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?

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High hopes

I’ve had a few more side effects during the fourth cycle of chemo and the existing pain lasted longer, although it got less and less approaching the end of the 3 weeks. The most unwelcome was the down feeling I felt during the first week or so, like the proverbial black cloud descending (see previous post for proof). It’s not exactly a new side effect, but pre-cancer and pre-treatment I can’t remember having experienced it, certainly not to such an intensity. I’m not sure if that was down to the relentless nature of the chemo or the chemo itself or the hormone tablets that I’m also taking, as hormone therapy is notorious for affecting your mood. Whatever the cause it’s bloody unpleasant (this week’s massive understatement). When the black cloud dispersed after about a week it was not a moment too soon. 

I have chemo cycle number 5 today and I’m going into it on a high as I got my latest PSA result yesterday. I’m pleased to report the chemo is having the desired effect as my PSA level is down again. It now stands at 0.158, the lowest it’s ever been. I know I mustn’t get my hopes up, I’ve done that before and sworn I wouldn’t do it again, but it’s difficult not to. I hope it carries on going down and stays down for a long time. I’m still aiming to get to 90. 

No, not all men affected by prostate cancer are straight and no, my wife will not be picking me up after treatment.

I just read an entry from Nick Wright on the Prostate Cancer UK blog entitled “Life after prostate cancer – it’s about more than surviving”, which, for me, was very inspiring. I liked the piece. I even clicked on “Like”. I’d recommend anybody interested in prostate cancer read it. But, there’s always a “but”.

I have often been inspired and encouraged by things I’ve read and heard over the last two years since first having the word “cancer” mentioned to me by my GP. On almost every occasion that inspiration has soon dissipated when the realisation dawns that, once again, what’s being spoken or written about is done without any thought that people like me might be affected by this disease.

The assumption always made is that a man with prostate cancer (a) must have a partner and (b) that partner must be a wife. Why?

Nick Wright’s piece was no exception. For example “The wives of the men on the programme played a key part in its success. And it soon became clear that they were having a tough time too”.

Nick, if you are reading this, my male partner of 30 years is having a hard time. He’s supported me all the way and is having to cope with the big changes in our life himself. He would also benefit from the great support you mention (and it is great support by the sounds of it). Language can be very inclusive and positive. It can also be very exclusive and negative.

As advised in the last paragraph of Nick’s blog entry, I did contact Prostate Cancer UK a few months back to see if there were any plans to start some sort of a support group in the London region for gay and bisexual men affected by prostate cancer. The reply amounted to “there’s no demand”. Apparently, there is demand in Birmingham where Prostate Cancer UK were recently looking for a support worker for a group it was setting up there.

I’m no expert on demographics, but I reckon it’d be a fair bet to say the London region has a larger population of gay and bisexual men than Birmingham and that it would follow that there’d be a larger number of us likely to be affected by prostate cancer in London than in Birmingham. Of course, it’s possible the person at PCUK who responded to my enquiry didn’t have a clue and genuinely thought London doesn’t have a large gay population. A bit like the old days when it was believed you’d only find a “homosexual” if there was a theatre in the town. For info, London has lots of theatres.

Luckily not everyone at PCUK is so totally unaware and unworldly. The organisation has recently published some excellent information for people like me – http://prostatecanceruk.org/information/living-with-prostate-cancer/gay-and-bisexual-men , so there is hope.

It has also provided some help to at least one of the other two groups that have started in the UK in the last year, in addition to the one mentioned in Birmingham. A year ago there were no groups in this country for gay and bisexual men affected by prostate cancer, today there are three – the other two being in Manchester (Out With Prostate Cancer) and Greenwich in South-East London (Metro Walnut).

Our NHS still has a long way to go, too, when it comes to understanding that not all men with prostate cancer are straight. I’ve met some people in the NHS who have been instantly supportive when finding out I’m not straight. Unfortunately they’re still a minority. One Consultant genuinely wanted to know how prostate cancer was different (not worse) for a man who isn’t straight and was very interested when I explained. He is one of the people who is now attempting to start a support network in a region very near London for gay and bisexual men affected by all forms of cancer. At the other end of the spectrum I’ve had to repeatedly explain and repeat several times to the same people that “no, my wife will not be picking me up after treatment, my male partner will”. Assumptions being made are bad enough but when the same people insist on referring to my non existent wife it becomes very trying.

I didn’t used to bang the gay drum, well not as loudly anyway, but when you’re affected by something as major as cancer you tend to ask yourself why you’re still putting up with being ignored and excluded by organisations that are supposed to treat us all fairly and with dignity and respect. Having asked myself I decided I would no longer just out up with it. That’s one reason why I’ve written this.

Information on the three groups that currently exist in the UK for gay and bisexual men affected by prostate cancer can be found at the end of Prostate Cancer UK’s Prostate facts for gay and bisexual men.

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