Twenty weeks post-Chemo 

I saw my oncologist today and at the risk of tempting fate I’m pleased to report I’m doing fine. My latest PSA result has shown a small but welcome drop, taking me to yet another record low. Three months ago it was 0.049, today it’s 0.044. The 5 months of chemo that I finished back in November hit me hard but, as the drop in my PSA shows, it hit the cancer even harder although not enough to deliver it a death blow, meaning the bugger will be back eventually.

I have a few lingering chemo side effects which, although not major, are uncomfortable and annoying. There are a couple of intimate ones that involve fluid and swelling and make me look very well endowed on occasions (even more than usual!). I also have blocked eye ducts that stop my eyes from draining so, instead, they water a lot but despite watering they still feel like there are lumps of coal in them. Going to the gym has helped me regain a lot of my strength and stamina, but I still get drained very easily and it takes a few days to recover from a night out.

On the plus side the fluid retention that had puffed up my face and the rest of my body has now mostly gone. I didn’t realise quite how much chemo had changed my appearance until my partner and my Macmillan nurse mentioned it just a couple of weeks ago. It turns out they both hadn’t recognised me on some occasions but didn’t like to say at the time. 

So, for now, I just carry on taking the tablets and getting on with life. My next blood test is in 3 months.

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Good news 

I had my first post-chemo blood test yesterday and got the results today. They’re good, excellent in fact, with my PSA now at less than one tenth of what it was six months ago. It now stands at 0.049, yet another record low. I’ve got used to walking out of the hospital feeling quite anxious and down but today was very different, I left on a real high.

I don’t know how long my low level of PSA will last and as great as it feels I don’t want to tempt providence. I’ve had my hopes dashed too many times since I was diagnosed just over three years ago to pretend that this welcome situation is permanent. It might be but it might not and, disappointingly, there’s more chance that the PSA will eventually start to rise again at some point. It could go down, too, and might even reach that elusive 0.003 or less that was supposed to have happened after the surgery. That would be marvellous!

For now I’ll be resuming my life and, as the oncologist said, start living with the cancer instead of dying from it. As a start I’ll be dragging myself back to the gym on Friday, the first step in an effort to lose that 20 kilos I mentioned in my last post and all part of my pre-holiday preparations. It’ll soon be summer (not soon enough!) and I need to look gorgeous for the beach, a long shot but you never know. España watch out.

Bottoms up

As I’m writing this I’m sitting in a recliner having my last chemo drip into my veins. There really should be someone here doing a drum roll at this point and I don’t understand why the NHS can’t employ someone to do that, although I can imagine the headlines in the Daily Hate Mail if they did (does that rag ever say anything positive about our NHS?).

Originally there was talk of me having either six or ten cycles of chemo. I’m relieved it’s stopped at six because it’s a bugger and messes with your body and your head in lots of unwanted ways but I’d be a lot worse off without it and would have had ten if that’s what I’d needed. It’s done me a lot of good and has brought my PSA level right down (which as of yesterday was 0.096, another record low!) and I feel extremely lucky to have had it, which might seem a weird thing to say but there are places in the world where not everyone with cancer has access to the treatments they need.

I cannot yet truly say “I’ve finished chemo” because there are all the other things that go with it, not least having to continue to take various extra pills for a while and having a very weakened immune system, but now I can look forward to moving on and getting my life back. I’ve had a brief taster of near normality during the extra week I’ve had between the last cycle and this one (see previous post) when my body had a bit more time to recover and I’ve been reminded what it’s like to have some energy, which has been most welcome, as has food tasting like food, tea tasting like tea and coffee like coffee, instead of all tasting like cow dung. 

Since starting chemo my physical appearance has changed even more from all the steroids and other drugs that have been pumped into me. I’d really like to look like a bloke again although the hormone therapy that I’m staying on will ruin my plans for the return of a hairy chest, but I’m hopeful my facial hair follicles will spring back into action within a couple of months and, if they do, I promise I’m never ever going to moan about shaving again. Well, not straightaway. I’m also optimistically anticipating a full head of thick, dark, lustrous hair, but I’ll settle for the stuff I had before if that’s all I can get. Beggars can’t be choosers. 

