Four weeks ago I started taking Bicalutamide 150mg. They’re hormone therapy tablets whose function is to stop the testosterone that my body produces from attaching itself to the prostate cancer cells. Without the testosterone feeding it the cancer should shrink and stop growing as fast as it has been. As that happens the level of PSA (Prostate Specific Antigen) in my blood should go down and hopefully reach zero. So far, so good.
Unfortunately the effect is only temporary. The pills might work for a year or they might work for 5 years – there’s no way of knowing how each individual man will react. It’s a bit like when bacteria build up resistance to antibiotics and the antibiotics stop working. I’ll know when these pills have stopped working for me when my PSA level starts to go up again, always assuming it goes down first, which will mean the cancer’s started growing again.
When they do stop working that won’t be the end of it. There are several other different hormone therapy tablets to take and there are also hormone injections, a bit like trying out other antibiotics on an infection when the first one doesn’t work.
When they’ve all been tried, used and have stopped working I’ll go on to Chemo. I’m hoping that won’t be for several years yet and, by the time I get to that stage, that there will have been a few new therapies released that will stretch things out a little bit longer. With luck NICE will live up to its name, be nice, and allow the NHS to prescribe them instead of having to fight for the medications I need to stay alive.
I really feel for the men, and their families, who are currently having to fight to be allowed to have the medication that can slow down this disease and so extend their lives. I hear the arguments about how the amount of time gained doesn’t justify the cost and cannot help thinking how totally devoid of empathy and compassion those arguments are. I’m sure the people who think their cost-obsessed excuses have merit can never have been in the position of men like us. Oscar Wilde would have labelled them “cynics” because they all certainly know the price of everything and the value of nothing. It seems to me that as a Society we are far more willing to spend money on killing people in wars than we are to spend it on prolonging lives. That can only be because the “cynics” controlling the purse strings don’t understand that an extra day of life is priceless.
In suppressing my testosterone the Bicalutamide tablets can cause a long list of possible side effects with hot flushes being very common. I think I’m starting to have them. I say “think” because I’m not really sure what a hot flush is. If it’s waking up in the night, with legs that feel like lead weights, boiling hot and throwing the duvet off and having to get up and stand outside the back door in my birthday suit to get some cool night air, then I’m having hot flushes. Luckily for the neighbours where I stand is not overlooked because it’s not a pretty sight.
The other common side effects include enlarged boobs, but I’ve noticed no change yet. Then there’s erectile dysfunction, or ED for short. I’ve been there, done that and got the tee shirt ever since the surgery last year so I’m not sure the pills could make a difference.
I’ve noticed my facial hair growth has slowed down a bit and I’ve started to feel itchy in places and the skin on my hands is very dry, much dryer than usual for this time of year. I expect that in winter but it’s usually OK by now.
A few days ago for the first time I had something like the very start of a dizzy spell that didn’t actually develop into a dizzy spell. That’s the best I can describe it. It’s happened a few times since and only lasts a very short while. I’m aware of it but I’m not disorientated and I don’t feel like I’m off balance.
There’s another thing I’ve noticed and that’s sore nipples. To be honest I’m not sure if that’s been caused by the pills as it only happens sometimes and, so far, I’ve only felt it when I’m on the treadmill at the gym. It could just be my shirt rubbing. I should explain – I hadn’t been near a gym for 30 years until 6 weeks ago. My last foray into the world of Gym Bunnies all that time ago didn’t last long as places of exercise are not my natural environment. I was dreading going but thought I ought to make a supreme effort having been told there’s evidence that exercise can help slow down the cancer, as well as making me feel better in myself.
My plan was to go swimming two or three times a week (I’ve always liked swimming) and I’d show willing by going to the gym once or twice before giving up. Incredibly, amazingly, unbelievably I’ve found I like it. I look forward to going and have increased the gym visits to twice a week, each lasting about a couple of hours, plus two 1 hour sessions a week in the pool, where I’m now up to between 500 and 750 metres each time, depending on how knackered I am. It turns out the doctors haven’t been lying all these years, I really feel miles better and now look even more of a fraud as I’m the picture of health.
I think one reason I’ve enjoyed my gym visits is the place itself. It’s my local Council owned leisure centre, although it’s run by a private company. I didn’t know until I started there that I could get an NHS referral but was told cancer is one of the conditions that qualifies. Not only does that give me cheaper membership but it also means I got a full induction and have someone there once a week who goes through things with me and checks I’m not overdoing it.
There are no frills but the whole place has good facilities, the staff are friendly and so are the other people who go there. People actually talk. I have yet to see any posers and there are all ages and shapes and sizes and roughly an equal proportion of men and women. I’ve found on a few occasions that I’m one of the youngest in the place, although I suppose the time of day makes a difference because I go when the kids are at school and most of the adults are at work. All in all, the place is the total opposite of intimidating.
Getting back to the hormones, I originally thought I’d be on these pills or something similar for several years until the cancer got me or until a cure was found (ever the optimist!). However, there’s been a development. A few weeks ago my Macmillan nurse called to say my oncologist had gone over the PET scans with a colleague and overlaid them onto the radiotherapy that was done last year and now wanted to do a second lot of radiotherapy in almost the same area, which is not usual. She asked if I was up for it. “Yes!!” I said. “I’m up for anything”, what was there to think about? I was told I’ll have to have taken these pills for three months before the radiotherapy will start, which will be June, and then stay on them for a further two years after it ends. Once I’ve stopped taking them I’m guessing there’ll be six months to a year of regular PSA tests to see if it’s all worked. I’ll find that out at my next appointment.
When I was told a couple of months ago that I had about 7 years left, give or take, I decided I’d aim for 15 just to be bloody-minded.
With the prospect of a second lot of radiotherapy that might still result in a cure, plus the swimming and the gym, feeling good and a renewed optimism, I’ve now upped that to 30. I’m not daft, I know the odds and I know it’s one step at a time, but better to aim high than to give in.