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A new journey

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Today is my first full day of knowing that I have cancer.

The knowledge changes everything. And yet it changes nothing. I still woke up at the normal time this morning. I’m still about to go off to work. By the time I finish writing this I’ll have come home from work, probably eaten my supper as usual. There is no denying it though; today is the first full day of a new journey. A journey I never wanted to take, but one that I can not avoid.

Yesterday a consultant perched on the end of a couch in front of me and told me in a very matter of fact way that I have cancer of the prostate. It wasn’t what I wanted to hear, but it didn’t come as a shock. It’s taken a while to get to this point. Blood tests. More blood tests. Biopsy. Waits for appointments. Waits for results. Much of that while it’s seemed the pointers were towards infection—even my response to the biopsy (huge discomfort) seemed to be suggesting infection. But by the time I walked into the consulting room yesterday, the clues were different.

When the hospital rang on Monday evening to ask me to come in  on Tuesday I was at least expecting a definitive resolution to the question. To know where I stand, and to get on and deal with it. What became clear in the moments following the news that the biopsy had found cancer is that I’m still far from that point. Now we need to find out if it has spread beyond the prostate, and that means more tests. More waits for appointments. More waits for results. More uncertainty.

And it’s the uncertainty which is the real horror in all of this. This is the journey I am embarking on. Venturing into the unknown. Out of control. Waiting for things to happen. For results to come back. For appointments to be made. For treatments to work. The shitty day that was yesterday will be just the first day of a shitty year or two. There’s a good chance at the end of all this I’ll be cured, but it’s all set to be one hell of a ride.

It’s not the waiting…

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…it’s the fear that gets you. I’ll own that. It’s the fear that gets me. I’m fucking terrified.

Five days in and the numbness is wearing off. I cried about it for first time today. Away from distractions, things to keep my mind off it, in the still calmness of the bath. Why is it so difficult to cry? Is that about fear too?

Waiting is easy. I’ve been waiting months for the results from my final college assignment. But I know I passed that. I probably got a really good mark. And if I didn’t, so what? But this is different. This is fear. Every little ache in my body becomes a portent of bad news. A week ago I would have just brushed it off as a sign of my ageing, of not being as fit as I used to be. Today that twinge in my back absolutely fucking terrifies me.

Pull yourself together Chris. You lugged two boats about this afternoon, twisted badly to get them down the side of the house, loaded them onto the car. Of course your fucking back hurts! But in my mind this is the end. This is a sign that the wait will end in the worst news. It probably won’t. But you can’t reason with fear.

On not knowing what to say

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It’s a phrase I’ve heard a lot in the last week. “I don’t know what to say”. Said with shock, with sadness, with terror, with honesty and sincerity, and so often with more than a hint of guilt. As if you feel you ought to have just the right words there ready and waiting; words that would make it all better; words that would somehow convey that you care so much better than you feel you are doing.

Well here’s the thing. There is nothing to say. No words to ease my terror. No words to soothe my anger at this massive injustice. There is no reason that you should know what to say. You have no more power to change this than I do. I wish you did. And I know you don’t.

What matters is that you care. And when you say “I don’t know what to say” there’s a beautiful honesty in that that says you care more than anything else can. There is no need to say more. No need to feel bad that you can’t say more. When I tell you that I have cancer, “I don’t know what to say” is exactly the right thing to say.

Assume the worst

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I thought it would be a good idea to assume the worst. That way when I got my results if they were good I’d be delighted, over the moon. And if they were bad, I’d have made a start on coming to terms with where that left me. Facing death.

I was wrong.

The worst didn’t happen. My scans were clear. The cancer is contained in my prostate. That means I can be cured. Chop it out and all is well. Except it isn’t. And there’s the problem. I may have made a start with coming to terms with the fact that my life could be much shorter. But whilst I was focusing on that, I neglected to do anything about coming to terms with the consequences of surgery. And actually, they’re just as hard.

I’ll live, but not without cost. I’m facing some huge changes to my quality of life, to my self image and self esteem. This is going to be a rocky ride. Very soon I’m going to get a date. A date that represents the end of the life I’ve known, and the start something very different. The start of a new sexuality.