It’s not just my hair, or lack of it, that has been a visible change, my face is now rounder than it’s been since I was a chubby rosy-red cheeked 6 year old and the rest of me is a lot rounder, too. I feel like I’ve ballooned so the plan is to start getting myself back into shape, but I’ll get Christmas out of the way first. After all, it’s important to get your priorities right and I figure booze and Belgian chocolates should get a look in before the gym does. Bottoms up.

The cancer course

Spoiler Alert – this one is a bit heavy …… 

Amongst every other bodily function chemo also mucks up your sleep pattern, it does mine anyway. I woke up at 5am today and, being the beginning of October, it was still dark. Strange thoughts were going through my head, not racing as I was still half asleep – not asleep enough to actually get back to the land of nod and not awake enough to crawl out to make some tea. 

I haven’t been frightened of the dark since I was a young kid, in fact I need a pitch black room in order to drop off, but laying there I felt scared. I thought about dying and the lead up to dying and how and where it might happen, as it surely will sooner rather than later. I thought how I really didn’t want to die in hospital because it’s so bloody noisy and none of the wards I’ve been in during the last four years strike me as conducive to a peaceful and dignified passing, either for me or for anyone who is there at the time, not that I’m expecting a crowd. I also decided that as much as I like our home I didn’t really want to die here either. I didn’t want my partner to have those bad memories when we’ve been so happy here, it just wouldn’t be fair on him, although he disagrees. So I figured that left me with a hospice, if I get the choice I mean, because none of us know when we will go and maybe, when the time comes I’ll feel differently. But a hospice seems so final, a major acceptance of my fate, something that I’ve put off admitting to myself and, whenever the thoughts have tried to come to the fore, I’ve dismissed them or, more accurately, I’ve pushed them away as quickly and with as much mental force as I could muster. However, laying there in bed in the darkness of the early October morning I allowed those thoughts to flow. I’m no less scared having done so but maybe a little further along. 

I think the catalyst for all this deep thinking was my oncologist appointment a couple of days ago when we spoke about future treatments after the chemo has finished as opposed to not needing any more treatment. I already knew chemo was not a cure in my case but talking openly in those terms has helped me. As I’ve always said, I’d rather know what’s going on and that is still the case. 

Once again that led me to thinking how this last four years (almost 5 now) has been like a training course in many ways, the cancer course is how I’m thinking of it, which I like better than “battle” or “struggle” or “fight”, all terms that imply to me that when I peg out it would be because I hadn’t battled, struggled or fought hard enough. 

I find there’s at least one more bit of learning every day but, unlike other courses I’ve done over the years, I’m not sure what counts as a “pass” in this one. Is getting totally cured the equivalent of an A+ or is it flunking out as a failure? If it’s the latter, does that make the final module, Death, an A+? If so, I’ll try to put off finishing the course and collecting my certificate for as long as possible. 

Meanwhile the dark thoughts are still there and if anything are more to the fore, and yet I feel a little more accepting, but no less scared, having let them flow. Is that another module of the cancer course completed? 

I should add, Im not expecting to go any time soon!! 

Chemo – my 2nd cycle

I’m having my 3rd lot of chemo tomorrow.

This second chemo cycle that’s just finishing has been pretty much like the first, except the pain wasn’t as intense in the first 10 or 11 days this time and I’ve been able to either stick to low dose painkillers or not take any at all a lot of the time, although not all the time. What was different about the pain was that it persisted at a very low level right up to a couple of days ago, like a nagging all over toothache that just wouldn’t go away.

I didn’t get the hoarseness and the hiccups this time but I did get the oral thrush and the loss of taste or, rather, the acquisition of a foul taste all the time that made most foods taste like I imagine how cow dung would be. Once again, I feel the need to emphasise that I have never (knowingly) eaten cow dung. As before, vanilla ice cream was one of the very few things that tasted good but I’ve found you really can have too much of a good thing. Who’d have thought I’d ever have turned down ice cream?

