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. 

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Chemo – 1 cycle down, 5 to go

I had my first chemo session a couple of days ago. I’m pleased to report that the place felt far less oppressive with people in it (see previous post). It was not busy but the atmosphere was fine and, importantly for me, there was humour, too. 

The chemo session itself was pretty low key and the most discomfort I experienced lasted just seconds and was the cannula going into a vein on the back of my hand. That didn’t happen until after a hot pad had been warming up the area for a while before in order to minimise discomfort. 

The first thing to go in was some saline, which didn’t take long and, straight after, two IV drugs Dexamethasone and Ondansetron followed. They took about half an hour and then the chemo drug Docetaxel went in, which took a further hour. All this time I spent in a reclining armchair and I had a cup of herbal tea while I was mucking around on my iPad. I was connected to a drip for about 2½ hours in total.

I thought I was going to get away without more pills to take home but the nurse brought me a bag containing four lots and a “Drug Plan” explaining when the different ones had to be taken and why. Two are the pill form of the ones that went through the IV drip, Dexamethasone and Ondansetron. The other two are Metoclopromide, which I take now, and Prednisolone, which I don’t start taking until I have stopped the others in a couple of days from now. Their main purpose is to counteract sickness so it’s important to follow the plan, but they have side effects. The Dexamethasone mustn’t be taken after lunchtime because even that early in the day they still impact on sleeping, as I found out on the first night when I remained wide awake most of the time. So far the pills have performed their primary function with distinction as I don’t feel sick at all (yet). 

I was also given some Movicol, a laxative. I’m not sure which one of the meds causes constipation but believe me it works quickly. I held off taking any Movicol for two days because I’d hoped things would settle down. They didn’t, so I have and now await the torrent.

Less than two hours after leaving the chemo place I started to get hoarse and less than 24 hours later I had almost lost my voice. Could be coincidence but on the advice of the chemo nurse I went to see my GP because she said I might have oral thrush caused by the chemo. It seemed a pretty fast side effect to me but I’ve been prescribed a mouthwash called Nystan. The hoarseness has improved a bit but my taste buds are now very confused. Taste changes are a side effect of chemo and things had already started to taste a bit different, so I’m not sure if it is the Nystan but everything now tastes very weird. I hope that doesn’t last long.

I am drained except when I want to be – all day through I long to sleep but late at night when I’d much prefer to be able to sleep my mind is racing and I have a spurt of mistimed energy. 

I’m still holding off on shaving my hair. In my head I’ve decided that as soon as it starts falling out I’ll finish the job off, but it’s still a daunting prospect. Getting rid of it in one go is not the same as losing it gradually over years plus the eyebrows and eyelashes will be falling out at the same time. I’m sure there was a Star Trek character with the sort of looks I’m going to end up with but I can’t remember which one. If only this was an episode of Star Trek. I remember the Emergency Medical Hologram in Star Trek Voyager merely dishing out a few pills to completely cure someone’s cancer. Imagine that, eh!

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. 

Bloody wound up

I had the sigmoidoscopy that I was waiting for. On the plus side no cancer was found in my bowel. Great news! On the minus side there was some inflammation that the report described as “mild Radiation Proctitis” or, in other words, radiation burns. I agree, it is mild now, but it bloody well wasn’t for 4 days at the beginning of June when I was screaming with the pain. The worrying thing is that it could flare up again, which is not such great news.

Once I’d had the sigmoidoscopy things started moving much faster on the chemo front than I’d expected. I’ve already had a voicemail asking me to call so that the process can start. There are blood tests to have and things to be explained to me before I get the first dose. That’s good because I wouldn’t want to have to wait long, but the impending move to the next stage of treatment has caused lots of conflicting feelings to come to the surface. While I really appreciate the care I’m getting I also feel trapped by events in that I have no control over them but, even more than that, I feel like I have no control over my life anymore. It’s like being a kid again where I can’t just get up and go, I can’t just do anything, the bloody cancer controls everything I do and everything I want to do.

