s one that I’m very proud to have chased. It meant even more to me when I discovered in May 2017 that I’d probably had cancer growing inside me for the whole of my 10 year marathon journey. Just incredible to contemplate.
Next up will be a blog about my post WMM marathons including the one that I’m proudest of, London 2018.
Boston marathon is a truly iconic race. Established in 1897 so it’s one of the oldest road marathons in the world and every marathoner dreams of one day bagging a Boston QT and taking part in this amazing race. My lovely friend Claire had also managed a QT and was on the trail of the WMM as well so off we went to Boston with our other half’s Tracey and Richard. Tracey and I were staying on after the race and making a holiday out of the trip.
Boston is very special. A true runners race. Whilst London is a lot about charity and fun runners, Boston is about runners who’ve got that QT and are fulfilling their dream.
It’s also about the blue and gold colours and Claire and I couldn’t resist buying the race jacket. Problem is that hers still fits whilst mine is a “challenge”.
It’s a very early start to get out to the race start at Hopkinton on the US’s yellow school busses. This was going to end up the second scariest bus ride of all time but at the time I didn’t know about the Comrades bus ride! Those busses are very cramped. They’re meant for school children and there isn’t much leg room. Thankfully Claire and I are both short arses so we coped but we both went paler and paler as we travelled out to the start. It felt a very long way back to Boston 26.2 miles away!
The race went like a dream. It’s a very challenging undulating course with some killer hills including Heartbreak Hill, a brutal half mile climb at mile 20 before the descent into the City.
The last half mile or is well known as right onto Hereford, left onto Boylston and it’s on Boyslton where the finish lies, a long straight run in watching the finish clock tick away in the distance. With a few hundred yards to go I realised that if I put a last big effort in I might get sub 3:25 and so I pushed hard crossing the line with 1 second to spare and also bagging a Boston QT in the process. I’m very proud of that, only about 30% of the field bag a Boston QT whilst running Boston. The finish time was an average mile pace of 7:45 per mile and not too shabby on a tough course.
Claire followed in soon after. She’s a lovely elegant runner, great style, landing on her forefoot and making it look easy. She crossed the line in 3:34:52 and we found Tracey and Richard in the family reunion zone, quickly changed into warm gear and started walking back to the hotel and then all hell broke loose. We heard sirens all over the City but had no idea what was going on until we got back to the hotel and my mobile started going ballistic with text messages asking if we were okay. We received over 200 messages! Of course we had no idea why we were getting so many messages until we turned on the TV to hear the devastating news of the Boston bombings on the same Boylston that Claire and I had run along only an hour earlier.
The 4 of us were deeply shocked and upset as well as relieved that we’d got through the finish earlier than the bombs. In reality, if they’d set the bombs off in the family reunion zone it would have been utter carnage.
For once we’d completed a marathon but didn’t want to celebrate. We walked across the road to an Irish bar to get something to eat and it was incredibly, but not unsurprisingly, subdued. When the Mayor of Boston and the President of the USA came on the TV screens and told us to stay in our hotels as they couldn’t guarantee our safety our anxiety levels certainly ramped up. The next couple of days in the City was utterly terrifying with armed militia on every street corner and the drama of the chase to apprehend the perpetrators of this horrendous bombing unfolding on the TV. The airport was closed for a while but opened in time for Tracey and I to leave the City and head off for our holiday in the Florida Keys where we continued to watch the search for the bombers unfold. It’s definitely worth watching the film Patriots Day (ironically Boston always takes place on a Monday on patriots day) to understand the drama of the situation.
One thing that stuck in our minds was the amazing courage of the Boston marathon volunteers running into the bombing area to help people, all the time not knowing if more explosions would follow. So courageous. So fearless.
At the time I ran Boston I was Chairman of Altrincham and Sale Chamber of Commerce and involved, in a small way, with the unfolding rejuvenation of the town so I was quite well known in the local business community. When I woke up the day after the race I was asked by our local newspaper for an interview which I did on the phone sat on the hotel bed wearing just my knickers. Oh, I know, what a horrible image. Little was I to know that it would be plastered all over the front page of that weeks edition with the headline “Relief as Chairman of Altrincham and Sale Chamber of Commerce escapes Boston bombings”. I’ve never been shy of the press if I can use it for good but I really didn’t expect front page headlines. However, good did come out of it as I was raising funds for an amazing local children’s charity, The Children’s Adventure
Farm Trust and the article brought lots of donations in! It was also the first of lots of media coverage that would follow in my post cancer diagnosis life and lead to me winning a media whore award but that’s a different story for another day.