I explained to a friend who just had surgery that it’s the solemn duty of anyone in a hospital bed to constantly discuss their bowel habits. The same applies to anyone on chemo and, for that matter, every other sort of cancer treatment because they all either bung you up or give you the trots or make you alternate between the two extremes. At least, they did with me. So, in order not to let the side down, I can report constipation started very quickly after my second chemo treatment despite having started taking Movicol the day before to try to pre-empt the inevitable. This time everything felt more compacted and persisted longer than during the first cycle. It took 8 days before there was any significant movement and I was able to leave off the Movicol and go back to white bread and low fibre cereal and what a relief it was, too.

Like my facial hair the hair on my head has virtually stopped growing, but not quite. I have some bum fluff type stuff on my face that grows so slowly I can get away without shaving for around 2 weeks and I still have a thin covering of hair over most of my head, although it looks to me to be patchy in places and I wonder why I’m holding on to it.

With so many meds swirling around my system I’ve been having mood swings. Things settle down as the cycle goes on but it doesn’t take much to make me the opposite of whatever I happen to be feeling at any given time. Whereas normally I’d just put up with things that annoy me or I think are daft, now I think “sod it, why should I“, and say what I’m thinking. I try not to, but the words are out before I can stop myself and I find I’ve upset somebody. Chemo seems to have made me very stroppy, or should that be “more stroppy“?

A few days after my last treatment I found out why you really shouldn’t try to cook something you haven’t made for years when you have chemo brain. I looked for something on the Web that I thought I’d be able to taste and would be nutritious and found a recipe for kedgeree, but I was so totally disorganised that I didn’t know what I was doing, made loads more than I’d intended and then couldn’t eat it because it tasted just like everything else – the aforementioned cow dung. My partner assured me it was nice but with my snappy mood swings he was probably too scared to say anything else.

During the first half of both cycles I’ve found it difficult to concentrate, to think and to remember words. Things get progressively better during the second half, but I’m aware I’m not as on the ball as I usually am. I’m also not as physically able as before and I get tired easily.

Six days after my last treatment I went to the weekly Cancer Choir Research group that I’ve been part of for the last couple of months. The choir itself is enjoyable, maybe in part because I’m right out of my comfort zone and am learning something new, but the journey there and back is a pain and tiring even when things go smoothly. On that day things did not go smoothly. The trains were disrupted on the way home and it was a hot and humid evening. I was in a very crowded Marylebone Station and for the first time I had to ask for assistance. I was helped into an office that was air conditioned and given a bottle of water, but later declined the lift on the disabled buggy to me take up the platform. For me that would have been too much of an admission that things have changed. I just hope they haven’t changed permanently. At least, not yet.

I currently get my blood tested every 3 weeks as part of the chemo and last time the PSA had gone up, but when I saw my oncologist today I found out that the tests done 2 days ago showed my PSA has gone down a bit this time, which was great to hear and made the cow dung I’ve been enduring all worth it.

Too much change too quickly

I’m at Day 18 and coming to the end of my first 3 weekly (21 day) chemo cycle. From about Day 10 onwards I noticed a slight improvement physically that became very noticeable by about Day 12. From then on things got better every day, physically at least, but around Day 15 I started to feel very angry and down as though a black cloud had descended and knew I was withdrawing into myself but just couldn’t shake off the feeling. It lasted a couple of days. I don’t quite know what I was angry at nor why I was feeling so down. There could be a few things that caused it, possibly a deepening understanding of my situation or maybe the various drugs swirling through my bloodstream, I don’t know. It’s not something that I ever experienced pre-cancer but who’s to say it wouldn’t have happened anyway? My Macmillan nurse reckons I’m having trouble letting go of the old me, and maybe she’s right, after all it wasn’t that long ago that I was the old me. Change is all well and good, that’s what life is, but some change happens too fast to be easily absorbed so there’s bound to be some turbulence.

My latest change is the promised hair loss, although I think “threatened” would be more apt. I’m not yet totally bald on my head but whether washing my hair, gently drying it or having a bit of a scratch the stuff just comes out. If it carries on like it is, I reckon it’ll all be gone within a few days. If it’s not, then the second lot of chemo later this week should finish it off. Like I’ve said before, going bald over a period of years is something you can get used to but losing your hair in a few weeks takes a lot of getting used to. 

