Inside Health, Prostate Cancer

This radio programme from the BBC, called “Inside Health, Prostate Cancer” is worth a listen. Click on this link: http://www.bbc.co.uk/programmes/b086s7jr

I think it’ll be especially useful for anyone about to have any prostate investigations done or who is currently having them, but it’ll be informative to anyone with an interest in prostate cancer for any reason.

The programme was first broadcast on 4th January 2017 and should be available for a while.

If you’re outside the UK and BBC iPlayer won’t let you access the programme, try the Apple Podcasts app or one of the many other radio or podcast apps. 

Chemo pre-assessment

My chemo will take place in the same building where I had radiotherapy in 2014 and 2015 but there’s a marked difference between the radiotherapy and chemo departments if my pre-assessment a couple of days ago is anything to go by. Both are very modern and very clean but what I found different was the feeling of the place although, to be fair, I was there on one of the days that it is closed so maybe the atmosphere will be different when it’s got patients and staff in it.

The only person there was the Chemo Nurse who had phoned me a week earlier. We went through the paperwork together and I learned that in addition to Docetaxel I’d also be having two other drugs through an intravenous drip – Dexamethasone and Ondansetron, which I’d get first. At the end I’d get some saline, too. I also had the possible side effects that I might experience explained to me and was asked if I had any questions. It’s important to get one’s priorities right and the first question I had was whether or not I could go away on holiday to Spain for a week in September. The upshot is that it’s not the definite “no” I thought it was, but neither is it a “yes”. I’ll have to see how I do and then see what my oncologist advises. If I do manage to get away I mustn’t go into a swimming pool because of the chlorine and I’m only allowed into the sea up to my waist so as to avoid swallowing any sea water, which is not my preferred tipple in any case.

I was told a lot of things I expected to hear, but some of the “surprises” were that I should use a regular toothbrush with soft bristles instead of an electric one because, I think, the inside of my mouth will be more prone to sores, cuts and ulcers which could get infected, and to only use alcohol free mouthwash. As my immune system will be compromised I’m also not allowed what were described as “smelly cheeses”, so no Brie or Camembert for example, and meat and eggs have to be well cooked. Although salads are ok, they must be thoroughly washed. 

As I’ve mentioned in previous posts, I enjoy the foods that are described as “healthy”. I’m talking about low fat things, skimmed milk, soya, sugar-free and things like those. I’m told the general advice now is to do the opposite as I’m not to lose weight and I must eat things that’ll boost my energy. I’ve never found it difficult to put weight on and I’m worried that I’ll end up very overweight. 

One of the more definite side effects of the chemo is hair loss. It’s a dead cert, in fact. I haven’t yet got used to having lost most of my other hairy bits due to the radiotherapy and hormone therapy so the prospect of losing what’s left on my head and face is quite depressing – we’ve all got our weak points and that’s mine. My body is getting more like that of a woman’s with every hormone pill I take and it’s only the hairy bits that still make me feel like me, so being told about something called a cold cap that might prevent hair loss on my head that I could try if I wanted sounded a very attractive prospect, all things considered. It’s not guaranteed to work but I was going to give it a go. Except I can’t. The reason I can’t is that they don’t make cold caps big enough for my big head or, if they do, the chemo place doesn’t have any. So within 3 weeks I’ll probably be bald all over.  A mate suggested that I could put myself in control by shaving the lot off before it falls out, something that looks so easy when you see people shaving their heads to raise money for charities like Macmillan, but the thought of doing it for real does not feel so much like taking control as giving in, which I suppose I will have to do.

Other things I have to do is carry my Chemo Book around with me when I go out and have an overnight bag ready by the door in case I get an infection that is so bad that I have to go to hospital.

After going through the paperwork and questions the chemo nurse showed us around and then I had my bloods taken. The place isn’t big but has everything required. As the patient I’ll be given sandwiches because each session takes around 2½ hours, and both me and my partner will be given a cuppa, but there’s a small kitchen we can use if we want to bring food with us so he can eat, too. 

I know I’m not in a humorous situation, after all, cancer is no laughing matter but whenever possible I’ve used humour to help me get through the last few years. It’s not how everybody does it but we’re all different and that’s how I need to do it. I get my laughs where I can and, it seems, so do others because while writing this I found a site that gave me a few laughs and from which I pinched the idea for an image. 