As a result I’m feeling very wound up at the moment and feeling down as well. How can both at the same time be possible? I thought I felt unsettled and emotional before but those feelings are now much more pronounced. I can’t keep my mind on anything, I’m absent minded and I’m all over the place and, once again, my healthy appearance belies the way I’m feeling inside. Thanks to everyone who says “you’re looking well“, I know you mean well, but I don’t bloody feel it. I bet anyone who’s ever had any sort of life changing illness would understand, just as anyone who hasn’t might think I’m fussing over nothing. Until it happens to you you can never really understand. I didn’t. Where I find myself must be a bit like being in prison (not that I ever have been in prison I hasten to add) in that I feel trapped and I want to escape from all that’s going on. I want my life back. I want my independence back. The first thing I’d do, if I could, is book flights to where we were a month ago with friends (was it really only a month ago?) where it’s hot, dry, sunny (and not raining all the time) and the cancer was somewhere in the background and not laying down the law, but I can’t because now the bloody cancer is back in charge.

It’s taken me a while to see what my priority must be and it’s not a holiday. Me and my partner have talked things through and he, like me, would prefer to be able to fly off into the sunset, but he’s gently pointed out why we really ought not to. He lives all this with me 24/7 and understands more than anyone, so I tend to listen (eventually). I also spoke to my Macmillan nurse; we know each other well after 2½ years and she’s got a pretty good grasp of how to handle me. I also called the Prostate Cancer UK helpline who provided me with the factual, non-personal stuff. But what really put things into perspective was something I read online about a guy who’s the same age as me and who works in the same industry that I did. He had put off his chemo so he could visit his family in Canada only to find that when he got back he no longer qualified for the treatment anymore. Imagine how being in his position must be and there I am thinking I’ve been dealt a bad hand.

I’m still bloody wound up though. 

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.

GAY and AGEING – In Hospital

eknewguy

COMING OUT

It is over 40 years since I took my first major steps in ‘coming out’ as a gay man. Not for the carefully staged video explaining to adoring fans that I was dating another man and nor for me the consequent letters of congratulation arising from it. No, this was, and still lingers in the memory as, a major event accompanied by not a little trauma. In the space of just a few days I stood before distraught parents, an incredulous spouse, and unbelieving fellow workers, telling all of them something which obviously seemed to them, at the time, as not being far from the announcement of the imminent end of the world. For me I feared that it might indeed be the end of my world.

The years have considerably numbed that feeling. Well, at least that’s what I thought had happened until just a few months ago when…

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Crackpot cures

I did something I said I’d never do. I bought “alternative meds” on the Internet, some capsules called Pomi-T. For legal reasons they are described as a food supplement and contain four ingredients in concentrated form that are supposed to help with prostate cancer – turmeric, pomegranate, broccoli and green tea.

After my last hospital appointment I congratulated myself on my healthy lifestyle. It was because I was asked if I was “doing the peripheries like diet and exercise” and was able to honestly reply that I was and had done for years, on the diet side anyway, and the exercise side has vastly improved in the last couple of years. 

It took a week before something clicked and the seed my doctor had planted turned into the thought that I could do more. The first thing I did was to buy a juicer, closely followed by the capsules, mentioned above.  

That was 6 weeks ago and since then I’ve taken 2 capsules a day and drunk an array of (hopefully) healthy concoctions of assorted flavours, colours and consistencies, some better than others. 

My diet is pretty good, that wasn’t a lie to keep the doctor happy, but the reason for the juicer is not so much to drink juice but to try to get the same four things into my body in another more palatable way. As well as the capsules I’m adding turmeric and pomegranate to the juices. I tried broccoli but it took a lot of the raw veg to make a tiny drop of juice. As for the green tea, I make that with tea bags.

I have no idea if these things will do any good but, at this stage, with chemo and additional hormone therapies a possibility I feel like I’m doing something positive that might help.

Today, by coincidence, I was sent a link to a page on the Cancer Research UK site called “Food Controversies“. If my expectations had been high this page would have brought me straight down to earth. My partner calls what I’m trying a crackpot cure but I’m not kidding myself about that as I don’t expect to be cured, just that the capsules and the juices might help slow the cancer down. If they don’t they’re not doing me any harm (I checked with my oncologist) so why not give them a try? 