With all these changes there’s a danger that life can become unmanageable and for some people that’s exactly what happens. I reckon I’ve got no choice but to manage, to cope, to adapt, and that brings us back to the inevitable turbulence. Too much change too quickly is not easy so I’ve had to try to find coping mechanisms. One that helps me is to write about all the crap that’s happening, hence this blog. I’ve done a lot of writing in the last three weeks but my preferred coping mechanism is laying on a beach and I haven’t yet entirely given up on that idea for this summer, although I’ve got to be careful of infections due to my immune system not functioning. I called my travel insurance company yesterday to see what I was still covered for. To my amazement they said everything, despite the chemo. It really would be a shame to waste it!!

Chemo side effects lottery

Four years ago, back in 2012, it was brought home to me just how important it is to know what medical procedures really entail and what the possible risks are. I’d foolishly thought the warning at the end of the TRUS Biopsy consent form that I was about to sign was just a standard thing that had to be there so I didn’t pay it much attention, but I found out different when infection from the biopsies led to my first bout of sepsis. Ever since I’ve made a point of reading up and asking questions whenever I’m about to have something done to me and, generally, I take medical matters much more seriously.

So by the time I started my first cycle of chemo a couple of weeks ago I thought I was prepared, but I wasn’t. The speed with which the side effects started and their intensity were a complete surprise to me. I’d expected a slow onset followed by a gradual build up whereas the reality was the exact opposite. 

From the little bit of personal knowledge of chemo that I’ve now got, and bearing in mind that we’re all different and I’m only an expert on me, it seems that the whole chemo side effect thing is even more of a lottery than those side effects that happen due to surgery, radiotherapy and hormone therapy, all of which I have first hand knowledge. There are lots of possible chemo side effects, the list is extensive, looks scary and can vary depending which chemo drug you’re on. Each one is like a number on a Lotto Lucky Dip ticket in that you know what they could be because you’ve seen the list, but you only find out what ones you’ve actually got after you’ve parted with your money or, in this case, had the chemo put into your body.

My side effects included hoarseness, hiccups, extreme change in taste, sore mouth, muddy feeling mouth, blood at the start of every pee, constipation, diarrhoea, sore skin, fatigue, feeling weak, a sickly feeling in the mornings, very weird dreams and, the worst of all, severe pain in every bone, joint and muscle. Some side effects, like the blood in the urine, only lasted for a few days, while others have come, gone, then come back again. 

Certain side effects happen to everyone, although to different degrees, so can be planned for and prevented. Sickness falls into that category and I was given steroids to deal with that, starting with intravenous ones and followed up with pills and so far, although I’ve felt a bit sick most mornings, I haven’t thrown up.

Other side effects, like hoarseness, are rare and might not happen at all so it’s a case of having to deal with them as they hit you. I dealt with hoarseness with a special mouthwash from the GP and gargling with bicarbonate of soda. They both really helped but because the onset had been so quick – within two hours of having the chemo – I wasn’t even sure it was a side effect and wondered if I’d caught a cold, but my chemo nurse said that it could be the start of oral thrush, a more common chemo side effect.

Another thing I didn’t have ready was effective pain relief because there was no saying I’d have any pain at all. As a result, by Day 3 I was really suffering and by Day 4 I was becoming less able to do anything because of the debilitating effect of not being able to sleep and not being able to move. I could hardly get out of bed and was feeling very down.

I tried “baby-dose” painkillers, the sort that most of us have handy at home, but they did nothing to alleviate the shooting pains in all my bones and joints, even my fingers and toes. I’d got to the point where I was having trouble walking, sitting, standing, laying down and just about every other activity and I felt as though every nerve was trapped and that I’d aged 20 years overnight.