As I write I’m reminded that the Doctors think I’d had cancer for 10 years when I was diagnosed in May 2017 and I’d run 3 of the WMM in that timeframe. A classic reason why men need to get themselves tested. Even an ultra fit marathon runner can ultimately be diagnosed despite being completely free of symptoms for 10 years!
The final 3 WMM’s weren’t as dramatic but some funny things happened along the way and we made friends for life at a picnic in Central Park on a sultry Saturday in November 2013 and experienced some amazing examples of international friendship with one particularly amazing experience in Tokyo but I’ll save those stories for part 4 of my running life.
Every time I said “never again” I really meant it. The training took over your life and I was still co-owner and managing partner of a busy thriving Chartered Accountants practice and working long hours. Despite that I was also completely utterly driven to do my best at everything I took on in life. This probably came from my background of being a born and bred council estate lad, never wanting for anything but knowing how hard it was for my Mum to put food on the table. Living in debt, hiding from the rent collector and the tally man because there was no money to pay them. Yes, I was driven, driven by the desire to succeed in life and not to go back to where I came from. Don’t get me wrong, I’m very proud of my roots but the thought of living in debt, on the edge, was enough to drive me in business life to succeed and that was carried into my running life. I wanted to be the best I could so I trained hard whilst working hard and playing hard.
From my maiden marathon in 2007 I’d run one every year but now the ante was about to step up!
Chicago 2011 was next on the list and, totally unbeknown to me beforehand, my first World Marathon Major (WMM) and soon to become part of a major goal in my life to complete the set.
This time only Andy and I travelled with our other half’s. This was Andy’s final WMM and last ever marathon, or so he said at the time, but by then he was really struggling with his hip and had gotten through the training thanks to painkillers.
We had a great time in Chi town. It’s one of my favourite world Cities but, sods law, we got a really hot, still, day on race day. 25c at 7:30 in the morning rising to 30c by the end of the race is not the marathon runners idea of fun! Spent most of the race dodging from shade to shade making it a very long marathon, 26.64 miles according to my Garmin watch. Tried very hard to get under 3:30 but could see that target drifting away from me as the heat took its toll. Nasty little hill at the 26 mile mark but the 0.2 was a nice run into the finish in Grant Park and 3:30:52 in the bag.
Never ever ever has a cold beer been so welcome and when one of the Marshall’s offered me a pint my first question was “Is it proper beer?” In Europe it’s usually alcohol free but this really was full fat, ice cold beer with alcohol! 312 Wheat Ale and the first of many. I can honestly say that a beer never tasted so good.
Once Andy had finished and we’d met up you can imagine my joy in finding out that our race numbers had two beer tokens attached to them to be “spent” in the race village which we duly did.
Andy had accidentally double dosed his painkillers so was high as a kite. It was so funny watching someone who’d just run 26.2 miles bouncing through the fountain like Tigger. I so wish we had a video of that.
Thankfully our very sensible other half’s took over and made us drink water after we’d spent our beer tokens and this is the only photograph that you’ll ever see Andy and I drinking water in!
After the advisory water intake, Andy had heard that all the Irish bars in Chicago had offered a free pint to the first 50 marathon runners wearing their medals. Whether this was true or not is debatable but we were 6 pints in before we paid for a beer. We were very persuasive with the bar staff and the managers said “Oh give them a pint to shut them up”. Happy days.
I started part 1 by saying “It was all Andy’s fault” but it was actually Liz who was partly to blame. Unbeknown to Andy or I she’d heard about the WMM 5 star certificate that could be claimed when you’d completed all five (there were only 5 back then) and she bought it for Andy as a surprise and then they had it framed with his 5 WMM medals. When I saw the frame and certificate I was totally overcome with jealousy. Out and out coveting of my friends certificate and framed medals. The green devil of envy. I simply had to have that certificate and so I set myself the target of getting one.
