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.

My beautiful cancer

Ignore the title of this post, it’s not my beautiful cancer this time, but someone else’s.

I just watched the first two short videos made by another guy who’s currently on Docetaxel Chemotherapy for prostate cancer, the same type that I had. Like the old saying goes, a picture speaks a thousand words and these videos demonstrate that.

I found the videos interesting, informative and personal; they show one man’s journey through chemo (filmed by the man himself) that really resonated with me. I think they’re well worth watching for anyone who wonders what chemo might be like and each video lasts around 5 minutes each

Click here to see the videos

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.

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. 

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.