Lull before the storm?

There’s not a lot to talk to a doctor about when your already low PSA hardly moves and the latest appointment with my oncologist reflected that, turning out to be pretty much a non-event, apart from the fact that I didn’t see my usual oncologist this time.

The appointment didn’t last long. Most of it was taken up talking about the treatment side effects that I have rather than my PSA (which now stands at 0.492) or starting any new treatments, but the doc did chuck in a hint of how things might progress with an almost throwaway remark: “this is as good as it’s going to get”. Thanks doc. I sort of knew that I must be enjoying a lull before the expected storm but I guess it doesn’t hurt to be reminded that with everything I’ve had done I really shouldn’t have any PSA and that even a small increase should not be viewed lightly and that it should not be going up at all.

My next blood test and oncologist appointment are in 3 months’ time. Hopefully my next PSA result will show the cancer is having an extended break and I can again delay moving on to the next treatment. Imagine being able to say “I’m in remission“, that’d be nice. I’d be quite happy for that to be the case and long may it last if it is!

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Wrongly routed

The sheer terror that I felt on being told I had cancer is not buried as deeply as I’d thought. It came right to the fore a few days ago when a really close friend of mine who I worked with up to 4 years ago was also diagnosed with prostate cancer.

Those of us with this disease all have our own personal story but, if there’s one thing we all have in common, it’s that a prostate cancer diagnosis changes your life in ways you would never have imagined and that’s just how it is for him and his wife. In the space of just a few weeks their world has been turned upside down and they both now have decisions to make that no one ever prepares you for.

People usually rally round at times like these and he’s been truly overwhelmed by the support he’s got. I think he feels like he doesn’t deserve it but considering the support he’s consistently given to others I’m not surprised at the reaction of the people who know him. No one deserves to get this disease but it strikes me as being particularly undeserved when it happens to someone like him who has always tried to help others and has gone not just the extra mile but several extra miles including raising money for both Prostate Cancer UK and Macmillan Cancer Support.

From what he’s been told so far his cancer looks to be both even more aggressive and more advanced than mine. Lots of men who get prostate cancer get the “pussycat” version, the sort that lays on your lap and gently purrs for years and years or possibly gives you the occasional scratch to let you know it’s there, and that could be why the myth prevails that prostate cancer is nothing to worry about. But a myth is exactly what it is because there are others, guys like us, who don’t get the pussycat, we get the “tiger” and some tigers can be more vicious than others.

Since what happened to me he’s been having regular PSA tests so, although his cancer has moved too fast to be curable it is, nevertheless, still treatable. Had he not had regular PSA tests his cancer could well have got to the stage where very little could be done but, instead, it looks like he will have several treatments available that can keep him around for a good while yet. I certainly hope so!

That’s why, as shocked as he’s feeling (as all of us who know him are feeling too!), he’s already thinking of others and encouraging the other men he knows to get a PSA test because although it gets a lot of bad press it’s the best indicator there is (currently) to ascertain whether or not you could have a problem with your prostate.

You don’t have to be in one of the higher risk groups to get prostate cancer – he wasn’t and neither was I (unless you count being in our mid-50s when we got sick). Whoever you are, don’t kid yourself that it can never happen to you. If you don’t get tested for yourself and your family, if you know him, get tested for Steve.

Click on this link for more info about the PSA test: Behind the headlines: Symptoms, screening and PSA – should I have a test?

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.

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!

New Year 2018

As I’ve not posted for the last three months I thought it was time for an update. There have been things happening but, in a nutshell, it’s like being in the eye of a storm right now with the anticipation of what’s to come being worse than what’s actually going on.

I got my latest PSA result between Christmas and New Year and, for the third test in a row, it’s more or less doubled every three months since April 2017 and now stands at 0.417, almost 2½ times higher than the previous 0.176 just 3 months ago and almost 10 times higher than the 0.044 back in April. It is still low, but then it should be after the surgery, radiotherapy, hormone therapy and chemotherapy I’ve had over the last four years.

Because of the two previous results the rate of increase didn’t come as a surprise to me so no reason to feel shocked, except nobody told my head that so, by New Year’s Eve, the potential of it hit me and I felt a mixture of gutted, upset and fearful of what’s to come. The time of year could have had something to do with my frame of mind, Christmas and New Year evoke lots of memories after all, but so could the hormone therapy, which is notorious for inducing mood swings in men (I don’t watch sloppy movies in company these days). I started to get maudlin and wondering how many more New Year’s Eves I’d be having so it was probably just as well I didn’t have a party to go to as I would have been lousy company.

I’d also had a CT Scan a couple of weeks before the PSA test and that had shown no visible spread of the cancer but when that positive thought floated into my brain it didn’t stand a chance of taking root with the way I was feeling and instead I started counting how many treatments I’d used up and how many I had left.