Andy was in the first 20 Brits to get the 5 star certificate and in the spring of 2014 I became one of the first 30 Brits to achieve that goal but there are lots of stories in between. I think it’s not unfair to say that Andy and I became trend setters as far as bagging the WMM is concerned and inspired many others to achieve that target. They may be thankful for that inspiration but hate us for how much it has cost them chasing that WMM dream.
Next up was the matter of getting that difficult Boston QT (qualifying time). In the USA everybody dreams of bagging a Boston QT and entering this most iconic of races. For many it’s just a push too far but for most above average athletes it’s achievable. For my age group, 55-59, the QT was sub 3:40 and that was my goal when I ran the first Manchester Marathon, my home city marathon, when it re-started in 2012 after an absence of many years. It was a truly foul day. Many runners who picked up their race numbers the day before simply didn’t bother starting on the Sunday morning and approximately 1,000 dropped out on the day, many with hypothermia.
Thankfully I ran pretty well in 3:28:24 which was an amazing time in the circumstances and yaaaaay, I’d got my Boston QT for 2013.
It was a good job I had used the time before the organisers announced a few years later that the course was short, which was par for the course for the worst organised race that I’d ever taken part it. Thankfully they have improved massively and it’s now one of the best organised I’ve run, I ran the full Manchester marathon 3 more times as well as running it a couple of times as part of a relay team.
Before I could put the QT to use at Boston 2013 I had Berlin 2012 in my sights. Yes, 2 marathons in one year and I was still saying “never again” after each one.
I was 55 by this time but I’d never run better. Training for Berlin was the best I’ve ever trained. I ran some amazing times in races that year and felt very comfortable running long tempo runs at 7:00-7:30 per mile pace. So strong was the training that I really thought a sub 3:15 PB was on the cards. Then disaster struck, the runners curse, an injury. I ran a superb tempo training run, faster than target pace and after 7 miles with 1 mile to finish I decided to back right off and ease down over the last mile when my right hamstring decided to pull. Ironic that it went after I’d slowed down! It was like being shot in the back of the leg. So painful that I screamed in agony and hobbled ¾ mile back to base. This was just 17 days before race day! Spent the next two weeks cross training to maintain fitness as best I could and turned up on race day having no idea if the hamstring would hold up. During the race it kept tweaking repeatedly which forced me to ease up the pace but thankfully it held up for 26.2 miles and I crossed the line in 3:29:11 not too shabby in the circumstances but certainly the chances of a very good time, perhaps sub 3:15, shot up in flames.
On the Saturday before the marathon there is an International friendship run where everyone turns up in national costume and plods 5k to breakfast in the Olympic stadium. This really was great fun with our friends from Denmark turning up with their drinks trolley offering fellow runners Schnapps and beer for breakfast!
Then the drama unfolded. A few of Styal RC members were taking part and we all had a reasonable idea what times we were all likely to achieve. By the time Chas was an hour past his probable finish time we were all getting very worried. Louise headed off to try hospitals whilst we hung around for hours trying to get information before we headed back to the hotel only to find the bugger sat outside having a beer with Louise! We were very relieved that he was safe but could have killed him! Needless to say that was Chas’s last marathon. He’d been pulled off the course at 30k with dehydration and taken to hospital on a drip as a precaution. Well, we always thought he was a bit of a drip. Only joking Chas.
I was going to carry on and write about the Boston marathon in 2013 but that was such a special and incredibly tragic an event I’m going to do a seperate blog just on Boston to cover the bombings and the impact on the City and ourselves.
Part 3 to follow soon.
None of it was my fault! I blame it all on Rachael Charlton, Andy Dooley and a 71 year old lady I met on a walking holiday!
After life as an active sportsman playing table tennis to just below county standard and a fair bit of social squash why on earth did I get into running?
It all started with a medical when I was 45 (2002). Let’s just say that I’d got a little bit tubby. My kids used to call me Mr Blobby! I was sent for a medical by the firm that I managed and they told me I was borderline clinically obese, my blood pressure was sky high and that I’d be on drugs for the rest of my life if I didn’t do something to sort it (oh, the irony of it).
The gym where I played social squash had an informal running club and, in fear and trepidation, I joined them for a few runs. I was the only person who ever fell for the initiation ceremony when a guy called Chas told me “All new runners have to run up and down these 50+ vertical stairs twice”. Well I did and no one else has since and that started a friendship with Chas that survived then and still does today.
