Man up yourself!

From my male perspective women with cancer get loads of extra help and support when trying to adapt to the changes to their bodies and body image caused by cancer and its treatments. So they should, but men should too.

Ever since my first treatment it’s been a bugbear of mine that men with cancer going through the same sort of things as women are expected to just get on with it, with the implication that we’re somehow less of a man if we mention our painful sore skin or lament the loss of our hair. I was actually told to man up. It was meant as a joke but some jokes aren’t funny.

Fortunately it’s finally starting to be recognised that men with cancer need extra help with treatment side effects, too, to complement what we already get from our doctors and specialist nurses.

A charity called Look Good Feel Better has been trialling workshops and masterclasses especially designed for men whose cancer treatments have left us with scars, sore or painful skin, redness caused by hot flushes or burst capillaries, no eyebrows, thin hair, no hair or bald patches in our beards, to mention but a few.

On its website Look Good Feel Better currently states (but hopefully soon to be amended) “Our free confidence boosting skincare and make-up Workshops and Masterclasses are held across the UK for women undergoing treatment for any type of cancer”, so they’re not new at this, in fact they’ve been going for 24 years, but providing the Workshops and Masterclasses for men is new, and very welcome because, even if make-up is not your thing, having a penis doesn’t mean you don’t need a confidence boost when you’ve got cancer.

I recently went to one of the trial workshops myself, which was attended by nine men of assorted ages where we were looked after by the charity’s paid staff and some volunteers who’d given their time and skills for the day. Amongst them were two guys who were skin care experts who not only worked in the business when they weren’t volunteering but had also had cancer treatment themselves and it was obvious from the things they said that they understood what cancer treatments could do to men’s bodies and how it made you feel.

We were given a goody bag full of free samples (and very nice they are, too) but the workshops aren’t trying to flog you anything. They are just trying to help those of us whose skin, hair, appearance and general wellbeing have taken a massive knock from cancer treatments to recover a bit of our former selves and they do that by freely giving us the benefit of their professional knowledge. My preferred option would be a time machine to take me back 5 years to before my body was nuked but being told which products might make my hair grow back properly or could hide scars and stop my radiation and chemo damaged skin from drying out, itching and becoming painful is a close second.

If you’re a man with cancer, no matter what your age is, I’d recommend going to one of these workshops if you get offered the chance. There’s enough to contend with when you have cancer so why turn down something that could help? It’s a no brainer and if nothing else you meet other guys in the same boat as you, it’s a good laugh and you get to find out that eyebrow touch up pencils also come in grey and they can be used in your beard!!

Not that I need grey, of course.

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Cancer meds unavailable

I cannot get the cancer meds I’ve been prescribed. When I went to pick up my monthly prescription two days ago the pharmacist told me that he has been unable to get any Bicalutamide tablets for the last 3 weeks. When I tried again the following day he’d still not been able to source any.

I’ve been on Bicalutamide, which are hormone therapy tablets for prostate cancer, for almost 3 years and have to take a 150mg dose once a day, every day. They are helping to keep me alive and are something I need. I do not keep a hoard but get them as I need them, so I have no back up supply.

My cancer is the most common cancer amongst men in the UK with over 47,000 of us being diagnosed with it every year in this country alone and Bicalutamide is one of the main drug medications used to control it. I searched online and found the “shortage” started about a month ago, not just of the pills I have to take but of around 100 different drugs that treat prostate cancer, breast cancer and mental health conditions, so there must be thousands of us affected by this.

From what I’ve read (click here), the “shortage” looks like it’s been caused deliberately. The drug companies want more money but the UK Government or NHS England, or whoever it is that orders drugs for our NHS, says either there isn’t any more or they’re not prepared to pay the price. Meanwhile those of us who depend on our meds to keep us alive or functioning normally physically or mentally are stuck in the middle.

I don’t know the rights and wrongs, the why and the wherefore, I depend and rely on others to ensure our NHS is properly resourced, in this case with drugs, but it feels to me like someone high up isn’t doing their job properly. Whatever the reasons, it should never have got to the stage where patients are used as pawns and medicines become unavailable.

I saw my oncologist just last Wednesday before I knew of the “shortage” and, when I asked, was told I definitely cannot have a break from treatment (my cancer is not a well behaved one). Maybe the couple of days I’ve not had my meds so far won’t make a difference to me, I honestly don’t know, but I have no idea how long it will be before I can get the pills and this enforced break is causing me great stress and anxiety, which is exactly what I’m told i should be avoiding.

This should not be happening!

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.

The cancer course

Spoiler Alert – this one is a bit heavy …… 

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

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

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

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

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

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

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

Chemo 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. 

Dark Days Ahead?

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

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

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

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

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

Stomach churning moments

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

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

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

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