As soon as I told my oncologist and my Macmillan nurse just how bad I felt I was immediately prescribed Co-codamol 30/500 (not baby-dose ones) and Ibuprofen 400mg. I could have got even stronger ones if I’d needed them, but luckily I haven’t so far. Once my pain was brought under control I managed to get some sleep again and was then able to do almost everything I wanted to with a bit of effort. Such was my confidence that on Day 9 I tried doing without my painkillers but soon found that I had tried too soon. Within a few hours I restarted them and began to feel much better. They work so well that later that same day, and the next, I was able to go for a couple of long-ish (very slow) walks. On both days the weather was too good to waste looking out of the window so it was good to be able to enjoy it. The walks knocked me out in a nice way, but relaxed me and helped me sleep like a log.

I’m now about half-way through the first chemo cycle, the point when my body should start to recover in preparation for it all to start again with cycle 2. Now that the pain is being managed I am pretty sure I can get through all the chemo but if you’d asked me a week ago before I had the right painkillers I’d have been very unsure. I was definitely faltering and had told my partner that if I said I was going to stop treatment that he was to talk me round using every reason he could think of. Whereas all the other side effects on their own were things I could have just put up with, the pain would have been the thing that mucked it all up. I’m really glad that’s not now going to be the case because it’s still my aim to live to be a cranky, cantankerous 90 year old and I stand more chance of achieving that aim with chemo than without it. Ask my partner and he’ll tell you, based on the last ten days alone, all I’m missing is the birthdays. 

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.

Dark Days Ahead?

The churning in my stomach didn’t go completely but it started to subside as I slowly came to terms with what my last blood test result meant. Seeing my oncologist this week helped but I’d be lying if I said what’s happening, and what’s likely to happen, isn’t playing on my mind, because it is. 

We (that’s me and my oncologist) agreed that for now I’ll stay on the Bicalutamide then, if the next PSA blood test that I’ll have in June confirms that the cancer is active again, which she thought was more likely than not, the plan is I’ll go on to a 6 to 10 cycle course of Docetaxel, which is one of the chemotherapy drugs, at the same time as taking Bicalutamide. Once the course of Docetaxel is finished I’ll continue with the Bicalutamide but will add another hormone therapy called Zoladex.

Unlike Bicalutamide and other hormone therapies that are given indefinitely until they stop working, the chemo is a set course given in 3 week cycles. I’ll have 6 or 10 cycles. I didn’t know what a cycle was so I had to look it up. What I read is not straightforward and seems to involve algebra and trigonometry, both of which I failed miserably when I was at school about a hundred years ago, but assuming mine starts sometime in July it’ll end sometime between mid-October and mid-January. I could get between 1 and 2 years more by going on to chemo now than if I waited until I was on my last legs, according to the encouraging results coming from the Stampede Trial, so 6 months of chemo, a buggered holiday and a not-so-Merry Christmas seem to me to be a very small price to pay. I can understand why some people might not want to try it because they could have a bad time on chemo and then not live any longer, but for me it’s definitely worth trying and I do want to take the chance.

For now I wait. Everything hinges on the next blood test. In the last few days I’ve had three different people tell me that I’m handling all this well. I’m not, I’m just being me. Until last week my brilliant handling of the situation had involved kidding myself that maybe things weren’t as bad as I’d been told a year ago. I’m not calm all the time (ask my partner) and I’m still unable to think of the inevitable. I put it to the back of my mind. I’ve been having restless sleeps and wake up in the middle of the night, my mind racing and thinking about everything. My last blood test result changed things inside my head. It made reality sink in that little bit more. If I didn’t know before I really do know now that nothing is going to cure the cancer (my badly behaved cancer is how it’s been described) but if Docetaxel and Zoladex can slow it down and give me more time that’ll be better than nothing. 

Extra bit: Since posting this a few friends have contacted me thinking I was already on my last legs. I’m not. Honest I’m not! Sorry if I gave that impression, but I’m genuinely touched by everyone’s concern. What’s described above will hopefully extend my life beyond what it would be if I didn’t try it. At the start of 2015 I was told I had about 7 years on average, more or less, and I’m trying to make sure it’s more. I still look very well (far too well to be offered a seat on the Tube).  It’s true that everything that’s going on has given me a lot more sleepless nights recently, and boy do I get knackered easily, but I’m out and about all the time and I fully intend going on several marches this year (and next), including the May Day one in London and the Pride March and anything else that takes my fancy, although anything after July this year might be a bit more difficult than usual.