Discombobulated


  1. Mum can’t enjoy much these days. She’s been in hospital for 3 weeks with a chest infection but of course the chest infection is the least of her worries. She cannot talk anymore and it’s hard to know how much she understands. Sometimes she will try and open her mouth to say something, furrow her brow, close her eyes and shake her head, unable to find the words for anything. Can you imagine being locked in to your body, your head, like that? The thought horrifies and saddens me beyond words. She and me both, I guess. Jesus but these terminal brain cancers are a motherfucker. I’m hoping to bring her home next week and will need carers and nurses all day, every day to help keep her safe and comfortable for however long she has left. The few things she still responds to - with a slight raise of the eyebrows and an adorable little happy noise that sounds part whining puppy and part purr - is her beloved flowers and plants, clouds passing in the sky, my smile. Whenever I visit I make sure to take a few photographs of her roses and camellias, which are now stretching out into Springtime. This is the first blooming camellia in mum’s garden. I’m going to show it to her today when I see her and hope for a raised eyebrow and a little purr. These little joys, these tiny rays of light mean the world to us now and are all we have left but my, they make us feel happy.

    Mum can’t enjoy much these days. She’s been in hospital for 3 weeks with a chest infection but of course the chest infection is the least of her worries. She cannot talk anymore and it’s hard to know how much she understands. Sometimes she will try and open her mouth to say something, furrow her brow, close her eyes and shake her head, unable to find the words for anything. Can you imagine being locked in to your body, your head, like that? The thought horrifies and saddens me beyond words. She and me both, I guess. Jesus but these terminal brain cancers are a motherfucker. I’m hoping to bring her home next week and will need carers and nurses all day, every day to help keep her safe and comfortable for however long she has left. The few things she still responds to - with a slight raise of the eyebrows and an adorable little happy noise that sounds part whining puppy and part purr - is her beloved flowers and plants, clouds passing in the sky, my smile. Whenever I visit I make sure to take a few photographs of her roses and camellias, which are now stretching out into Springtime. This is the first blooming camellia in mum’s garden. I’m going to show it to her today when I see her and hope for a raised eyebrow and a little purr. These little joys, these tiny rays of light mean the world to us now and are all we have left but my, they make us feel happy.

  2. Camelia Milk

    My mother is dying.

    That is a true thing. I write it because it is a true thing and because I want to see how it feels to write it.

    I don’t know how I feel when I write it because I turn away from the feelings. They are too much. They threaten to drown me, so I turn away and pretend they are not there. Here. In my heart. Soon I will face them, but not today.

    Some other true things:

    My little leopard sister, Julia, and I spend our lives shuttling back and forth between our homes and South London to be with mum, to ensure she takes her medication, to make sure she washes, to make sure she eats. Mum lost interest in food months ago. She is OKish one moment, vacant and staring the next. These vacant, super-confused episodes are, we were told a few days ago, seizures. She is now on anti-seizure medication to go with all the rest. Her tumour is growing rapidly.

    We are exhausted and sad and lost and try to snatch hours, a couple of days, of our own lives back when we are home. It’s not easy. I drink too much and smoke too many skinny roll-ups, and that’s just the way it is. It’s OK.

    Mum is no longer being treated by the hospital and her care has transferred to the hospice home care team. These people are amazing, wonderful people, but it brings it home to us. She is dying, and quickly too.

    The colours white and blue distress her now.

    Some strange things cause us little flashes of sad joy now: mum was trying to write a shopping list. She wanted chamomile tea and went to write it down. She gave the shopping list to my sister, who read on it the one item: Camelia Milk.

    Camelia Milk.

    Julia and I both think Camelia Milk sounds rather lovely.

    If such a thing existed, I imagine Camelia Milk would come in an old-fashioned milk bottle, the type that used to get left outside your dorrstep in the morning by a little humming, electric milk float. The Camelia Milk bottle would be slightly frosted, have a cork stopper and a simple camelia flower burned into the cork’s top. If there were such a thing in the shops I’d buy it and give it to mum and maybe that would make her happy, for a while.

    Camelia Milk. The thought makes me smile.

  3. Moja draga mama. My dear mum. Look at all the fucks she gives about that brain tumour. Drinking posh tea and showing our lovely Americans what Englishing is all about (tea; it’s all about the tea). Volim te, mama ❤️

    Moja draga mama. My dear mum. Look at all the fucks she gives about that brain tumour. Drinking posh tea and showing our lovely Americans what Englishing is all about (tea; it’s all about the tea). Volim te, mama ❤️

  4. Fuck cancer. Again. And again. And again.

    I’ll keep this brief because I’m shattered.

    My mum had breast cancer year before last, and surgery. You may remember that.

    I had breast cancer last year, and surgery. You’ll likely remember that.

    And now we have this devastating bullshit.

    After two weeks of increasingly odd behaviour, losing words, becoming ever more confused and forgetful, mum was diagnosed on Wednesday with a massive brain tumour in the frontal lobe.

    She had been deteriorating very quickly, to the point she was unable to care for herself, so for the last week I’ve been with her. Potent steroids have reduced the swelling in her brain and her crazy cognitive and behavioural symptoms have lessened considerably so she’s able to function, but heartbreakingly also able to understand what’s happening to her. She keeps apologising to me. I feel so sad and scared and angry.

    I’m taking her to hospital this afternoon for neurosurgery tomorrow. In the meantime I’m distracting my self with college work, reading comics.

    I have no idea about prognosis, but this is some serious shit.

    Fuck this year. Fuck cancer.

  5. (o)(o)

    It’s not fair.

