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Wednesday 25 March 2015

One in a billion. Or thereabouts...


So, for those of you who are my friends on Facebook, you’ll know that I had my 3 month scan last week and everything came back looking positive. My heart’s still beating, my bones are still mending and the lesions in my liver look like they’re miraculously getting a bit smaller. Which is weird, cos the Herceptin and Pertuzumab are supposed to control rather than kill, but who am I to argue with the facts? Anyway, the post I put up was to the effect of: Boom! 3 month scan and the bugger’s being kept at bay! Boom!

Now then. If I’m being completely honest (and that, after all, is the point of all this)… that post wasn’t strictly true.

In November last year I noticed a bit of a rash on my chest. A week before my jaunt Down Under. Bit annoying, I thought. Not very nice to look at, I thought. Maybe it’s cancer, I thought (in a tiny voice in the back of my mind).

So I did the grown up thing. I popped into the clinic to see the oncology registrar and check it was nothing to worry about. She had a look and said no, that looks OK. Maybe an allergic reaction to something? Maybe the sun would actually clear it up? Let’s suck it and see eh? But it didn’t look like breast cancer would look like in the skin.

And so, off I set on my merry way for the very best of holidays ever and had a lovely time. The rash enjoyed itself too. So much so that it got a bit redder, and developed more of a definite shape – a very defined triangle from collar bone to sternum and back half way up the boob that’s still there.
Getting back home, I was due for my 3 month check up, so I thought I should bring up the rash with my oncologist. Hmmm, she said. Odd, she said. It doesn’t look like cancer. Or at least not like any she’d seen. So we called in one of the surgeons. Hmmm, he said. Odd, he said. It doesn’t look like cancer. And so we called in the dermatologist. Hmmm, he said. It looks like a photo-sensitive delayed allergic reaction to the chemo, he said. So he gave me steroid cream and I diligently applied it for 3 weeks over Christmas and the rash didn’t go anywhere. In fact, if anything, it got a bit redder, and a bit more triangular. Although it very definitely didn’t stray from that shape. It was just plain odd.

So I went back to see the dermatologist, and he thought it was probably worth doing a biopsy. Just to rule out it being the cancer spreading. Just to be sure. After all, no-one at the hospital had seen this manifestation before, and it would be very, very rare if it was cancer. And it didn’t look like cancer. Let’s remember that. So I should probably not worry.

So we did the biopsy and my sliver of skin went off to the lab.

(I think we all know where this is going don’t we?).

Two weeks later, and I’m back in his office. As thought (not as I’d thought, but anyway…), it was the very, very, very rare thing. And you know in the adverts when everything stops and someone’s sitting in a room hunched in a chair looking at the person who’s talking like they’re a blethering idiot? That happened. I couldn’t think of any questions, I didn’t really know what to say. I didn’t want to cry in front of him (mainly cos I thought he was quite a nice looking chap and I think there’s some sort of ethics business in place which means I’m not allowed to think that). So I just sat there and stared at him like a slack-jawed fool and tried not to cry.

What I do remember though, is him elaborating on the rarity of this whole thing. Something so rare that he could only find two other incidences of this triangular rash manifestation in literature IN THE WORLD. Two. In the WHOLE WORLD. Which, with me thrown in for good measure makes me 1 in 3 billion or something ludicrous. I mean, I know I’m special and everything, but that’s just ridiculous. I’ve since looked it up on the internet and found these other two incidences, who seem to be blokes in their fifties and sixties with salivary gland cancer. Which makes ME even MORE special. Or weird.

Very importantly though, and he was at great pains to stress, I had to go and get photos taken so they could write me up and I could join the two gentlemen in the medical literature. Me! Published in a medical journal! What larks.

Anyway, off I went to Dr S to see what on earth we were going to do about this. Because after all she hadn’t really seen it before either. But before seeing me she’d researched it and spoken to the Royal Free about this fancy treatment called electro-chemo. She didn’t really know what it involved, just that it could potentially work for me. And she didn’t want to stop the other treatment I’m on because my liver, bones and lung are happily playing ball on that front. So she referred me over to the Royal Free and off I went to see what it was all about.

Next stop the consultant oncologist at the Royal Free, who explained everything to me. It’s quite a new treatment, but I think they’ve actually treated 8 other people with it, so I’m not quite as much of a medical marvel as I thought. But still, I seem to be the only one with this triangular shape, so I’m clinging on to that as an oddity… And 8 people just knocks me down to 1 in a billion or something instead. Anyway, in a nutshell, they knock me out under general, give me a low dose of chemo and then use loads of tiny needles to administer an electrical pulse that causes the cells walls to open and chemo to flood in and kill them, meaning the individual cells get a much higher dose than they would ordinarily. It’s SO clever!

Then on to a meeting with the surgeon who’s going to perform this magic. He’s a genius. And a lovely man. And I think that’s pretty much all I have to say about him. An actual genius.

So all this brings me to yesterday – lying on a trolley thinking once again that I’m going to be the one person that anaesthetic won’t work on, before 10, 9, 8, zzzzzzzzzzzz…………

“Do you know where you are?”

“Have they done it yet?”.

Every time. Why am I always so surprised to wake up from a general to find they’ve actually done what they were planning?

Quick visit in recovery from the surgeon who very proudly told me that he’d administered 429 needles in 30 minutes – something of a record it seems! Which, if he did one at a time is a needle every 4.2 seconds (something I was sooooo bothered about working out in my head when I was coming round from the general. So weird.). But surely he can’t have been that quick… Even if he did 4 needles at once that’s 1 stab every 16.8 seconds. Which is still pretty bloody quick. But he IS a genius though, so I’m prepared to believe anything…

And finally to this morning, when I very much felt like I’d been stabbed with 429 needles, regardless of how quickly or how magically he did it. It’s achey and burny and tight and tender. It’s OK if I sit in one position, but it hurts like hell if I sit in another. Going from sitting to standing is horrendous, and I’m going to have to sleep propped up like an old lady. But d’you know what? It’s that or cancer innit? And this morning felt better than last night. And this evening feels better than this morning. And I can only imagine tomorrow will feel better than today. So you just get on with it don’t you?

1 comment:

  1. I read your Guest Blog on the Macmillan forum first and that was great so I clicked on the link to your own blog and this is, too. Cancer is a "rubbish job", but the training courses are good, ain't they? I've learned loads.

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