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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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.

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.

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.