Living with stage 4 prostate cancer, the bad bits!

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?