Humour is what was missing from my chemo pre-assessment and I missed it. I had arrived on a high, having spent the previous four days in Dorset enjoying weather that was reminiscent of the Côte d’Azur and revisiting places that we hadn’t seen for over 25 years, such as Studland, Corfe Castle, Swanage and Weymouth and partaking of our favourite local delicacy, freshly caught crab sandwiches. Maybe chilling and de-stressing was not a good strategy, maybe I should have stayed home and dwelt on my situation instead, because the whole pre-chemo thing was far too matter of fact, realistic and clinical for me to handle and I came down from my high with a bump and left feeling like a black cloud had descended over me.

I’ll have my first cycle of chemo tomorrow. I hope it’s not all doom and gloom and that I’ll find the humorous side somewhere. 

Uncertainty 

A few things have happened since I last wrote. The best was 12 days in Spain lazing on a beach all day every day with warm evenings spent in a beautiful little town with friends we had met during previous visits. None of us knew we’d be there at the same time and seeing all of them really made the holiday extra special for us. In fact, it was one of the best holidays we’ve had and for 12 days the bloody cancer went to the very back of my mind. It was great. Then we came back. 

Two days after returning I had my blood test and two days after that I saw my oncologist. The holiday was definitely over when I learned my PSA had gone up again since the previous blood test three months earlier. Not so much this time, but enough to prove that the last increase was not a blip. My PSA now stands at 0.556 (post surgery, post radiotherapy, and with hormones). We chatted about my situation and it was confirmed that I’ll be starting chemo soon. I would be starting this week but I’m awaiting a camera up my tail end (a sigmoidoscopy) to see if I have a problem there after having endured four days of excruciating pain about a month ago. I could have had the sigmoidoscopy done earlier but I went to Spain instead, and I’m glad I did. The worst of the pain has gone now, thankfully, although things have definitely changed down that end from the way they were.

I was a bit worried that at my last appointment I might have persuaded my oncologist to go down the chemo route, so asked her if she really thought that was my best option. She replied that if I was coming to her now, all fresh, as a new patient, that she’d be putting me straight on to chemo. That answered my question and gave me food for thought. I was given some more of the same a couple of days later when I was speaking to my Macmillan nurse who said, (and I’m paraphrasing and taking it out of context here), that I have advanced prostate cancer. I stopped her to make sure I’d heard right and she seemed a bit concerned, asking “has no one ever said that to you before?”.

No one had, but I wasn’t surprised to hear it and I told her so. I suspected the cancer was advanced in much the same way that I was pretty sure I had it long before I was told. When I was given my initial diagnosis, despite already knowing in my head, I was shocked to hear the words uttered. This time, though, there was no shock whatsoever and there still isn’t. As I explained to my nurse, for me it helps to have it confirmed because I now know which information I should be focussing on when I need to read up on something.

Despite not feeling any sense of shock my general situation was already unsettling me and I suppose that didn’t help. Everything is up in the air. I don’t like uncertainty and there’s too much of it right now. Sometimes I feel down and on the verge of tears. I’m not sure if my increased emotional state has come about as a result of the hormone therapy or if I’d be feeling like this anyway. My day to day tiredness and the further problems in my bowels mean that any short term plans involving others have to be made with the proviso that I might not turn up and long term plans are well and truly on hold until after the chemo. I’m told that I shouldn’t dwell on things. For “things“, read “cancer“. That’s easy to do if you haven’t got it and all the crap that goes with it but not so easy when you have.

One regular event that I do have in my online diary, bowels and fatigue permitting, is the cancer choir I wrote about a couple of posts back. I went to the first one last week. Loads of people turned up, mostly women who outnumbered the men 2 to 1, but I was one of over a dozen men who had cast caution to the wind and decided that it didn’t really matter any more if we disgraced ourselves with our singing voices. It was brilliant. I thoroughly enjoyed myself and I’m going back this week.

