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!