After a couple of years we decided that we should become a “proper” club and affiliate with England Athletics and so I was one of three main committee members when we founded Styal Running Club in 2006.
That’s when Rachael came out with the words that became a little bit immortal for me “Now that we are a proper running club we should all have a marathon on our CV”. I resisted valiantly for weeks on end. After all, I still thought 10k was too far!
In the end I caved in and about 7 of us entered the 2007 Amsterdam marathon in my 50th year. Strangely, one by one all the others dropped out leaving billy no mates to run the marathon on his own whilst they dropped down to the half. What made it even worse was that they got the same medals and tee shirts as I did for double their effort. Great joy walking around Amsterdam with them getting congratulations for their “marathon” efforts and me wandering along behind them very slowly, limping!
I can’t knock them too much though as they were very supportive and helped me with my training, running parts of my long runs with me and standing at the top of the steepest hill in my last 20 miler at mile 19 and shouting “Come on, put some effort in”.
I worked hard for 16 weeks, I really put the effort in and turned up in Amsterdam as fit as I’d ever been. The pounds had dropped off and I looked sleek, slim and fit.
Amsterdam is a lovely marathon starting and finishing in the Olympic stadium. It’s amazing running into the stadium underneath the Olympic rings after 26 miles but it’s also lovely running along the Amstel out in the Dutch countryside.
Running quite conservatively, because I was utterly terrified of the distance, I ran in at 3:37 and promptly said “never again”. I said “never again” another 18 times before I got to 60!
Then Andy joined Styal RC and that started the ball rolling on many more running adventures around the world.
Andy was a better runner than me but being the stubborn bugger that I am that was an incentive to improve! It took me years to better his half marathon PB. Most importantly we became great friends and have shared most of each others running highs and lows.
Andy really suffered with immense hip pain for a good number of years that we ran together before finally having one hip replaced and coming back after that to run more marathons before his 2nd hip needed doing. Amazingly he has come back from the 2nd new hip a bit like the bionic man and has run several more marathons and trained for an ultra (postponed due to Coronavirus). It was one of each others running highs when he finished his comeback marathon back where my marathon journey started, in Amsterdam, in 2019 when he was 62. He trained like a man possessed. Totally focussed and dedicated and he got the reward he deserved when he finished well inside 4 hours. It was incredibly emotional and his Wife, Liz, and I were in tears (I’m allowed, having no male hormone means I’m an honorary woman) of joy when he crossed the line.
Going back in time now, lots of my club mates saw my elation when I finished Amsterdam in 2007 and decided that they really “should have a marathon on their CV” and asked if we could train together for another one but I’d said “never again”. Yet again I caved in and agreed that we would train together.
Andy and I sold the Brussels marathon to the gang on the basis that Belgium must be flat because it’s next to Holland. We’ve never lived that down! It’s gone down in club folk lore!
A group of us trained together for Brussels 2008 and we trained hard, 5 or 6 times per week really racking up the miles.
Andy and I were pretty well matched at marathon distance so we decided to run with the 3:30 pacemakers.
It was a foul day. Wet, windy and cold. I don’t mind the wet and cold but I don’t like running in high winds.
Chas and Jonny also ran together, a good way behind Andy and I as usual.
Coming out of the City, just before an out and back section, we hit a significant and long climb and looked at each other and said “Oops, we’re in for it when Chas and Jon see that”. Unsurprisingly we got the dogs abuse as we passed them on the out and back section! The saving grace was that we had to go down that hill on the way back into the City and I was a strong downhill runner.
Andy and I stuck with the pacemakers pretty religiously until about 30k at which point I felt really strong and took off on the long downhill section back into the City. With a few kilometres to go the slower runners in the half marathon joined in the course from the left and it gave me an amazing boost to be going past so many of them after 35k or so and I ran strongly into the finish to bag a time of 3:23:53, a time that I wasn’t to beat in the following 18 marathons. Andy also got in under 3:30 so we were both very pleased until of course Chas and Jon finished and wanted to kill us for selling them a flat marathon. Thankfully they were too slow to catch us!