It was with that in mind that I went for my hospital appointment today, which wasn’t as bad as I’d imagined it might be. My oncologist expects my PSA to continue to rise and estimated it’d be back into whole numbers by my next appointment in April but generally isn’t too concerned. For now she is going to leave my current treatment as it is as the objective she has is to eke out its effects, and those of my future treatments, as much as possible. I’m not out of treatments yet but there aren’t that many left so it makes sense to get the most out of each one.

I asked why I’m staying on Bicalutamide as, despite taking it, my PSA is still going up and the reason is that, if I were to stop, my PSA would rise even faster.

I also asked if I’d be able to have more Docetaxel chemotherapy in the future and the answer is no as all you get are the side effects but with no known benefit. However, there is a different chemo drug, Cabazitaxel, that I could have. I’ve read it adds around 2½ months on average to lifespan, not as much as Docetaxel but every extra day is worth grabbing, so definitely not to be sniffed at! When I’ve exhausted all the regular treatments I’ll then be put on clinical trials and one she mentioned was an Immunotherapy drug trial. I wish I’d written the name down but, still, it’s good to know that’s another possibility to try even if I can’t remember what it’s called.

Happy New Year.

Addendum – Since publishing this post I have found out the name of immunotherapy drug in the Trial that I mentioned above. It’s Rucaparib.

Getting run over by a bus

Déjà vu. I’m knackered – apologies to regular readers who must be bored stiff reading how tired I am but imagine how bloody debilitating and restricting the fatigue is, especially when in your head you’re still 18 and there’s so much you want to do but your body says “no way José”. Luckily I still have days, and sometimes even whole weeks, when I can do the stuff I want to do before the fatigue (and all that goes with it) kicks back in.

In addition to the fatigue there are also a few other things going on that are a nuisance, not least my scrotal hydroceles. Just a year ago I wouldn’t have known what they were but, as I’ve mentioned in previous posts, cancer is like a course where you’re always learning something new and given the choice I’d rather go on learning new stuff than graduate because the awards ceremony gets a tad hot and I won’t get to go to the party afterwards.

In everyday (polite) language, scrotal hydroceles translates to swollen balls. Mine vary in size from day to day and, depending on who you speak to, they’re either something that might have happened anyway or they’re caused by one or more of the treatments I’ve had, although opinions vary on exactly which as it could have been any of them. On its own the discomfort, skin irritation and occasional pain from the swollen scrote would be bearable but, add them to the man-boobs, the flabby midriff, the loss of body hair, the gritty eyes, the occasional hot flush, unpredictable waterworks and dodgy bowels, not to mention the numbness and pain in my left leg that is causing me to limp, for some reason the big balls are a side effect too far and are really pissing me off.

What really should be pissing me off though, is that my PSA has risen from its post-chemo lowest ever level of 0.044 just six months ago to 0.176 now. It’s still very low but is obviously going in the wrong direction and at a quickening pace so, sometime in the not too distant future I’ll be going on to more treatment, which my oncologist (who I saw today) says is likely to be Abiraterone with prednisolone or, possibly, Enzalutamide. I asked her if my prognosis had changed as a result of the chemo but it looks like it hasn’t. On the bright side at least it’s no worse.

Before starting chemo I read that it could slow the cancer down by between 10 and 22 months and it’s done that, but I optimistically assumed I’d be towards the top end of the bracket. My cancer, though, had other ideas and went for the bottom end, thereby living up to its reputation of being very badly behaved or, as I prefer to call it, a right bastard. I seem to want to swear a lot more lately.

With everything that’s been happening I’ve been having lots of soul-searching moments where I ask myself if I would choose the same treatments again and, when I’m thinking rationally, I have no doubt I would because without them I’d probably be either very ill now or very dead so, for me, it’s a no brainer. When I’m thinking less rationally though, which is usually when I’m feeling down, I think the opposite but, really, the only treatment I wish I hadn’t had was surgery, not because having your prostate removed is never a good idea (for many men it is) but because if it had been known beforehand how far my cancer had already spread then I doubt surgery would have been offered to me. I made the best decision I could have at the time but if there’s a moral there it’s the one that says you should never believe scans are foolproof.

My soul searching moments inevitably end up with me wondering how long I’ve got left, which I really don’t like at all because I start counting Christmases and, based on my unchanged prognosis, it comes to a grand total of 4 or 5. Nevertheless I remain determined to prove my doctor wrong! I reckon she’d like it if I did.

Others tell me that we’re all going to die and that any one of us could get run over by a bus, which is true, but no help at all. Take my word for it, the prospect of getting run over by that proverbial bus doesn’t hang over you in the same way. At least the bus might miss me but the bloody cancer won’t.

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.

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!!