Beating prostate cancer

“Riveting” and “stimulating” are two words I’d use to describe the Beating Prostate Cancer Roadshow that I went to in London on 3rd May. It started at 6pm and finished at 9pm, with a half hour break when we were fed and watered. If three hours sounds like a long time it wasn’t, it flew by, helped along by some very interesting speakers who didn’t try to blind anyone with science.

I wasn’t sure what to expect as I’d never been to anything like this before so I called in advance to ask if it was for patients. I didn’t fancy being the only one in a room full of boffins who didn’t speak Medicalese. I was assured the event was for everyone affected by prostate cancer – patients, carers, health professionals, the lot, and it turned out to be just that with a good mixture of people. 

There were eminent professors and surgeons and other assorted experts but there were also people like me who had had to learn fast what a prostate cancer diagnosis means. In our own personal ways we, too, were experts and, as it turned out, the ones in the “eminent” bracket were as anxious to learn from those of us directly affected by the disease as we were to learn from them. 

I heard about a few clinical trials and learned loads about what’s happening in trying to find a cure, but the big thing I discovered (big for me, I mean) is that clinical trials are for every patient. I thought that you were only offered a clinical trial if the doctor thought regular treatments wouldn’t work for you or that you were about to pop your clogs. I wasn’t the only one there who thought that clinical trials had an image problem. I reckon the medical research people and health professionals have a lot of PR work to do to get the correct message out to patients, particularly if they want to attract more of us on to trials.

In addition to the specialist speakers there were information stands, too, including Prostate Cancer UK, Cancer Research UK and the Medical Research Council and APPLE. No, not the Apple, but the Association of Prostate Patients in London and Essex. There were others that had info on a couple of current clinical trials – CHHiP and PATCH – but the focus of the event was the STAMPEDE trial. That was the main reason I’d gone, not because I’m going on to the trial (I’ve been told I don’t quite qualify) but because of something that’s come from one arm of it, the arm that gives Docetaxel (chemotherapy) at an earlier stage than usual. If my PSA continues to rise I might be starting Docetaxel in the summer so I thought this would be the ideal opportunity to find out more about it. As a bonus, I think I can pronounce it correctly now, as well.

There was also someone at the roadshow from the Royal College of Music who was looking for people affected by cancer, not just patients but carers, bereaved and staff, who wanted to take part in a research study exploring the effects of music on the experience of cancer. I was asked if I’d like to join a choir. I can’t sing to save my life (no pun intended) but was told that not being able to sing was no barrier to this particular choir as no musical experience is required, so I’ve put my name down for it. Next stop the Royal Albert Hall? Highly unlikely. I don’t think they realise just how bad my voice is. 

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.

Stomach churning moments

If this wasn’t a respectable blog I’d be swearing now. Lots. I really need to. As loudly as possible. But wouldn’t you know it, there’s a guy here changing parts on the boiler and I don’t want to scare him off coz it’s going to be cold tonight, so the screaming will have to wait until the boiler is back in working order.

My bloody PSA has gone up. In the great scheme of things, not a lot, but it’s still the wrong direction. Ten months ago, after three months of hormone therapy, it had reduced from 2.4 to 0.227. Six months ago it went down a little bit further to 0.222. Now it’s up to 0.510. Before anyone says that’s incredibly low, I haven’t got a prostate anymore so it really ought to be zero.

For now we, both me and my partner, are more than a bit shocked. Knocked for six would be a fair description, him more so because he’s always convinced things will be OK. He’s looking for information on the Internet, anything that will give us some insight, not just into what’s going on inside me but also what is likely to be done about it. We’re avoiding the sites that recommend snake oil as a cure for everything from cancer to warts, although we might come back to them.

I see my oncologist next week. Maybe she’ll tell me that it’s just a blip, nothing to get worried about. Until then the stomach churning goes on. With a vengeance. Bugger it.