We then moved on to Frankfurt in 2009 although we very nearly didn’t. Sat at Manchester airport for our 9:30 flight the day before the marathon when we hear the announcement that the flight had been cancelled! WHAT? No Lufty you can’t do that to us. Then spent two hours on the phone to Lufty getting everyone re-routed via Heathrow arriving in Frankfurt at all sorts of ridiculous hours. Dreadful preparation for everyone and very stressful but thankfully we could collect race numbers on the morning of the race. Then followed the most dull boring marathon of all time. Andy and I ran together again but both had a rubbish day. It’s still the only time Andy beat me in a marathon. By 1 second on gun time as we both clocked identical chip times. If only I’d put a sprint in at the end. Oh well I’m glad he’s got bragging rights for this one as I now live my running life vicariously through his. We both clocked 3:30:07. Not too shabby for a bad day for two old blokes!
Next up was Budapest 2010. Never ever been so wet in my life! The race alternated between Buda and Pest and we spent most of it running along the Danube. But the heavens opened and we had to run through rivers running down the roads. Andy and I ran together again and I took off again at 30k and finished strongly in 3:26:29.
Another clubmate, Brian, had to dive behind a bridge when his gut got the better of him and the following day the Danube was a strange shade of orange/brown! Bri got ribbed mercilessly for his dump turning the Danube orange.
Chas finished but was in a bit of a state so his Wife and mine got him changed into warm clothes. It was horrible sight seeing him stood stark bollock naked whilst two women tended to him, one of which was my missus. I then spent half an hour walking him up and down, walking backwards, walking forwards, getting food into him and bringing him back to the land of the living. Oh the power of Mars bars post marathon.
Remarkably, the Doctors think I’d had Prostate cancer for 10 years when I was diagnosed meaning that I ran all these races with the cancer growing inside me not knowing what was to come.
That’s the end of part 1. In part 2 we’ll get into the World Marathon Majors and the Comrades ultra marathon which were to become my obsession until 2017 when I ran into cancer whilst training for my attempt to bag a Comrades back to back medal but more of that on another day.
I don’t want this to come across as a whinge and me sounding needy. There are people in far worse positions than I am, like John whose operation to remove a brain tumour has been cancelled and may become inoperable depending on when the NHS are able to reschedule the operation post Covid-19. Then there are men in our Prostate Cancer UK Facebook Support Group newly diagnosed but not able to have treatment because there are no intensive care beds available or chemo would be a huge risk. Then other friends, like Sue, on active chemotherapy with massively compromised immune systems who face huge threat from Covid-19.
When I was diagnosed with incurable prostate cancer in May 2017 and told that I may only have two years to live it was utterly devastating. It took months for my head to get into a place where I thought less about dying and more about living.
Everybody thinks of me as being strong but they don’t see the bad days, the break downs and the tears. Only one person sees that and gets me through the other side.
Even when things got onto a more even keel there were still lots of days when the dark dog visited and depression/anxiety would descend and even a total melt down in October 2018 that needed counselling and the amazing folk at The Neil Cliffe centre calming me down and bringing me back from what felt like the brink.
What I learned about myself was that I had lots to offer and that I could help save lives by raising awareness of Prostate Cancer and I threw myself into that doing talks every couple of weeks.
Immediately after I was diagnosed I knew that I had to get away from working and focus on living. My Grandson Ethan, then 4, who was the absolute apple of my eye became even more important to me and I reduced work hours in September 2017 so that I could pick him up from school and build memories with/for him. I’ve adored that special time.
Then along came Grandson number two, Finn, in June 2018 who I would start to look after on Fridays and build a bond with just like I had with Ethan. They are both very special to me.
5K Your Way, a cancer support group linked to parkrun encouraging those living with and beyond cancer to exercise and socialise afterwards over a coffee, came into my life in late 2018 and I launched Wilmslow parkrun 5KYW with my buddy Sara Harris in February 2019 and it also became a massively important part of my life. So much so that I jumped at the chance to become North West Champion for 5KYW.
Before my diagnosis I had never really “got” parkrun but that too became a massively important part of my life at Wilmslow parkrun, building friendships with some amazing people.
Then Covid-19 entered our lives and wreaked havoc for all of us.
From a totally selfish viewpoint I’ve found it really challenging. Everything that has got me through the last 3 years of horror of living with stage 4 cancer was wrenched from my grasp. Added to which, like everyone else, I now have to live with the threat of Covid-19 ending my life potentially even more prematurely than the cancer will.
Not seeing the boys has been terribly difficult. I so miss the hugs and cuddles and football/cricket matches. FaceTime is great but it’s not the same and Finn changes every day at this age.