The choir takes place in Chelsea not far from a place where I briefly worked 40 years ago, the famous Royal Marsden Hospital, a centre of cancer excellence and expertise. In fact, the research side of the cancer choir is connected to the Marsden. I’m proud to say I worked in the most important department in the hospital. Doctors and nurses looked up to us and were forever calling to ask us questions to which they had no answer. I am, of course, referring to the wages department. We were located just across the road from the main hospital in what had once been a well to do residential property. I made a detour to walk past it on my way home last week and saw that it had been returned to its previous residential grandeur. When I worked there all those years ago I was a rebellious teenager who thought he’d live forever. I lived for my weekends, had no fear and never thought I’d be in the same situation one day as the many patients I saw walking through the hospital doors. That was another life and it all seems such a long time ago now.

It’s hard to rock ‘n’ roll when you’re falling asleep all the time

The hormone pills I’ve been on for the last 7 months have now resulted in me feeling totally exhausted.  Over the last 5 or 6 weeks I cannot believe how much of an effort everything has become. There are some days when I don’t feel too bad but for most of the time it’s an effort to move.  I’ve been feeling a bit emotional, too, although I haven’t yet burst into tears. Both the exhaustion and the simmering emotional volcano are down to the lack of testosterone. The pills I take stop my body from producing it as the prostate cancer feeds off it in order to grow and spread. No testosterone = no spread, in the short to medium term anyway. No testosterone also means no energy, hot flushes and a short fuse (à la menopausal woman, so I’m told). At some point my body will realise what’s going on, then find a way round it. Not yet though as my latest PSA blood test shows a further drop to 0.222. Not quite the zero that I’d like, but at least it’s not going up. 

I’ll see the oncologist this week when I’m hoping she’ll take me off the testosterone-killing pills so that we can all see if my latest 15 sessions of radiotherapy that finished a couple of months back have done what we hoped, which is permanently got rid of the cancer in my pelvic lymph nodes before it’s had a chance set up camp anywhere else in my lymphatic system. If I come off the pills my energy levels should rise, my mood should improve and I should get my body hair back. It’s not that I’m completely smooth, but lots has dropped out and I’ve noticed I’m a little rounder in places where men aren’t usually and I don’t like it. I’m geared up for the possibility that I might have to stay on them for a while longer and reminding myself that I would much rather be emotional, hairless and rounder instead of dead helps me to keep some perspective.

Feeling exhausted and drained did not prevent me from going to Spain for two weeks (not Llandudno as some believed!). While the change of scenery and the sunshine and warmth were very enjoyable and welcome it was also the quietest, most sedate, most uneventful holiday we’ve ever had. Not by choice but it’s hard to rock ‘n’ roll when you’re falling asleep all the time. To paraphrase Churchill I slept on the beaches, I slept in the fields, I slept in the streets and in the hotel room as well. Not even a continual procession of eye candy parading by on the naturist beach could keep me awake for long. I’ve been home about 10 days now and still I’m knackered.

As if things were not bad enough, a month before we went on holiday I announced we were getting a new car. OK, not so much announced as wore my partner down until he gave in and agreed. Our existing car is fine but I cannot get in and out of it easily anymore because it’s too low. I have to perform contortions in order to do so and it’s been getting steadily more difficult for a couple of years. Our existing car is also 12 years old and we’ve owned it for 10 years. Plus we’ve never had a new, new car, only second-hand ones. These are just some of the arguments I used to obtain consent for my latest obsession. Had he not agreed we would now not be awaiting the imminent arrival of our new Volkswagen, so I can firmly pin the blame on him. After all, I’m ill and am not thinking straight so it’s gotta be his fault. Hasn’t it? At least it’s not a diesel VW or he’d really be getting an ear bashing.

Who would you wish razor blades up the bum on? 

The side effects from this year’s radiotherapy aren’t a patch on last year’s but it appears I spoke too soon at the end of my second week of daily sessions. Having tempted providence I was rewarded in the third and final week – punished might be more apt – by a considerably increased fatigue level and much more soreness when I pee. So far, though, the feeling of passing razor blades when I poo, which I experienced last year, has not happened. 

Although the 15 daily sessions of radiotherapy are over I was told the side effects can continue to increase for a couple of weeks before starting to diminish. Hopefully, they won’t extend to my bowels. Razor blades up the bum is not something I would wish on anyone, with 2 or 3 possible exceptions who immediately spring to mind!

