High hopes

I’ve had a few more side effects during the fourth cycle of chemo and the existing pain lasted longer, although it got less and less approaching the end of the 3 weeks. The most unwelcome was the down feeling I felt during the first week or so, like the proverbial black cloud descending (see previous post for proof). It’s not exactly a new side effect, but pre-cancer and pre-treatment I can’t remember having experienced it, certainly not to such an intensity. I’m not sure if that was down to the relentless nature of the chemo or the chemo itself or the hormone tablets that I’m also taking, as hormone therapy is notorious for affecting your mood. Whatever the cause it’s bloody unpleasant (this week’s massive understatement). When the black cloud dispersed after about a week it was not a moment too soon. 

I have chemo cycle number 5 today and I’m going into it on a high as I got my latest PSA result yesterday. I’m pleased to report the chemo is having the desired effect as my PSA level is down again. It now stands at 0.158, the lowest it’s ever been. I know I mustn’t get my hopes up, I’ve done that before and sworn I wouldn’t do it again, but it’s difficult not to. I hope it carries on going down and stays down for a long time. I’m still aiming to get to 90. 

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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!! 

The best laid plans

The chemo seemed to be following a pattern. The first 10 or 11 days would be steadily downhill with a variety of side effects, many of which were starting to feel familiar, as though I was an old hand at all this despite only having had my first treatment less than 2 months ago. Around Day 11 I’d get my taste buds back, tea would be drinkable, the aches and pains would subside and I’d be on the upward slope towards the next treatment. It was all so predictable. So, with my oncologist giving the OK, we booked flights and prepared for 8 days in Spain to grab the last of the summer sun and warmth and to meet up with friends.

We were to fly out on the Sunday afternoon so as to be ready for a hard day laying on the beach on the Monday. By Saturday morning we had got as far as having the bags packed and all that remained to do was throw in the last minute stuff the next day, but when I woke up I knew I wasn’t feeling as well as I should be feeling. I checked my temperature and was relieved to find it was not “officially” high, but it was around 1ºc higher than my usual and the chemo book clearly said that merely feeling unwell was enough to warrant going to A&E, so we did. I honestly thought they’d just pump some antibiotics into me and send me home. I was half right. 

One of my blood results – the neutrophils – came back low at 1.4 and subsequently went down to 1.1. I have since been told it should be between 2 and 7. Also, I had blood in my urine. The low neutrophils level is a common side effect of chemo and means that the risk of getting an infection is high and the onset can be very sudden. I’ve got first hand experience of sepsis, having had it 3 times, and I’d rather avoid a repeat. Nevertheless, I was disappointed that rather than being sent on my way I was admitted and ended up spending almost a day and a half in hospital. I got out on Sunday afternoon half an hour after our plane took off. 

Just when it looked as though I wouldn’t be sunning myself in Spain and instead I was to enjoy the charms of an increasingly autumnal England, with its falling leaves, shorter days and morning mists, my Macmillan nurse and oncologist got together and said that if we could still get flights then we should go. As they quite rightly said, “life is for living“. I didn’t need telling twice and that phrase resonated the whole time I was away. I did my best to comply.

We got there later than planned but we did it! We had six fantastic days and despite feeling tired we’re both so pleased to have finished off the summer as we wanted to. The cancer and the chemo took second place and went right to the back of our minds the whole time while we concentrated on the serious business of relaxation. There were pills to be taken, of course, but strolling down the beach to the chiringuito to get a snack to take them with took the edge away. 

Now it’s back to reality, confirmed by having to flick on the central heating when we got home, but with our internal batteries recharged with enough solar power to last a few months and with the added bonus of finding out today that my PSA has gone down a little bit more to 0.239, I’m ready for chemo number 4. As ready as I’ll ever be, anyway.

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 – 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.