    Others get broken legs or arms mauled by albino tigers or Ebola virus or Zigzag Throat (if you’re a dragon, and yes you need to brush up on your Terry Pratchett references). In Australia, apparently, it’s traditional to try to put out fires with one’s hands. But that’s Australians for you. For all of these you get to see their painful, gruesomely fascinating progress in photos here. Day by day, gradually healing skin and magical surgical contraptions and returning flexion in knees. You get to see it all.

    But me? You know my story. I’ve told you and shown you how I’ve felt about it. I’ve had a seriously holy shit hardcore time in hospital (out tomorrow, whee!) but I have had a masterpiece of surgery - A FUCKING MASTERPIECE. In two months you won’t be able to see one scar or tell that one of my bosoms has ever been within a yard of a scalpel. Seriously, it’s like magic. The thigh has a kind of rakish James Bond villain scar thing going on, so it’s pretty great too. I’m hobbling and in pain still and I will be for weeks but its all good. I feel so relieved and happy. And thank you so much everyone for all the support and emails and stories and messages. I will get round to answering y’all in the end. I love you.

    But I can’t show you my wonderful stuff on the Internet like other folks can. I mean, I could. The Internet was practically invented for the sharing of pictures of breasts, amirite? But not mine.

    So I won’t.

    (but they’re so beautiful and perfectly matching)

    I can’t.

    (really, really beautiful)

    I won’t.

    (as beautiful as they’ve ever been, and it could be all black and white and tasteful-like)

    So I won’t.

    OR WILL I?

  6. 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.

  7. I am a giant

    I found out today during my 4-hour long pre-op assessment palaver at the hospital that I’m actually 5’ 5” tall NOT 5’ 4” as I’ve always thought. I’m guessing I just stood up straight for the first time in my life.

    THIS MAY BE THE BEST DAY OF MY LIFE FOR I CAN NO LONGER BE CALLED A SHORT-ARSE.

  8. On the bravery of swallows and the goodness of home cooking and that damn illness that needs to go eff itself

    Soon the swallows will be gone.

    September is the month they up and leave for African shores. Calling to each other high and far from soft, red throats they gather in the skies and leave this island. A few stragglers will stay until early October, but most will have left by then. They go journeying far away but always come home, are persistent and beautiful and brave and so I love them, as one must love a thing that is beautiful and brave and does not give up. And that is the why of my swallow tattoo.

    Do you know Oscar Wilde’s heartbreaking story The Happy Prince? About a swallow and a statue and how they help the suffering people of their city. It is a tale that is beautiful and tragic and deeply moral (God appears at the end but don’t let that put you off if, like me, you are a non-Goddish kind of a person). It is about sacrifice and love, that is all. I will never forget the time my mum read it to me in bed when I was eight. She had just left my dad and his psychosis and taken us, her three young kids, with her to live in a tiny flat. Sitting in the dim light on the edge of my bed she read the story quietly to me. Her voice got fainter and fainter until, about two-thirds of the way through, she burst into tears and closed the book. She caught herself quickly and sat silent for a moment with her hand over her mouth and her long blonde hair over her face, then kissed my forehead and left. I lay in the dark and wiped my wet brow, listened to her crying in the living room. I wanted to go to her and put my arms around her and tell her, Mama, don’t cry, I love you, it will be alright. But I didn’t. So many years have passed and I still feel bad about that.

    I may have told you that story before.

    Mum was diagnosed with advanced breast cancer two weeks ago. She broke the news to me, in her usual matter of fact way, over the phone. Both she and I have had cancer, and have both beaten it right back to hell too, but when she told me I felt sick, as tiny and helpless as a baby bird. Next week she is having a mastectomy and I will be taking time off work to look after her if she is allowed out of hospital. If she stays in I will stay at her house, wander the little rooms, unearth old childhood stuff, do some pottering around London, write. Wherever she is I will read to her. I will write something for her, on paper. I will make her laugh. I will cook for her. She eats hardly anything at the moment but she loves to see me eat and I love to cook, so I will cook lots and eat lots. I will bake us a Tarte Tatin and dammit if I don’t get her to have a whole slice (if you’ve never tried it, you really should).

    These little things of love, a home-cooked meal, a few handwritten words, a gentle touch, can make a difference, I think, sometimes. I hope.

    "Justine, I’m perfectly capable. It’ll be fine. Don’t fuss so”, she tells me. I half expect her to go all Monty Python’s Black Knight on me: “Tis but a scratch!” She is a stout-hearted Eastern European socialist who built roads in her native Yugoslavia as a child and prefers to deal with things herself: slaughtering pigs, beating cancer, overthrowing capitalism, that sort of thing. I try not to pester her too much with my concern, for it seems to upset her more than the illness does. But this time I will not let her do it all on her own. This time I will go to her. Though I feel scared and oh so small, I am strong and this time I will go to her and put my arms around her and make sure she is OK.

    The swallows will be back next year. And you know what? I am hopeful that my mother will still be here to see them return and that maybe I will be in Africa to wave them goodbye as they leave on their return journey to the UK in the Spring. I’ll stop and watch them and say to my small herd of goats (for I will have some goats by then, oh yes, and maybe a kitten, I would like a kitten), “Look! There they go!” The goats will shake their heads and wonder what I’m on about. They’ve seen it every year, it ain’t nothing special to a goat. I will call to the birds and ask them to say hello to my mother when they arrive. “Tell her I love her. Tell her I will be home soon. Don’t forget!”, and the swallows will rise into the African sky and start their long, perilous journey back to this land.

    Bon voyage, little birds. Be safe. Come home to me soon.

  9. GPOYW Sniffy Says Fuck Cancer edition
For Marley’s poster for Bob.

    GPOYW Sniffy Says Fuck Cancer edition

    For Marley’s poster for Bob.