Why the difference in the severity of side effects? Several reasons, I think. For a start the radiation this time was aimed at a slightly higher location on my body – the pelvic lymph nodes as opposed to the prostate bed (the area where my prostate used to be). Then there’s the fact that I started from a much stronger position this year. Last time was only six months after major surgery and my third bout of septicaemia and I was extremely weak even before the sessions began. This year I had recovered a lot. Even the hormone pills I’d been taking for the previous four months, and have remained on throughout, had not weakened me to anywhere near the same extent. Also, since February I’d been going swimming and to the gym a few times a week and generally being a lot more active, which I now have to get back to being. I was disappointed I’d not been able to fit swimming and the gym in for the last three weeks.

What happens next? We wait, that’s the gist of it. Wait to see what my next PSA blood test shows in early October and then wait to see what happens when I stop taking all medication. What we’re all looking for – me, my partner and my medical team – is a PSA level that’s around the zero mark and that stays there without hormone treatment or chemo. That would indicate the treatment has been successful and I’ve been cured or, at the very least, that I’m in remission.

The approach of the end of this latest treatment prompted me and my partner to chat about things the other day. Neither of us had imagined how our life would change when I first started feeling ill at the start of 2012. So many things have happened over the last three and a half years and not all of them medical ones. We got on to the subject of work, which we both reluctantly gave up albeit for different reasons, and agreed a million quid wouldn’t get us back now. Apart from a handful of occasions, we haven’t had to set the alarm to wake us up for ages. Take my word for it, it’s marvellous to never have to get up when you’d rather stay in bed.

Anyone who has had a planned lead up to retirement knows how much of an impact it has. It’s a much underestimated major life event where you lose a massive part of the social structure that you’ve built up over a lifetime. A structure that is made up partly of friends, work colleagues, a routine (even when you work shifts like I did) and just plain having to be somewhere at a given time. Most people moan about work whether they like their jobs or not. Where I worked moaning was in the job description (and with good reason in many instances) but most of us liked both what we did and most of the people we worked with. Imagine what it’s like when you don’t get a chance to plan and instead you’re unwillingly propelled towards giving it all up and almost overnight an entire way of life is taken away. 

Although there’s still much uncertainty at least we’re both now able to move on for a while. We can plan slightly ahead. We can think of using all the free time we have for things we want to do and, luckily, we can afford to do it, unlike so many people affected by cancer and other major illnesses, many of whom can barely afford to get to hospital appointments let alone consider leisure pursuits. 

Cancer is a horrible disease to put it mildly, including prostate cancer, which a couple of inept doctors I unfortunately got lumbered with in the early days were unknowledgeable enough to downplay, but it’s brought it home to me even more that there’s always someone worse off. Despite everything I still think I’m very lucky.
 



Radiotherapy 2015 – 10 down, 5 to go

This year’s zapping is surprisingly bearable. I had expected something similar to last year’s side effects, which came on fast, were quite hard going and got worse throughout the 32 sessions and carried on for months after.

Comparatively speaking, I’m getting off lightly this time with just slight irritation when I pee, a mild upset stomach and slightly increased fatigue on top of what I already have from the hormone tablets that I take, meaning I now have to sleep for a couple of hours every afternoon. The one alarm bell that started ringing on Day 10 was an increase in my peeing frequency, especially during the night, but if it gets no worse it’s nothing I can’t live with for a while. I’m hoping that my weekend break from treatment will calm things down before I go into the final week. 

I live about 30 miles from where the radiotherapy takes place and after two weeks the daily journey becomes a bit tedious. I suppose that contributes to the tiredness I feel, but at least the route we take is picturesque through stereotypical English country lanes in full leaf at the height of summer. We pass through a couple of little villages that could have been plucked out of a brochure from Visit England. From the first day I’ve tried to pretend I’m on holiday and am going out for the day every day, which has involved wearing gaudy clothes whenever possible – by “whenever possible” I really mean weather permitting. That has extended even to socks and underpants. They are revealed in all their “where’s-me-sunglasses” glory when I remove my hospital gown and lay on the slab. Well, if you’ve got it, flaunt it or, in my case, if you used to have it, flaunt it.

By this time next week the radiotherapy will be over but the daily pill taking remains. With luck all my cancer will have been fried sufficiently to kill it, there won’t be any more anywhere else that’s too small to see on a scan, and I’ll be cured. I won’t know if that’s the case for quite a while, maybe 18 months or two years until I do, but I’m optimistic. I wouldn’t be in this positive and hopeful position were it not for our fantastic NHS but particularly my current medical team, all of whom have gone all out to get me to where I am. Whatever happens (!) I will always be thankful for what they’ve done.

