Discombobulated


  1. Deep breath

    I’m going to talk about what is wrong with me and what is going to be done about it in 2 weeks’ time. I will only do this once and then go back to baby goats and the like. This will be long and rambling and repetitive possibly. Probably. Definitely. There will be surgery descriptions and outpourings of feelings. There will be smudged words where my tears fall. I’m doing this mainly for me, because while I will be OK and I know that, I have to try and exorcise some of the pain and shock and anger and sadness that have been my constant companions since I was diagnosed a few weeks ago. And I can only do that in writing. I could keep it to myself but I don’t want to and besides, I have an Internet. And isn’t this what an Internet is for? That and photos of kittens in laundry baskets?

    So. I have breast cancer. I am young to have breast cancer. I have breast cancer because when I had Hodgkin’s lymphoma when I was 19 (cancer of the lymph system), I had, as well as extensive and hardcore chemo for 6 months, radiotherapy to my chest. This, apparently, is very, very bad news for teenage girls and raises the risk of breast cancer to around 60%.

    Sixty. Fucking. Percent.

    My tumour is on the left-hand side, high up. It is small, stage 1, which is good news because it has been caught early. It is hormone-dependent, which is also good news, because that is the type that is less aggressive than the mutated gene type (though not quite as cool sounding, more your middle-aged librarian type tumour than your Wolverine). These are good things. Usually for this they would simply remove the wee lump and zap the breast with radiotherapy to “sterilise” it and bish bash bosh, off home with a little scar and happy boobs.

    Unfortunately, there is no “usually” for me. Because I’ve had so much radiotherapy, they can’t do a small, quick operation.

    And now I’m crying again. I cry a lot of the time. I feel sad and scared and angry and I’m crying as I write this. I still can’t believe what has to happen to me, after everything I went through when I was younger, so I’m going to write it down and maybe when I see it in written words in front of me I’ll believe it. Maybe the black typed words will stick in my throat and dam up the tears. Maybe then I’ll be able to stop crying so much.

    I am having a full mastectomy of my left breast. I write that and feel sick. I can’t really describe what it feels like to know that will be taken away from me. I’m a writer, but I can’t describe it. So I’ll tell you about the operation. Concrete things, technical details are easier to describe than this writhing of black snakes in my heart.

    Other good things. I am having an immediate reconstruction during the same, 7-8 hour long, complicated operation so I’ll have a new breast made at the same time. My skin will be retained so everything on the outside will still be me. This means that after removing the breast (this is how I talk about it now, “the breast”, like it’s nothing to do with me, like it’s a thing, oh I hate this all so much) the plastic surgery team at East Grinstead (world-famous and pioneering, I am so lucky) will take muscle and fat from the inside of my right thigh, bung that inside my now empty skin and there we have it. New boob. I make it sound easy, but of course it’s a long and complex microsurgery op and it’s a long, painful and gruelling recovery. I could have had an implant, which would be much simpler, much less painful but much less me. So, no. Nope. No thanks. That would feel too wrong. I’m wanting all-natural, all-me, even if it’s part of me from a different part of me. If you see what I mean. I’ve seen the work these guys do and it’s pretty spectacular, so I know it’ll look great. I’ll be in hospital for a week, then recovering for 2 months. I will have scarring, which I don’t mind (scars are badass, aren’t they?).

    But. But but but.

    I feel sick to my stomach that such an important part of me will soon be gone. Part of my femininity, part of my identity as a woman, as a sensual animal, in a way that my hand or my foot is not. I will accept it, but right now I am grieving. And though I will soon look the same as I once did (almost, almost) I will no longer be able to feel anything there. That. That is the thing that kills me, that wakes me in the middle of the night sweating and gasping. For me, someone whose primary sense is touch, it is a little like dying. Like a part of me is dying. If I can’t feel with even a small part of me how is it that I am still me? I don’t really know how to explain it. But it hurts me, deep inside, in ways I never knew were possible. I have to let myself feel it, feel it all, and I do and I rage and I cry and I feel a little better and I carry on and then I rage and cry some more.

    I feel a desperate need to be held and touched, all the time, to have physical contact. Being touched is the only thing that makes me feel calmer, happy, even just a hand on my arm. I have no real need for words and talk less than I used to. I don’t know why. Someone in Italy told me that I reminded them of a deer. And it’s weird but that is how I feel right now: flighty and tender, quiet, more vulnerable than I’ve ever felt before.

    I am young. I will get through this. Strangely, the experience has made me appreciate my body in ways I never have before. I look at myself in the mirror and rather than thinking Ugh, look at that bulge or Why can’t I have longer legs? I look and think But wow I am beautiful. And I feel beautiful, like I never really have before. Weird, isn’t it? Now that the only part of me that I have always loved unequivocally, always felt was perfect, is about to be mutilated, I now find myself to be beautiful all over. And I look at myself a lot now. I look at myself, standing naked in the dim light and I smile and cry and feel happy and sad and surprised and angry and grateful and think My god, all those people who said I was beautiful, they were right and I never believed them. Because I never did. Not really. But I do now. And so I will take photographs to remember me by. I may never look at them but they will be there for me, pictures of my beautiful shadow, if I need them.

    I have so much more to write but wow, this is long already and I feel so tired. If you’ve got this far thank you for reading. I am busy making preparations and seeing people before I go into hospital. I will get through this and everything will be OK and I will be able to use my body as I always have and it will feel mine again. I do know that, absolutely. But right now those rational thoughts don’t help much. Right now I just need to feel my rage and sorrow a while longer. I just. Oh. I can’t stop crying.