Frankly, my dear, I’m shagged out

We just had a great couple of weeks in Spain, on the beach and in the sea every day. It was warm to hot, mostly dry, very sunny and, as always, full of friendly people, both locals and tourists, especially our mates who we now regularly meet up with. As you’ve probably gathered, we like the place.

The only downside was nothing to do with the actual holiday but everything to do with my energy levels, which were noticeably down on a year ago. Last September’s short break doesn’t count as I was in the midst of chemo then but, whereas in June last year we walked everywhere, this year I needed to take several cabs and I just wasn’t up to much after eating in the evening. I could easily have slumped into bed as soon as the sun went down. If I was in any doubt about feeling more tired before before I went away, those doubts are now gone.

Now, I don’t know if this is all down to the post-chemo malaise that I’ve been told can last for ages or if it’s something more permanent but it’s yet one more chip away from the “old normal” that existed until not that long ago.

I’ve had it suggested to me that this could all be down to getting older (bloody cheek!). OK, it could be, but does such age-related change come so suddenly? When I look at others my age and a little older I don’t see them flaking out but I do see them walking, partying and, if not full of energy, certainly not totally depleted of it.

Since getting back home a week ago I’ve felt even more drained. I think I’ve got a virus added to the already present fatigue but I’m plodding on making sure I keep active although I’ve had to cut out the gym. I find myself wondering what idiot said holidays are good for you? 

As if all that were not enough, my PSA blood test was due. As anybody who has to have regular PSA tests knows there’s something called PSA Anxiety. It goes hand in hand with Scanxiety and both can drive you mad. I managed not to think about it while we were in Spain but it’s been on my mind ever since the plane home touched down with me swinging from being convinced that the cancer is dormant and will be so for some time to the PSA result coming back sky high and the cancer being rampant everywhere – not just once have I gone through this but a hundred times in the last few days. I know it’s daft, but there you go. 

I finally had my bloods done yesterday and today I got the results. The bad news is the PSA has gone up but the good news is it’s still very low and now stands at 0.074 compared to the even lower 0.044 that it was 3 months ago. I’d hoped it wouldn’t rise again for a bit longer but it could be worse I suppose. 

The other thing that my bloods threw up was my neutrophils level, which is low at 1.5. I don’t altogether understand neutrophils but I think they’ve got something to do with the body’s immune system and help to fight infections and they should be higher than 1.5, so maybe that could account for me feeling like crap? 

To paraphrase Rhett Butler in Gone With The Wind: Frankly, my dear, I’m shagged out – but not, unfortunately, in the way I used to be pre-surgery.  Nevertheless I have plans for the next few days that I intend sticking to. An elderly friend of ours who we all affectionately call Uncle Albert reaches a milestone birthday on Thursday and is having a celebration get together. As befits his advanced years there’ll be plenty of seats available so I should be OK. In fact, sitting next to him I will appear positively youthful. 

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Ahead of the game

A few times since I’ve been part of all this cancer stuff I’ve had doctors and other healthcare workers ask if I have any support. I always assume they mean support from family, friends and maybe even neighbours or formal support groups, so I’ve always replied yes, since I’m lucky and have all that. Some people with cancer have only themselves and I cannot imagine how difficult it must be for them to cope alone because, even when you’ve got support, it can be very hard, especially when you’re trying to get through treatment.

But there’s one source of support that I bet no doctor or nurse has ever thought I might have when they ask, and that’s my Trade Union. Although I’m now retired I remain a member of ASLEF, which is the train drivers’ union. I was still working when I got diagnosed and from that moment on ASLEF has been there, which was not a surprise to me since they had been there for me since the day I started on the Railway, just as they are for all members. They’ve supported not just me through all the tribulations that cancer brings but my partner, too, when other organisations that you’d have expected to help have done either nothing at all or, even worse, have done the exact opposite of help. 

Why am I writing about this now? Well, recently I was asked by someone who works in my union’s Equalities department if I’d like to come to our annual conference to tell my prostate cancer story. It wouldn’t be fair to name names on here when the person isn’t a public figure, but she knows who she is. She’s well and truly on the ball and does a great job and on this occasion she’s excelled herself, as I hope to explain.

I’ve had a few articles about prostate cancer published in my union’s monthly magazine over the last few years to try to raise awareness of the disease. This would be important in any union but particularly so in a union such as mine since it is still predominantly male and, with prostate cancer being the most common cancer amongst men in the UK, our membership stands a disproportionate chance of being affected, so really needs to be aware.

To be honest, when I was asked, I thought: how am I going to do this? I’m fine talking people to death when I’m part of a small group (you can’t shut me up) but I am not a natural public speaker who likes being on a stage, with all eyes on him. In fact, the thought petrifies me but, to be offered a platform where I might reach a large number of men who were likely to be as oblivious to prostate cancer as I had once been and to get them to consider having a PSA test, which I’d also once known nothing about, was an opportunity too good to turn down, so I found myself saying yes.

As unions go, mine is not massive with 20,000 members, and our annual conference reflects our size. What we lack in numbers, though, we more than make up for in mutual support not just amongst each other but also amongst those who are employed by the union and that was patently evident at our Annual Assembly of Delegates, as our conference is referred to.

We elect the people who run the union for us and have exceeded ourselves in the choices we’ve made in recent years by putting in place a progressive Executive Committee and a cutting edge General Secretary who all see the importance of ensuring members are aware of a range of issues, including those such as prostate cancer, something that can fundamentally change a man’s life but, potentially, could kill him, too.

There were around 80 male delegates at the conference and, on the day I was to speak, my union had paid for two prostate cancer charities to be there to provide PSA tests – one called Tackle and the other called the Graham Fulford Trust

I sat at the back and observed the conference for a couple of hours and then it came to my turn. I heard my name announced and felt my legs turn to jelly as I stood up but somehow I made it to the lectern; divine intervention perhaps? I had my notes with me so that I didn’t just dry up – I know I was telling my story but it’s amazing how forgetful you can be when you’re nervous and having chemo-brain doesn’t help matters. Besides, it’s one thing writing down all the most intimate and personal effects that prostate cancer chucks at you and posting it on a blog for all the world to see, but it’s quite another standing up at a conference for the first time in your life and saying it out loud and making it relevant. And I did tell all, because why hold back? We, as men, need to be open about these things because keeping silent helps no one, least of all ourselves.

I think I must have got all my speech out, although I know I faltered a few times as much from emotion as nerves, because suddenly all these people were standing up and clapping. That was unexpected and felt great but, what was even better, much much better in fact, 56 of the men there rushed off and spent their lunch break and then their afternoon break as well, queuing up to get their PSA blood tests done.

Some of the men came up and spoke to me and said they’d vaguely heard of prostate cancer but until they listened to my story they hadn’t really known what it was, what it could mean and what it might do. They also hadn’t known there was any sort of a test for it. 

I have heard all the arguments for not having a national prostate cancer screening programme (and the awareness raising programme that would go with it) but, as someone with this bloody awful disease, I’m not convinced by them. Keeping half the population in the dark about a cancer that can kill them if it’s not found and treated early doesn’t strike me as a sensible way of promoting good health but is a very good cost-saving exercise.

I hope that none of my 56 colleagues who were tested have any reason to be followed up but, if they do, I’m glad that my trade union and the two charities involved might have ensured that, if they have cancer, it has been found early and, therefore, can still be cured. 

Whatever their results, they have the woman in the Equalities department to thank for starting the ball rolling. We all help each other and I’m proud to be part of this union.

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.

Inside Health, Prostate Cancer

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

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

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

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

Good news 

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

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

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

Bottoms up

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

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

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

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

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

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.