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.

Who would you wish razor blades up the bum on? 

The side effects from this year’s radiotherapy aren’t a patch on last year’s but it appears I spoke too soon at the end of my second week of daily sessions. Having tempted providence I was rewarded in the third and final week – punished might be more apt – by a considerably increased fatigue level and much more soreness when I pee. So far, though, the feeling of passing razor blades when I poo, which I experienced last year, has not happened. 

Although the 15 daily sessions of radiotherapy are over I was told the side effects can continue to increase for a couple of weeks before starting to diminish. Hopefully, they won’t extend to my bowels. Razor blades up the bum is not something I would wish on anyone, with 2 or 3 possible exceptions who immediately spring to mind!

Why the difference in the severity of side effects? Several reasons, I think. For a start the radiation this time was aimed at a slightly higher location on my body – the pelvic lymph nodes as opposed to the prostate bed (the area where my prostate used to be). Then there’s the fact that I started from a much stronger position this year. Last time was only six months after major surgery and my third bout of septicaemia and I was extremely weak even before the sessions began. This year I had recovered a lot. Even the hormone pills I’d been taking for the previous four months, and have remained on throughout, had not weakened me to anywhere near the same extent. Also, since February I’d been going swimming and to the gym a few times a week and generally being a lot more active, which I now have to get back to being. I was disappointed I’d not been able to fit swimming and the gym in for the last three weeks.

What happens next? We wait, that’s the gist of it. Wait to see what my next PSA blood test shows in early October and then wait to see what happens when I stop taking all medication. What we’re all looking for – me, my partner and my medical team – is a PSA level that’s around the zero mark and that stays there without hormone treatment or chemo. That would indicate the treatment has been successful and I’ve been cured or, at the very least, that I’m in remission.

The approach of the end of this latest treatment prompted me and my partner to chat about things the other day. Neither of us had imagined how our life would change when I first started feeling ill at the start of 2012. So many things have happened over the last three and a half years and not all of them medical ones. We got on to the subject of work, which we both reluctantly gave up albeit for different reasons, and agreed a million quid wouldn’t get us back now. Apart from a handful of occasions, we haven’t had to set the alarm to wake us up for ages. Take my word for it, it’s marvellous to never have to get up when you’d rather stay in bed.

Anyone who has had a planned lead up to retirement knows how much of an impact it has. It’s a much underestimated major life event where you lose a massive part of the social structure that you’ve built up over a lifetime. A structure that is made up partly of friends, work colleagues, a routine (even when you work shifts like I did) and just plain having to be somewhere at a given time. Most people moan about work whether they like their jobs or not. Where I worked moaning was in the job description (and with good reason in many instances) but most of us liked both what we did and most of the people we worked with. Imagine what it’s like when you don’t get a chance to plan and instead you’re unwillingly propelled towards giving it all up and almost overnight an entire way of life is taken away. 

Although there’s still much uncertainty at least we’re both now able to move on for a while. We can plan slightly ahead. We can think of using all the free time we have for things we want to do and, luckily, we can afford to do it, unlike so many people affected by cancer and other major illnesses, many of whom can barely afford to get to hospital appointments let alone consider leisure pursuits. 

Cancer is a horrible disease to put it mildly, including prostate cancer, which a couple of inept doctors I unfortunately got lumbered with in the early days were unknowledgeable enough to downplay, but it’s brought it home to me even more that there’s always someone worse off. Despite everything I still think I’m very lucky.