Until I find out one way or the other, life goes on and we’re planning to get away again before the end of the summer. I might not be allowed to sit in the sun but I sure can sit under a beach umbrella and enjoy watching everybody else strutting their stuff (I thought the hormone pills were supposed to stop lustful thoughts). If prostate cancer’s effects on sexual function have had one positive consequence, it’s that no matter what’s going on in my mind I no longer have any embarrassing man-moments on the naturist beach, so I suppose it’s not all bad.

Up in the air, or six foot under?

Déjà vu! I’ve just had my second radiotherapy planning session, the first one was last year.

Once again I was chauffeur driven by my partner to the Berkshire Cancer Centre in Reading. Despite being very familiar familiar with the route after so many journeys there, we had Google Maps at the ready just in case we both simultaneously had a senior moment and got lost. 

I was geared up for a 2pm appointment and I think I might even have been early (I always try to be, but rarely succeed) had there not been a message waiting for me on the answerphone when I woke up bleary eyed at the crack of half past nine, which asked me to come in as soon as I could for a kidney function blood test first. I don’t remember having a kidney function blood test as part of last year’s planning session but this year, unlike last, I was going to have contrast dye injected straight into a vein, via a cannula, during the planning CT Scan, so I think it was to see if my kidneys could handle it. As the dye goes in it makes you feel like you’re peeing yourself. I’ve had that sort of scan before but, if you haven’t, the first time can be unsettling as you get that warm feeling in your loins that conjures up childhood memories best forgotten. With my medical condition there’s always a chance I really could be peeing myself, so it was a relief when it was finished to find I wouldn’t need a change of clothes. Unlike so many men who have had their prostates removed I’ve been extremely lucky never to have suffered from incontinence and long may it continue.

As well as the kidney function test and the contrast dye another difference this time, a major difference for me, was that I didn’t need to follow a special diet before the planning session and neither will I have to during the radiotherapy itself. I asked why and was told it was because the radiation this time is mostly being aimed at a slightly different area of my body with only some overlap and, although I’m still likely to have bowel and waterworks problems while I’m having treatment, this time it’ll be a case of adjusting my diet as I go along. Maybe this summer will not be so devoid of all those fabulous fresh summer fruits and salads like last year’s was. I really missed those summer treats. As things don’t always go according to plan I’m going to pig out on strawberries for the next two weeks to make sure I don’t miss out again.

The other difference from last year was being told how many sessions of radiation I’d be having. I thought it’d be 32 sessions every day Monday to Friday like last time, or maybe even less. Not so. The plan this time is for 37. It’s only another week’s worth so I daresay I’ll get through it. I’ve looked at the calendar and, allowing for 3 weeks to get over the worst of the side effects, I might yet get a last week in Spain before the weather turns. That’s my aim, anyway, and it’s good to have something nice to aim for.

I didn’t need more tattoos done this time, either. I was almost disappointed that last year’s marks were still clear enough to be used again. My three little dots are the only tattoos I’ve ever had (or wanted) but three more would have trounced the competition at the support group.

The things that didn’t change were the water drinking, kissing goodbye to my dignity and the really good staff attitude. Water – I have to be well hydrated and have a full bladder for both the planning and the treatment, which means constant peeing, too. Sorry to keep on mentioning my waterworks, but it goes with the territory. Dignity – (wot dignity!?). Just like last year’s planning session I had to bare almost everything. It was almost like being back on the beach in Spain, except that there I went the whole hog. All that was needed to complete the scene was a beach seller passing through shouting “Agua, Cerveza“. Staff attitude – at the risk of sounding creepy the people who work in the place are so friendly, helpful and nice. I remembered two by name from before and asked after them. Coincidentally I bumped into one 10 minutes later and she remembered me, too. The other I asked about, though, had left to become a lecturer at a University. 