I’ve spent three years mourning my pre cancer life and then everything that has got me through the three years is taken away and yes I’ve been to dark places a few times over recent days.
However, I’ve managed to stay afloat and come back to the light. This is a really really horrible blip in life but most of us will come out the other side and a new normal will return. I feel desperately sad for those that we have and will continue to lose to Covid-19 and their families and it makes me so angry when I see people completely flouting the social distancing rules and condemning more people to an early death.
This weekend, when the clocks change, Spring will spring and with it the hope of brighter better days and many more Springs. Unfortunately not everybody will see those Springs but we can do our best to make sure as many people do by doing what is asked of us by the Government and protecting our incredible and brave NHS workers. Please please please #StayAtHomeSaveLives
I was diagnosed with stage 4 prostate cancer, incurable and therefore effectively terminal unless there’s a life changing development, in May 2017.
I’ve written about all the bad bits of living with stage 4 but it’s important to avoid focussing on those as much as we can and to look at the positives.
A diagnosis such as the one I received made me completely reappraise my life. Was work really as important as it always had been? If I could reduce workloads what could I do with my time that would be better for my family, friends and other people?
I very quickly realised that spending more time with my then 4 year old Grandson was the most important thing and so I stopped working 3 afternoons per week so I could pick him up from school. I desperately wanted to build memories for him as I probably won’t see as much of his life as I expected too and we have an amazing relationship. That was one of the best decisions I’ve ever made! We dote on each other.
This wasn’t easy and it ultimately led to some tensions but it was something I had to do so I did!
When Grandson number 2 came along in 2018 I was already trying to exit from the business that I co-owned and I achieved that in March 2019. I pick No. 2 up from nursery on Wednesdays and babysit on Fridays.
I love this time with the boys. It’s so special to me.
When I sold my business interest and further reduced my working hours it also gave me more time to spend with my amazing wife getting out and about with our Dog. Again, important time for both of us to spend together.
The extra time on my hands meant I could also do more to help others which led to me meeting some amazing people and doing some amazing things.
The Maggie’s Centre in Manchester was a source of great comfort to my wife and I and visiting there resulted in me being asked to speak at one of their events about what Maggie’s meant to me. Little did I know that the event involved the marvellous and amazing Margo Cornish and meeting her would lead to all sorts of adventures and to meeting even more amazing people!
Margo collared me to be her wing man when she was looking for support for Maggie’s. You do their hearts she said and I’ll do their heads and we became a bit of a double act. I’d tell them my story and make them cry and she’d then say “give us yer money/support”.
Little did I know that Margo organised an annual fashion show. One year to raise money for The Teenage Cancer Trust and in alternate years for Maggie’s Manchester. She’s an amazing powerhouse of a lady. When she said “You’ll make a great model” I had no idea what she was on about but she meant it and I suddenly found myself doing 9 weeks of rehearsals at the Maggie’s Centre to be a Maggie’s Model in 2018, working with a group of people whose lives had been affected by cancer, as part of a catwalk team. Over 50 of us made up the numerous teams who would perform on the catwalk underneath Concorde at Manchester Aviation viewing park. Our team of course being the best, was asked to also perform at the Gala Ball in the evening (the other teams would of course not agree that we were the best but we were very privileged to perform at both events).
Margo also asked me to do a speech at the fashion show and the Gala Ball about what Maggie’s meant to us and also allowed me to use it as a platform to raise awareness of Prostate Cancer.
Being a model and doing speeches to over 1100 people was so far outside my comfort zone it was untrue but it ended up being one of the best days of mine and most of the models lives. We all made so many friends for life and were able to share our adversities and support each other as well as have a right laugh at rehearsals.
The fashion show was a real emotional roller coaster of a day. There were tears, tantrums, tiaras and amazing happy faces. Rick Astley performed live and then in the evening did a full band set which meant I got to meet him a few times and when I delivered my speeches he looked to be very affected and emotional but what a seriously wonderful man.
As I’ve said many of the models have remained friends and will be friends for life. We all keep in touch regularly and often bump into each other when we are at The Christie for treatment and pop over to Maggie’s for a chat and a cup of tea.
