I'm a lucky man.
My GP had been prescribing - although I didn't realise it - PSA (Prostate Specific Antigen) tests for me, done in conjunction with blood tests for other stuff. In August 2023 she rang me and said "you'd better come in", which is not a phone call you ever want to receive. My previous PSA level (2021) was 4, it was now 22. She was reassuring that it didn't mean I had cancer, just that I should be checked.
The urologist saw me 10 days later for the dreaded creeping finger of indignity, which showed an enlarged, but not hardening, prostate. I don't know what chatup line he used when younger, but with me he led with "if you do nothing, end of life care in France is very good". Which was sobering, scary, and gave completely the wrong idea of how far the disease had spread. Susan and I felt shell shocked.
Three weeks later I had the biopsy (mine was through the rectum, 12 shots) all of which showed signs of cancer. It was undignified but not over painful, and for the next couple of weeks I was uncomfortable.
That was the cue for multiple trips through the atomic donut - I had 2 MRI scans and a scintigraphy scan. Luckily the cancer hadn't metastasised, because that's a word I struggle to say, and the one word I found truly scary to contemplate. My cancer was diagnosed as ISUP2, which was explained to us as concerning but not serious.
All this was happening while the house renovation was happening. I might have pushed myself too hard some days, but I felt I had to finish something. I was chided by the GP at this stage for wearing myself out, but that was the day I spent 19 hours working on the stone wall.
Then came the time to chose treatment. I'm lucky, my GP is very easy to talk to, and being in France also has time to talk. I have a friend who is a retired GP, and I know a number of people who had treatment. All were reassuring and outwardly not seriously concerned for me. It did feel, though, that the urologist left the decision to me with not quite enough information to feel my choice was properly informed.
The choices were between radiotherapy and having the prostate removed. I chose the radical prostatectomy, after the urologist told me that if radiotherapy didn't work the operation would be the only option and much more difficult. Once that decision was made I was scheduled for another MRI, this time a full body scan.
Then - at a conference between the urologist and the radiographer it was decided I then had to have a colonoscopy because one of the latest scan had picked up an "interesting" looking nodule on my bowel. The colonoscopy was done in a hospital in Tours under a general anaesthetic and came back clear.
The Operation was done on Wednesday 26 June this year in Tours. It was done by robot over four hours, and consists of five holes in the stomach - four small ones for the cameras (and to rearrange my internal organs) and a large one in my navel for the extraction. They took the prostate and a nodule from the urinary tract and left me with a catheter, and a drain for the wounds.
After the operation all was looking good, before I had a massive setback on the Thursday night. I had a migraine that meant all I could do for 24 hours was lie down and chew painkillers - in addition to the paracetamol and morphine drips. I didn't eat anything at all on Friday, which they understood whilst not being totally happy about. Then I fainted in the shower - completely out. I had someone in there with me so I didn't fall. I was better on Saturday, ate two half meals and sat up for a bit. Then I fainted in the shower again.
Then, on Monday, when they were supposed to be releasing me, I got them to help me to the bathroom, got them to pose me because I thought I wanted a to use the toilet, and the next thing I knew I was on the floor with them trying to lift me. That gave me a huge egg on the forehead, a black eye, and a bruise on the cheek. All that meant I had an extra 2 days in while they did tests.
I think a huge contributing factor was the lack of nutrition - the food was disgusting, grey, over salty, and unappealing. I didn't finish one single meal while in there, and many meals I couldn't face eating anything. Once Susan had bought in an industrial size bag of pear drops my stability improved rapidly and I was sent home with a catheter and a prescription for 28 days of daily visits from a nurse for anticoagulant injections.
Before I went into hospital I had told family and friends I had cancer, but not announced it publicly. For some reason, I found admitting to myself that I had cancer difficult, and telling someone else I had cancer really difficult, almost as if there was some shame in it. Once I was out of hospital I wrote on the blog and Facebook, and harassed my family and friends to get tested (most of them already do).
