Wednesday, 5 October 2011

Sanitary confinement.

Like the big Austrian chap in those robot films, it's back. I knew it would be. It was merely a question of when. Sitting here after anti-inflammatories, dihydrocodeine and paracetamol, I am feeling distinctly befuddled. The period and right ovary pains are not easing enough, which is what I thought might happen. Only two days ago I was at hospital seeing my consultant, who said I looked well. I felt well. Well, not well, but not not well.

Last night, though, everything changed in the time it took me to place 8 plates, 5 cups and a selection of cutlery in the dishwasher. About 4 minutes 39 seconds. Ish. Sudden, tight, pinching, stitch-like burning in my right side, from the usual right ovary area up to my ribs. I've only had a pain like that once before in 2003 when I was admitted to hospital with a suspected appendicitis. After a horrible night of no sleep opposite a sweet old woman who couldn't stop being sick, I was told it wasn't appendix related. They didn't know what it was, they said. Not helpful to me, really. My belief is that it was a cyst or some kind of... ├╝ber-rupture. Something. I don't know, obviously, but from my first knowledge of endometriosis, it seemed obvious to me it was endometriosis-related.

So, there I stood, awkwardly, leaning on the worktop by the sink, swearing profusely when I could breathe, before cumbersomely shuffling toward the living room and my comfy sofa. It was a spectacular sight - slower than a tortoise in reverse. Once I'd managed to sit and press a cushion firmly on my increasingly tortuous and restrictive belly, the period pain started. Mildly. But it was there. I know that pain. Even at its weakest, I know that pain. Staying still was the only option. Breathing as shallowly as I could was the only way to breathe to keep the searing tautness being too intense. I'd had 2 30/500mg co-codamol tablets 90 minutes before all this, so, as you might imagine, I was a little bit annoyed that this was hurting so terribly.

The right ovary. The infernal, loathsome, right ovary. It gurgled and rumbled and squelched as it usually does, but more so. And then it eased and left just as quickly as it arrived, all of 10 minutes after Mum had put the ibuprofen in and held the cup of orange juice to my mouth. A hot water bottle, more cushions, the inevitable and unfightable drowsiness after the next lot of codeine-based tablets.

It was all a bit of a shock. I thought it'd be gentle. OK, not "gentle", but gradual, slowly building, a daily increase in pains over a few weeks. But it was all within a few minutes. Baffled. And still no bleeding. Just when you think you know how endometriosis will affect you, there it is, laughing at you from the inside where you can't see it, and it knows nothing else you do or try can help stop its cocky, sneaky, cruel invasion from within.

Although, that's not completely true. I have very few options left, now, as regards treatment. The next thing on the list of prescribed jollop to try is Depo Provera. The plan would be to still put my ovaries to sleep, but without the menopausal symptoms. Hooray! Side effects? Bleeding, nausea, mood changes, sleeping problems, slight increase in the risk of developing breast cancer, backache, dizziness, weight gai-... wait, what? What was that? "It is important to be aware that women using hormonal contraceptives appear to have a small increase in the risk of being diagnosed with breast cancer, compared with women who do not use these contraceptives."

Right. I knew this about contraceptive pills, which I've had before; I wasn't aware of it being the case with Depo Provera (of which I've heard before by talking to my endometriosis-affected friends) until I researched it some more. Slight increase. It's tiiiny! Probably. I'm young! It's fiiine!

But it isn't fine, is it?

My Mum had breast cancer and is still being treated for it. My auntie has had it and has not long finished a 7-year long course of treatment. There's a lot of cancer in the family. A lot of cancer deaths. A lot of them smoked. How can you work out who was more susceptible to cancer than the others, without the smoking factor? I don't know. But the facts are there. All this was apparent before I tried contraceptive pills but my Mum and my Auntie hadn't been diagnosed at that point.

For me, it's too much of a risk, however small. Sod's Law says if I have the Depo Provera, I'll be the 1 in 8 women just as Mum was 2-and-a-half years ago, I'll have encouraged the fuckers to grow from all this messing about with my hormones. But it's not my fault if it does happen, I know that. Many things change with a life or lives affected by cancer. If it did happen to me, I bet I would feel guilty. And feck knows what else. Endometriosis is bastard which is so hard to treat sometimes and, for me, it has to be treated, or at least managed with pain relief - if it isn't, my life is a pain-riddled hell.
Of course I am not suggesting it's on a par with cancer; what I know (among other things) about my endometriosis is that it hurts. It doesn't stop hurting even with the strongest drugs I'm allowed, and it scares me. And something which may help the pain, may stop the pain, stop the periods, give me back some kind of life might encourage breast cancer. In me. Perhaps because I try to not think about it, the risk has never felt tangible before now.

But it feels more real, more possible than ever, not least because of some utterly shitty happenings to one of the kindest, funniest, most thoughtful people I've known. I didn't know Lisa in 2008 when "it" all started. I began reading her blog just a few spooky weeks before my Mum was diagnosed with breast cancer in March 2009 and had, by then, acquired a bit of knowledge about the terms, the treatments, the procedures, the processes, the kinds of doctors Mum'd see. And now, Lisa and P and all those close to them are living in a new kind of incomprehensibility and anger and devastation. And she's my friend. And I'm angry about the unfairness of it, and upset about how ill she feels, and worried about her. I cried. I told Mum how frightened I am that the same will happen to her. And now, I'm (more) worried it might happen to me. Over the top? Probably. Is it? I don't know. Because you, reader, YOU THERE - you KNOW these things don't happen to those elusive other people. You KNOW shit happens, and it can happen to you because you are not invincible. Why would you help along that vicious disease by mistreating your precious body, the only one you can have? Why make things worse for yourself? WHY? You HAVE to look after yourself. PLEASE look after yourself.

So, what can I do? I just can't justify taking the risk of increasing a risk, not now, not that one. I know it's not as simple as "have Depo, get cancer", nor will it be easy (I suspect) to have the Depo and not think every day about what might be happening, what might be changing, and if there is anything happening, is it my fault for saying yes to the Depo and, therefore, yes to making it happen? I feel guilty already and I haven't done anything! Oh, for fuck's sake.

For the foreseeable, all I can think to do for the best, best for me and my family, is carry on with the painkillers and anti-inflammatories I have. I am NOT going to risk upping the chances if I can help it. So, shove it up your arse, cancer, you interloping incubus. Ooh, that reminds me - must ask my GP for some of that rectal Voltarol...




Monday, 3 October 2011

Poetry. Allegedly.

Damn you, endometriosis, and your devastation,
Your resistance to drugs and each second of your pain
Which haunts my days and takes my sleep,
Frightening memories ingrained
Of the times I prayed to a vacant God
To help me through the days
But nothing helped - not time, not words,
There are no other ways
To stop this agony hidden inside,
Which mocks and restricts, and ruins my dreams,
Oh, those countless times I’ve cried.