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.

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.

No photographs please

New Year, New Me. I hope so. I really don’t like what cancer and its treatments have done to me but the worst part, the part that’s obvious to others as well as to me I mean, is my appearance. That’s became more obvious over the Christmas break when many photos have been taken, photos with me in them, photos that I’ve seen. Jeeeez, talk about aged. While I’m thankful to have had chemo and everything else to keep this bloody cancer at bay I really could do without the fat face, the big gut and the bald head that comes with it as though it’s a job lot, which I suppose it is. I need to lose 20 kilos by next week. Admittedly I shouldn’t blame every kilo on cancer, but sod it, I will.

As far as the chemo after effects are concerned, things are getting better. I’ve got a lot of energy back, unfortunately not enough to venture out on New Year’s Eve though, my finger nails are looking less unsightly and the ridges are growing out and, although I still look bald, my hair does seem to be starting to grow a bit faster and my facial hair definitely is, but it’s still not beard material – I reckon it’d take me a couple of months to grow one. My legs look like I’ve shaved them but, weirdly, the hair on my arms never completely dropped out. In those areas where the sun should never shine I’m like a prepubescent kid now. While I’m hoping things return to their normal hairy state down there pretty soon I am not looking forward to the itching, prickly, scratchy stage. I thought I felt a bit queasy during the chemo but it’s only now that the sickly feeling has subsided that I realise just how bad it was. It’s amazing what you can get used to without realising it.

Despite the photographic injuries to my vanity the festive season has been pretty good, considering I only had my last chemo 6 weeks ago and my last steroid just 2 weeks ago. I managed to get to Brussels for a day the week before Christmas, something that’s become one of our traditions over the last few years. The main reason for going is to buy the now essential Christmas chocolates, one of the few things left that we don’t have all year round, along with Christmas Pudding and turkey. This time while strolling around we found a cosy little bar that we’d never been to before. Unfortunately we only had time for one drink in there before having to rush for the train home, but we’ll definitely be paying it another visit. The trip exhausted me so much that I slept for 11 hours solid that night, but the day was so satisfying that it was worth it.

A few things that I’d usually have done in the lead up to Christmas fell by the wayside this year, mainly connected with going out and seeing people. A case of the spirit being willing but the body saying “you must be joking”. Nevertheless we had a really good time. Nothing raucous, just chilling, no all nighters in the East End like we used to, if only we still could, but some long walks, lots of nice food and a little booze. I never did drink much and used to get sozzled on a pint, two at the most, but these days I just need to look at a bottle of booze and I start swaying. I’m a really cheap date if anyone’s into an ageing, fat, bald bloke. Next Christmas I hope to be a lot better. 

Happy, Healthy New Year everyone.

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.

Persistent little bugger

I should have had my sixth and last cycle of chemo today but it’s been postponed by a week as I’ve had a bad infection for the last two weeks that I haven’t been able to shake off, maybe down to my weakened immune system. It started with a sore throat and I was told to go to A&E.  There I was given intravenous antibiotics, which might seem over the top for a sore throat but when you’re on chemo any little bug can turn into something far more serious, e.g. sepsis.  I was also given some oral antibiotics to take home, but they didn’t seem to help much. I have some different antibiotics now though and today I’ve noticed a definite improvement so, fingers crossed, I’ll be ready for next week.

Cycle 5 has not been uneventful in other ways, either. The previous side effects have been present for most of the last three weeks, in particular the severe fatigue, the pain, the constipation, the loss of taste and the very low mood – I’d really underestimated the effect chemo would have on how I felt in my head – but in addition a couple more annoying side effects increased this time, like the uncomfortable ridges in my now discoloured finger nails. My finger tips feel different, too. I can still feel things but the sensation has changed, things feel almost silky when I know they shouldn’t and my hands briefly seize up from time to time for no apparent reason. I go to get hold of something or press something and it’s like non-painful cramp sets in. My eyes, too, have been affected – they’re sore and very watery.

I’m coping with the chemo but it’s hard to downplay its relentless negative effects, apart from highlighting the one big positive that shines through like a beacon in the fog, putting all the negative stuff into the shadows, and that is my PSA level, which is down again to 0.102, beating the last “lowest ever” of 0.158 and for me it makes it all worth it and reaffirms that I made the right decision about having chemo. No one can say how long the low PSA will last, could be 6 weeks, 6 months or 6 years, but as far as I’m concerned any amount of time that the cancer is held back is a bonus.

Fingers crossed for cycle 6. 

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.