There are too many to mention but I must mention two very special people. Sue Nicklen who has stage 4 breast cancer and also did speeches at both events, telling her amazing story of resilience in extremely difficult circumstances. We helped each other cope with the pressure of doing the speeches and she is a truly lovely lady albeit very poorly. The other lady is Helen Bacon who shared my interest in exercise. A triathlete, keen parkrunner and someone who helped at RDA (Riding for the Disabled) Helen was asked to make a film about the benefits of exercise for MacMillan and she enlisted my help. The idea was to take someone from Couch to 5K over 3 months and complete the 5k at Stretford parkrun. Gemma Ellis, another Maggie’s model became our victim and the three of us had the most amazing time, over 4 months in the end, including a recorded television appearance and then a live appearance on the BBC red sofa. The film is fabulous! Sadly Helen passed away last week and will be so very badly missed by her family, friends and everyone that knew her.
Margo enlisted my help in doing prostate cancer awareness talks for the Manchester Airport fire crews and they went well and in turn led to me meeting another amazing person, Kevin Webber.
I needed to talk to another runner who was living with stage 4 prostate cancer and hear about the impact it was having on their running lives and contacted Prostate Cancer UK who put me in touch with Kev. Kev had been diagnosed terminal in his late 40’s but was still doing amazing things as both an ambassador for PCUK and an adventurer including running the marathon des Sables (a multi day trek across the Sahara). Kev was a great help in making me realise life wasn’t over and I could still do loads. He encouraged me to use my running to raise awareness and funds and to do some work with PCUK. As a result I did even more amazing things:-
Thanks Kev, see what you did?
Margo, being Margo decided that I should be the recipient of the Maggie’s media whore award! Thanks Margo, I think it was perfectly fair!
Not having to work as much freed me off to loads of other things such as being a model in a naked calendar, way outside my comfort zone but raised thousands for PCUK. I’ve spoken about Maggie’s at numerous fundraising events, always managing to raise awareness of prostate cancer.
There’s so much more but this is long enough already! I’ll never be thankful of having cancer but it has enabled me to do some amazing things that I would never have done otherwise. I think my story has two important messages:-
That’s all for now. Hope you enjoyed reading it if you got this far.
I make no apologies for my view that no man should be refused a PSA test if he’s in the high risk groups just because he’s asymptomatic.
They tell me I’d had the cancer for 10 years but I’d had no symptoms at all (80% of men with early diagnosis don’t have symptoms). Was I bitter? You bet I was. If I’d known about having a PSA test every year from age 50 and actually had one I would have been diagnosed much earlier and had curative treatment.
Instead here I am living with stage 4, effectively a terminal diagnosis.
The biggest shock was that 1 minute I was training to run a really tough ultra marathon and 36 hours after I was told that my runners “groin strain” was prostate cancer. Within 10 days of further tests it was confirmed and I was told I might only have two years to live. That was May 2017.
Life as we knew it ended. They call it the new normal but no aspect of my post diagnosis life is normal. They should call it the new abnormal.
I was told on the telephone at 8:00 in the evening as I was leaving running club. I had the worst 15 minutes of my life, driving home in tears and absolutely in pieces to break the news to my amazing wife (her part in the journey is so important, more later). That was the 2nd worst conversation of my life. The worst was still to come, telling the children, which we put off until we knew more and the tests were completed.
We had to get them round but couldn’t tell them why and they must have been terrified. I think that what they heard was way more horrendous than they might have anticipated. Lots of tears and family hugs followed.
31st May 2017 we met Onco for 1st time. It was the day we should have flown to South Africa for the ultra! We discussed treatment and it’s impact. Androgen Depravation therapy coupled with Abiraterone. Effectively I was going to be chemically castrated. Once you start on this treatment you wont get an erection again but it won’t matter because you’ll have no libido and, by the way, your penis will shrink!
Would I still be able to run? Yes but you’ll be a lot slower and find it a lot tougher. I am and it is!
The effect of hormone therapy set in gradually. It was like watching part of me, my masculinity, fade away. For a few months there were erections but then no more. As the treatment is until I die this was now my life, no longer a man!
Hot sweats, hot flushes, weight gain, loss of body hair were so tough to deal with but as an athlete the loss of muscle mass and bone density coupled with fatigue have been horrendous. The treatment has stolen my masculinity as well as my athleticism, I can’t do anything as well as I used to! Fatigue is so hard to explain. It’s more than tiredness. You want to flop in a corner. It often hits me when I am running and I know I just can’t go on. In the early days that meant walking back to base, in tears because cancer has robbed me of something else. Now I’ve learned to accept it as part of the new abnormal.