Diving in

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I’m about to crash. It’s been a long time coming. I’ve felt myself teetering on the edge for a while.

Don’t try to rescue me. Don’t try to comfort me. Don’t try to make it all right. It isn’t.

Don’t try to stop me crying. The tears need to come. Don’t be afraid of my terror. Let my anger be. It’s not about you.

Be there. Be with me. Hold me. But don’t hold me back. I need to dive into this. That is the only way to the other side. It may seem for a while that I am drowning. Know that I will make it.

Pants and prostatectomies

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They tell you a lot of stuff around a prostatectomy—before, during and after. Well not actually during, hopefully you’re fast asleep during, but definitely before and after. They talk about incontinence and impotence and pain management and deep vein thrombosis and catheter care and all sorts of other stuff. But nobody mentions pants1.

Which is bad. Because there’s a lot you need to know about pants if you’re having a prostatectomy. Here’s what I’ve learnt,  in the hope that it might save some of you the pain of having to work it out for yourself.

Forget boxers. Boxers are bad. By which I mean the loose type. And that’s the big thing to know. Somewhere you’re maybe thinking “after all that surgery, I want loose, comfortable clothing”. No you don’t.

You’ll leave hospital with a catheter in. And probably with instructions to try to move, to go for a walk each day. You might think loose pants are good because they won’t trap the tube. That’s the least of your problems.

The thing is, when you go for a walk in loose, comfortable pants your willy swings about. And the tube that’s stuck in it swings about. And with each little swing it rubs a little. And before long the inside of your willy is getting mighty annoyed about this and decides to let you know the only way it knows how—by really hurting. Wear tight, close fitting pants. It’ll save you a lot of pain.

I didn’t work this out until the day before my catheter was removed, not until after a long walk around a local park. Fortunately, when my wife had collected me from hospital someone had left have a tube of lidocaine containing gel on the table by my bed, and she had the forethought to figure it might come in useful…

Once the catheter is out you’re going to pee yourself. Hopefully not much and not for long, but it’s going to happen, and nothing anyone says to you beforehand will prepare for just how humiliating this feels when it does. So you’re going to need pads. And pads are no damn use in loose pants. Once again you’re going to need something close fitting.

Close fitting pants come in a variety of designs. Which is best? All of them. No, that’s not any of them. It’s all of them. Make sure you have lots of different pants. Why? The pant wearing is relentless. There is no respite (OK, the bath, but how long can you spend in the bath?). You’ll be wearing pants all night as well as all day. And the pressure of the waist band on the wound really starts to irritate. So stock up on pants. Each time you buy pants in the run up to surgery, ask yourself these things:

  • Are they close fitting?
  • Is the waist band in a different place to all the other pants I own?

If you can answer yes to both questions, these are good pants. Even if they have a fuzzy, pink ‘My Little Pony’ design on them. Forget the look. Go for comfort.

  1. American readers please note: I’m British. ‘Pants’ to me are smaller and worn closer to the skin than your pants. This article is about underwear, underpants [↩]

What’s that on your lip?

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It’s a moustache. I’ve decided to take part in Movember, an annual campaign to raise awareness of, and cash for, men’s cancers by growing a ‘tache.

Regular readers of this blog will know that in May I was diagnosed with prostate cancer. Actually I suspect regular readers of this blog would have known that even if I hadn’t mentioned it here, since pretty much all regular readers are my mum. In September I had a radical prostatectomy—my prostate was removed—and last Thursday the consultant told me that the histology looked very good. All the signs are that the cancer has been removed from my body. There are more tests to come before I can be certain, but for now, let’s assume that I’m cured.

My mo

7th Movember

It’s been a rocky road getting here. To start with, there was the coming to terms with the idea that I have cancer. And then some difficult decisions.

Option A is reputed to have the highest chance of no recurrence, but only by a tiny margin. Besides, the problem with studies into recurrence rates at 15 years is that they necessarily study treatment techniques in use at least 15 years ago, so the reality is that you’re going in blind in terms of long term success rates. Option A also causes urinary incontinence—usually short term—and carries a high risk of permanent loss of erections.

