Wednesday, January 02, 2013

Sex and chemo: don’t try this at home

To echo a previous post, I write this with my wife’s consent and endorsement.

Apart from shit, another thing you’re not warned about in chemotherapy – I guess, chronic illness in general – is what will happen to your sex life.

Oh, yes. Before anyone gives me the smug and obvious: don’t bother. I’m not talking about what’s obvious, I’m talking about what’s acceptable to talk about. If you need to know the difference, you’re too jejune to understand why publishing a problem is important.

OK. The kids have left, the adults can talk. 

It’s bad enough that nobody warns you that chemotherapy can lead to an utterly catastrophic and unpredictable case of the shits. It is, perhaps, worse that doctors don’t say “we will save your life, but only if you’re ready to be celibate”.

Let me recap for people who haven’t read my previous posts on my wife’s health – Ms T to those who don’t know her, and those that know her don’t need her name.

She suffers from an extremely nasty and uncommon immune disorder. Since her T-cells have decided that blood vessels are The Enemy to Be Destroyed, the T-cells have to be suppressed. Otherwise, her arteries die. Major arteries that became useless prior to treatment included the celiac, one carotid, and one renal artery.

Unlike a cancer patient, for Ms T, chemo will be forever. If it ceases, she will die.

Now, let me present a timeline of 2012.

January: liver infection

February: replacement of celiac artery, involving a 14-inch belly incision, like a failed seppuku, matched on her left inside thigh (where the replacement blood vessel came from).

March: bone marrow failure with blood transplants in ICU

April: further surgery because the major scar wasn’t healing right (immune-suppressed, surprise me!)

May: What we thought was an infection emerged in an intimate spot. Later, this would be diagnosed as a tumour. Tumours are a risk of immune-suppression, because (obviously) there’s no response to abnormal cells. This month also involved the removal of a fast-growing facial skin cancer of the same origin.

Forget June to August: the intimate tumour was being treated as an infection, and sex was out of the question. A gynecologist finally diagnosed the growth, and surgery was scheduled for September.

September: removal of a vulval tumour. Write off this month and October for healing.

October: Post-op infection that gave us a second tumour scare.

November: All clear from everyone.

In other words: with very rare and sporadic – and occasionally drunken “fuck it, let’s try anyway” exceptions – the year 2012 from January to November offered almost no opportunities for intimacy.

It’s probably worth saying, at this point, that Ms T and I have, in our relationship, been lucky beyond any possible expectation. We met in 1987, and moved in together in the same year. We have argued, mortgaged, parented, starved, prospered, cared for my mother, raised our sons, and never lost the delicious tingle of touching each other, holding each other, the joy of a kiss or the electricity of a hand on a cheek, fingers on the arm, words we whisper when nobody else can hear. She can catch my breath in my throat, and our sons are a wonder and a joy (and, to be truthful, too damn loud and boisterous to tolerate!).

And for nearly a year, we were, perforce, celibate.

Since circumlocution is not my style, and since Ms T has okayed this: the bio-availability of a cyclophosphamide infusion is not 100 percent. Some of it is excreted: via the kidneys, sweat, tear ducts, and other fluids.

Which means that even some aspects of sex that we might both enjoy are denied us. As she said when we were discussing this post: “Oral sex is out. I don’t want to kill you.”

Is the picture forming? Good. There’s more.

In all of this a couple of other aspects arise.

The first is that a secondary treatment that Ms T suffers is high-dose steroids. These have a side-effect that skin and membranes are paper-thin.

Go on, fellas: any careless move during sex will bleed. Now, if you love your wife: try maintaining an erection after hearing the word “ouch”.

Really, it doesn’t work.

And the other problem is me. I’m an erotic wreck, brought down by worry and stress, business and mortgage, the fear of losing my wife and the fear of losing our life. I have nothing of a stiff teenager left to offer.

Whenever we can, we hold each other in the night, and wish for better. As do a million others going through this experience. We know you, and share your frustration. Nobody warned us, and quite probably, nobody warned you.


kass hall said...

It's hard to know what to say. In so many senses I understand ALL TOO WELL what you are feeling, the frustration, not just sexual, that comes with this life. All I can offer is: it's just plain shit.

In some ways, I don't understand it- sure, through my illness we've had about a million things we'd rather do than pretend to feel sexy, sexual, intimate.... you just kind of feel like you're faking it and you both know it, even though the person is the most beautiful thing you've ever seen and under normal circumstances you'd have to pry yourselves apart. But I also do have *some* appreciation of this.

I, for one, appreciate your brutal honesty, Richard. Sometimes the raw truth of things are hidden for fear of hurt feelings, over sensitivities or - worst - the too hard basket for those who can never understand. If only we could have the wider community genuinely appreciate the difficulties chronic illness presents us. As a positive person, I don't speak up enough about the realities of how illness affects my life, because I believe that for my own sanity I have to remain focussed on the good things. But your words ring so true. Know that, at least by me, your honesty and bravery in writing so is appreciated.

Anonymous said...

Richard, your words are so passionate and raw. You tell us things that we could never imagine, nor do we ever want to. I wish you, Ms T, and your boys all the best health and happiness. @leannekbailey

CoralieN said...

Thanks Richard for your raw honesty, it's hard not to love you and Ms T. What a delightful pair of human beings!