I’ve just finished my 32 sessions of radiotherapy and I’m 6 months post surgery. Two good reasons to celebrate. Another is that I’ve reached a turning point and, instead of being engulfed in the “cancer moment“, I’m starting to look forward again.
The last 2 years have been eventful in one way or another. Biopsies (twice), septicaemia (3 times), collapsing and thinking that was my lot (just the once, thankfully), cancer diagnosis, surgery, several periods in hospital, radiotherapy. Each one felt like a life changing event on its own. You hear about these things happening to other people while you carry merrily on and then you find they happen to you.
When I was thrust into the hospital system everything was a whirlwind of confusion. Some of the confusion was due to the possibility I had cancer, but it was also down to a system that is geared up to deal with the conditions people have, but not with the people themselves. Everything was compounded by having ended up in a hospital which, at the time, was very badly managed and has since been slated by the Care Quality Commission. There were appointments, but never with the same doctor. There was the feeling (the realisation ?) I was not being taken seriously; I was being ignored. I was made to feel like I was a fraud in spite of being in pain. Even after collapsing I had to wait months before any further investigations were done. (Why?). I was swept along by events totally beyond my control, being bounced on the ground every so often before being carried along again. My confidence took a big knock when I discovered I was neither invulnerable nor immortal. It makes you realise how powerless you really are..
When I met the surgeon who did my second lot of biopsies and who later went on to carry out my robotic prostatectomy things stopped going downhill. Not quite a turning point, more a levelling off. Suddenly I was taken seriously and I started to feel like I was getting looked after. It’s a shame I hadn’t met him on my first hospital visit 18 months earlier. It later fell to him to tell me I had cancer but, between them, he and my Macmillan cancer nurses made things feel better. To be able to say that in the maelstrom of a cancer diagnosis only highlights how abysmal my treatment had been up to that point. I didn’t just feel it had been abysmal. It really was abysmal.
Although I had some post-operative problems the surgery definitely was a turning point, and this time in an upward direction, despite its life changing negative effects. The problems and the changes were difficult, they still are, but I’m now able to be more realistic and I can accept that life won’t ever be the same. Well, I don’t yet entirely accept it, but I’m heading in the right direction.
The radiotherapy that I’ve had to have following the surgery has not been as awful as I feared. The apprehension turned out to be worse than the reality. In an effort to reassure me I was told by my oncologist before it started that she had a good team. She wasn’t kidding. Sure, I’ve experienced further side effects, (which I was warned about and this time should be temporary), mainly fatigue resulting in my needing a sleep most afternoons, and others that are very sore, verging on pain. I thought the “burning willy” when I pee’ed was bad enough but that was soon surpassed by the “razor blades up the bum” that started soon after. I never thought I’d say this (what man would?), but give me burning willy any day!
Fortunately I was well looked after throughout the radiotherapy by all the radiographers and my oncologist. I honestly can’t praise all the people at both Reading and Bracknell enough. It’s not easy to combine professionalism with both humanity and humour, but they do. I’ve been asked every day how I am and I’ve been listened to. I’ve received support and I’ve been prescribed medication to relieve the side effects. I’m glad I didn’t hold back and suffer in silence when there was no need.
Now I’m in limbo. Not “bad limbo” where I’m worried sick because I’ve been left floundering with no help or information like before, but “good limbo” where, because I’ve been involved in my own treatment and informed and supported I have a very good idea of what’s going on, what is likely to happen and when. That positive difference has been made by all the people I’ve mentioned above, plus a few others like the ones in the Macmillan Health and Wellbeing Programme. These are the people who should be on the massive salaries, not the armies of managers and accountants shuffling their papers.
I have around 6 weeks between the radiotherapy ending and my next PSA blood test and then my appointment with the oncologist during which I can convalesce and recuperate from all that’s gone on. As far as I understand it, the next appointment is not going to be a defining moment where I’ll either be told “You’re Cured” or “Prepare To Meet Thy Doom“. Instead it’s likely to be the first of many check-ups that will continue for a long time in order to keep an eye on my PSA blood level. A series of rises, as opposed to a blip, could (would?) indicate the cancer is still present and more treatment is needed, but I’m hopeful that won’t be the case. As I said, I’m starting to look forward again and part of that is not to dwell on what might or might not happen. Instead I’m accentuating the positive, thinking about holidays and a return to work, intransigent 19th century employer attitude permitting, of course.
In the meantime I’m going to enjoy not having to get out every day for treatment and instead I hope to just laze around for a bit and build up my energy levels. I am so tired! I’m also really looking forward to being able to eat and drink normally again. I haven’t had an apple for two months! Nor baked beans, peanuts, fresh greens, all the lovely fresh seasonal soft fruits, chicken tikka masala and loads of other stuff I’ve not been allowed to have. One dietary change that might become permanent is my breakfast. I think my former morning favourite has been forever consigned to the bird feeder. King Muesli is dead. Long Live Waitrose Choco Pops. Boy, they’re addictive.