Option B has a slightly lower risk of not getting it up again, but a significantly higher risk of bowel damage resulting in faecal incontinence.1

Tough choices. And not just for men, but for their partners too. Consider it women, what would you prefer? A total change to your sex life, or never accepting another dinner party invitation for fear your bloke will poo his pants half way through the evening?

So, that’s my motivation then? I’m growing a mo so that men in future will never be faced with these horrible choices because they were vaccinated in their teens and prostate cancer has been eradicated?

No. Get real. That’s not going to happen any time soon.

OK, so that men will not be faced with these choices because the Urologist will just hand them a prescription and say “take one of these three times a day for a fortnight and you’ll be right as rain. I’m afraid there’s a risk that your erections will be an inch or two bigger, but we can probably treat that if it’s a problem to you”?

Nice fantasy, but no, not that one either.

I’m decorating my face and spending a month looking a complete pillock so that men will be faced with these difficult choices in the future. Because around 10,000 men each year in the UK don’t have a choice of treatment2. They discover they have prostate cancer too late. It kills them.

It feels a very strange thing to say after being diagnosed with prostate cancer at 47, having had my fitness, my self esteem and my love life shattered by the treatment, but I was lucky. I caught it early and I’ve probably been cured. And it’s the catching it early that’s the key. Caught early it can be cured. But let it spread and things look a lot worse. Prostate cancer has a strong preference for spreading into the bones, and once it’s there, it kills.

So I’m growing a mo this month to give me a chance to say “Guys, don’t ignore this”. Problems with your boy bits are scary, and it’s all too tempting to bury your head in the sand and pretend nothing’s happening. Don’t. Find out about the symptoms. Talk to your GP about check ups. Never ignore strange changes—it may be nothing, but get it checked out.

The choices I’ve faced were shitty, but a shed load better than dying.

Of course, a little bit of extra money for research into better treatments wouldn’t go amiss either, so do visit my Movember page and sponsor me.

  1. Of course, these options are a gross simplification. If you’re faced with these choices, don’t rely on anything on this page—talk to your specialist [↩]
  2. Source: http://www.cancerscreening.nhs.uk/prostate/statistics.html [↩]

Kicked when I’m down

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Work is bit crap at the moment. My post has been ‘deleted’ and I’m ‘at risk’. In the initial round of redeployment two of us were competing for one post on my current grade, and I found out yesterday that I didn’t get it. I’ve been offered a rather less inspiring post at a lower grade instead.

Although I was expecting this outcome, and have even made plans for what I would do if it happened, it’s really hit me hard. Harder than I  expected. I feel quite numbed by the experience. The last couple of days have been a daze. But one thing has been interesting.

Several people have said things along the lines of “well this must seem like nothing compared to what you’ve been through”. This assumption has surprised me. If you’re beaten up badly one week, does that make being beaten up slightly less badly the following week any easier to bear? No, of course not. Particularly if the bruises from the first beating haven’t healed. In this case, it makes the second beating considerably more painful than it would have been.

And that’s the thing isn’t it? People assume the bruises have healed. And nothing could be further from the truth. It surprised me, though I’m told that actually it’s common, but the emotional bruises didn’t really appear until I found out that treatment had been successful. In the thick of the fear and uncertainty I coped by focusing on the next milestone, the next point I had to get to. But when I reached the finish line there were no milestones left to take my attention. That’s when the full force of the horror of the last year really hit me. That’s when the grief at what I’d lost surfaced, the anger at the unfairness of it all, the shock of the terror.

I may be cured of cancer, but that is no where near the end of the story, and those that haven’t been there really struggle to get that. It’s assumed that a successful end to treatment is a moment of joy. But it isn’t. It’s the moment at which you have the space to start to feel. It’s the place where you can stop focusing on staying alive and have to turn and face the reality of what has been taken from your life. And it’s a time when you really really want the pain to stop and for life to just get back to normal. Being denied that is hard to take.