As soon as I arrived home my condition rapidly improved - good food, comfortable conditions, and keeping downstairs dry (the catheter leaked continually) put me in a much better state of body and mind. Susan cooked amazing meals at my whim - lots of curry, chilli, some fried chicken and - for my first meal at home - amazing over topped pizza.
The daily injections have now finished, as have the weekly blood tests. I'm not sure I exactly enjoyed the daily nurse visits, but it was painless and Hey!! I had a visitor.
I'm now in the nappy stage of recovery. Having a catheter for two weeks means the muscles get lazy, and anyway, the bladder drops into the void previously occupied by the prostate. I'm regaining control, but not as quickly as I'd hoped. It should be all good within three months - I hope so, because wearing a nappy feels slightly dehumanising, and carrying a nappy bag and having to be hyper aware of where the nearest toilet is really cramps your style.
My follow up with the surgeon is in 3 weeks - almost exactly a year after the original phone call from the GP. I don't yet know if I'm clear, but fingers are crossed.
Mentally I've sort of been in denial most of the time - I assumed the doctors all knew what they were doing, so I left it to them to do the thinking. At other times my life felt like a scene from Alien: I had a thing in my body that at any moment could break out and kill me. My job was to try not to catastrophise, stay healthy, and not let on that it's a bit bloody scary when you realise you're not immortal.
There is a way you can avoid this. If you're a bloke, get tested annually, and get the cancer treated before an operation becomes the best option. And if you know any blokes, suggest they do the same.
The comedian John Holmes has made an excellent, very informative, and quite rude BBC podcast. Give it a listen and pass it on. It may save someone's life.
6 comments:
France is very good with the PSA testing, for sure. And the home visits daily, for jabs and dressing changes, by nurses is very good too. Unfortunately, G's experience with a urologist was a long way from good. Not for the same problem as you, but it left a deep trauma and he won't go near any surgeon again right now, whatever a test might show!
So I feel very glad indeed that you had a successful (not nice of course) experience, and even more glad that you are getting better day by day. Not nice the fainting bit - always a weird experience.
Really felt for you about the food - I lost more than 5 kilos in 5 days of hospitalisation back in October! Getting back home is the only treatment required when you have a good cook in the vicinity, or a freezer full of meals you've prepared !
Anyway, so very happy to hear that you are feeling chipper and getting back to things progressively.
Well done for being so open and frank about your experiences. My friends and family probably think I'm a loop machine telling them to get a PSA test even if they don't have symptoms. Here in the UK you have to ask and sometimes insist, not very proactive. I thank my GP for their swift action prompted by me commenting i make frequent visits to the toilet, day and night. Investigations revealed very early stage cancer and so I'm on 'active surveillance'
and should die 'with prostate cancer rather than from it' which is reassuring.
glad you are doing better....my brother (69) went through the same a few months ago...he chose the surgery too and is back walking for over an hour every day....yes, men should still be tested despite the "you'll probably die with it" idea as some cancers are more aggressive
Well done for writing such a sensitive and frank post about it.
You two have been through the mill lately and it's good to hear that you are on the mend.
Two of my former colleagues died because they were never tested, ignoring symptoms, both tragedies that could have been avoided and deprived them of living to enjoy their retirement.
Your excellent post reminds us that it is up to us to look after ourselves, do as the doctor orders and make the right choices.
Hi Simon. I was alerted to your amazing blog by a mutual friend.
Well done mate for a truly inspiring shout out to all us blokes to get regular tests for prostate problems.
Let's hope your recovery time is short. Thinking of you. D.
Thanks for this post, Simon. I get the results of the PSA test every time I go to the lab for a blood test, and so far so good. Problem is, my médecin traitant isn't very good about giving me a prescription for the blood work and I'm not good about reminding him. I just saw him a few days ago, meant to ask for a prescription, and then forgot about it. I'll have to call him and ask him for one. Take care of yourself.
Post a Comment