Cue visits to see a psychosexual therapist with my good lady to talk about how no testosterone leads to loss of drive but you still have desire and need to get your mind into that space. Daily pills may help so we give them a go and yes they help with the mechanics but not with the mind. They don’t return your stolen libido.
Cue more appointments and now we get a vacuum pump prescribed. Practice pumping up the penis for 10 mins per day for a month just to keep a blood flow going I’m told. Totally demeaning and when I was 60, pre diagnosis, something that I would never have thought would be part of my life. How could you anticipate that?
Penetrative sex now completely off the agenda as the mechanical erection simply isn’t enough to sustain proper sex. So we use our imagination. It’s better than nothing and we enjoy the intimacy but I mourn my lost manhood. I’m still only 62 and never in a million years did I see this in my life.
Then you have the mental anguish of living with stage 4. How long will the first line treatment hold the little bugger off. Will it be effective at all. How long will I live. Will I see my grandson become a teenager (unlikely but I’ll do my best). Number two grandson comes along. How much of his life will I share? Will I get to walk my Daughter down the aisle? Will I even meet her children?
Time passes and the black dog of despair does ease a little. It was a year before I was even remotely thinking straight but cancer was the first thing you thought about when you woke up, the last thing you thought about before going to sleep and was never far from your mind at any time, every day of the rest of your life!
There are still really bad days when the fatigue sets in and you go to the dark place. Tears always follow and the only person who ever sees that is my wonderful wife who picks up the pieces, puts me back together again and convinces me that it’s going to be all right, for now at least.
Then there are the really dark episodes when you lose the plot completely. One such nearly ending in a complete breakdown that was narrowly avoided by spending hours in tears with a case worker at the Neil Cliffe Centre and then several appointments with a therapist to get me back on track.
You also have to take stock and plan for the worst. Get your financial affairs in order, update the wills. In my case exit my business so I can get away from the stress, coping with cancer is hard enough without that. Selling my interests when the business was at a low value but I had to be away, I needed to live. Yes, cancer has a financial cost. How long will the money have to last? I’m no lower able to provide like I was, another aspect of my manhood taken away. How will Tracey survive/cope when I’m not here?
One of the hardest things is living with the bomb! You’ve got this thing inside you, the bomb. The fuse is lit but you have no idea how long the fuse is but you know, any minute, it’s going to explode. That destroys your mind!
Then we have the 3 monthly bloodsxiety. The next PSA blood test may be the one that says the treatment has stopped working and you know that the cancer has become castration resistant. Yes, that’s right, castration resistant. Has a ring to it doesn’t it? Mentally that feels like it’s the start of the beginning of the end. I’ve not got there yet but I’ve got friends who have run out of treatment options and now their only hope is drug trials. When will I be there? How will I cope? I hope I’m as strong as my friends who never cease to amaze me. They are an incredibly resilient lot.
Don’t forget that this shitty illness affects more than just the man. The impact on my wife and our relationship has been considerable. She has to cope with my mood swings, the times I’m down and depressed, when she has to see me cry whilst holding in her own emotions and be strong for me. She must think about me not being here and being on her own. Who helps her? How does she stay positive?
Even little things like travel insurance become an absolute pain. Our banks travel insurance will cover us for everything apart from anything related to the prostate cancer. 10 day trip to Europe, yes sir that will be £1262.50 to cover you! Thank goodness there are some sensible insurers out there but boy, you don’t need the stress of this on top of everything else! You then have to re-apply every year, no guarantee of continuing cover. If your health deteriorates during the year you have to tell insurers and they might decide that you are no longer covered so you weren’t really insured in the first place.
I know that, in the past, the PSA test has led to over diagnosis and over treatment. I know men have suffered erectile dysfunction and/or incontinence as a result of over treatment. But times have changed and diagnostic/treatment pathways have been developed that reduce risk of over diagnosis and over treatment.
One thing that is certain is that if you get diagnosed too late, when the cancer has escaped the prostate and you end up stage 4, then you start living my life! Do you really fancy that?
I’ve set up this blog to try to help other men not end up like me.
Running Into Cancer 