We got away about four hours after we arrived. The actual planning session only takes about 10 minutes, but the blood test and waiting for the result took up some time as did the pre-planning question and answer session and then the wait for my bladder to refill before the scan. The only thing that marred the day was the traffic in Reading when we started making our way home. (Reading, get your act together, please)

I’ve been asked how I feel about having more radiotherapy and everything that’s happening. Not sure, really. On the one hand I feel very lucky. Not to have cancer, of course, but lucky that I’m getting more treatment and something is still being done to try to cure me or, if not cure me, give me more time. I remember my mum saying to me when I was a little kid “life is sweet”. I never truly understood what she meant until I got ill. On the other hand, physically I’m mostly OK but I’m tired and have quite a few aches and pains, which I’d probably have had anyway at the age of 60 even without cancer. Mentally I have started to feel pretty emotional and down at times. My male pride (it’s still there somewhere) makes me blame the hormone pills I’m on for that but I suppose everything having been up in the air for the last 3 years must have taken its toll. Who wouldn’t be emotional after everything that’s happened? I haven’t wrung anyone’s neck yet but my fuse is becoming ever shorter. Again I blame the hormone pills but maybe it’s stress. I wonder if this latest treatment will work and hope that it will, but who really knows? My view on it is that I’ll try anything, bar the crackpot stuff you read on the Internet. One thing I know for sure is that I’d rather be all up in the air for the next 20 or 30 years than six foot under the ground. 

From a million dollars to sack of shite in 5 minutes

Things were going pretty well until about 3 weeks ago. I felt the best I’d felt in several years. My energy levels were well up and I was feeling positive (as positive as you can when you’ve got cancer). 

We’d gone to the coast for the day and weren’t overdoing it when suddenly, in the space of 5 minutes, I felt as rough as old boots and needed to sit down. We didn’t get home for a few hours after and when we did I collapsed into bed. Within a day the fatigue had well and truly set in. Foolishly I went swimming, as I had for the previous couple of months in an effort to get through it, thinking a bit of exercise might liven me up. Boy, was I wrong. It almost finished me off. By that evening my neck and top of my back had seized up and the runs had started – they lasted for a week before easing. 

Eventually I went and saw the GP, who wasn’t sure what had caused the sudden and prolonged change from feeling like a million dollars to feeling like a sack of shite. He thought that it could have been a bug but that I’d been affected worse because of scarring left in my bowels from last year’s radiotherapy. I wondered if the hormone pills I’d been on for 2 months might also have played a part, but who knows?

A couple of days after seeing the GP my hands started cracking up, a bit like the chapped hands that I get in the winter but much worse, with fissures in several of my fingertips just for good measure. They’re only now starting to close up after a week of pain and discomfort. You really find out how many nerve endings there are in your fingertips when they’ve got bloody great cuts in them.

I’ve started to get some energy back now after 3 weeks and have been back to the gym twice and swimming once but I’m only managing about a third of what I’d worked myself up to previously and even that knocks me out. Fifteen minutes on the treadmill is really hard going. I’m trying to get through it so I do 10 minutes on a couple of the other bits of equipment, too, before having to go home. It’s not easy. In my head it’s a battle between me and the cancer and telling myself it’s me who’s going to win but sometimes I’m not so sure. I’m determined to get through this latest downturn but, of course, that depends on whatever “this” is being just a blip and not the state of things to come. Surely I’m not that decrepit yet? Cancer is a bummer.

The joys of cancer (continued)

This is going to be a very short blog post.  I know it’s General Election Day and people have got other things to do, like vote and hope the mob they like best gets in and that reading a blog post isn’t their first priority, but for me today was also Renew Your Annual Travel Insurance Day and I feel like I’ve just been mugged.

We’re grabbing a week in Spain before the next lot of radiotherapy starts so we really need insurance. We haven’t had a proper break since September 2013 and, strictly speaking, that was not a break unless you count collapsing in a restaurant on the second night and then spending 12 days in a Spanish hospital as a holiday (I don’t). 

We already pay £10 a month for a packaged bank account that includes travel insurance. I just went through the insurance company’s medical screening and ended up being charged an extra £168 for the coming year. For chrissake! 

The moral: don’t get cancer if you want to be able to afford to go on holiday.

I reckon that if Macmillan Cancer Support’s estimates are right, and by 2020 one in every two people in the UK will get cancer in their lifetime, that the insurance companies are on to a nice little earner. And we’re all in for a massive rip-off. 

Hot flush guy on hormones aims high

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.