10 years of remission.

July 30, 2018 — 5 Comments


I imagine death so much it feels more like a memory

When’s it gonna get me?

In my sleep, seven feet ahead of me?

If I see it comin’, do I run or do I let it be?

Is it like a beat without a melody?

See, I never thought I’d live past twenty

Today marks a decade of being in remission from cancer for me. It is the tenth anniversary of my second stem cell transplant, the date that I received the cells that finished the process of obliterating the leukaemia. Only 26% of AML patients reach five years of remission, so considering I have doubled that, I should be celebrating, right? People think that being in remission means that you are fine, that it means the ordeal is over. I am not fine. I am so far from fine. I am physically and mentally broken. And, in the past six months, I have become totally preoccupied by the notion of my death.

I suspect my body’s reaction to the transplant and everything that happened afterwards probably means that my cancer is incredibly unlikely to return, but that is not what I am worried about. The lung disease that I developed in early 2009 has been steadily reducing my lung function since then, leaving me with just 23% after I became ill with pneumonia last year, and my right lung collapsed. Every activity required time afterwards to catch my breath, and by activity, I mean putting on an item of clothing. I mean brushing my teeth while sitting down. I mean rolling over in bed. It was terrifying, and the only thing that got me through each day was knowing that I would get better. I spent every hour waiting for night because I was a day closer to improvement. I am never allowed to have a general anaesthetic ever again because my lungs would not be able to support me afterwards. I am one accident or infection away from grave danger.

Struggling to breathe in the dark is like being buried alive.

Being legitimately breathless is petrifying. I don’t mean the out of breath feeling you get when you’ve just legged it for the train and leapt on as the doors are closing. True breathlessness feels like you are suffocating. It feels like you will never breathe normally again. It is the mental fight between the two halves of your brain; one wanting to panic and hyperventilate, and the other having to force those thoughts back down because that will make it exponentially worse. It’s climbing the stairs, knowing there is an oxygen cylinder at the top, attaching the specs to your face, having four litres per minute stream into your lungs, yet not being able to close your eyes to concentrate because struggling to breathe in the dark is like being buried alive.

And I’m so afraid. I’m afraid of the point in the future where I’m trapped in a body that won’t cooperate with my mind. It still refuses to resign itself to the facts of how little I can do. In my dreams I can still dance. In reality I can’t get through a verse of a song. My brain doesn’t want to recognise that, the way Nigel Lawson doesn’t want to acknowledge climate change. Welcome to Denialtown. Population: Me.

I have felt like a burden before.

I am not afraid of the act of dying itself. I don’t want to die in a hospital but I think I probably will. I anticipate that if it is some strain of infection, as is most likely, then I will fade away, somehow, and the machines will stop beeping because my heart has stopped beating. Maybe that is just a romantic notion and it’ll actually be violent and distressing but even so, it’ll be over, and I’ll be gone. No, what I am scared of is what will go on around me, before and after. In the before, if I become terminal, and we have to live with the weight of that sadness…I don’t know how to be the person that gets lost. When people I love have died, when I knew they were going to die, having to leave their side knowing I would never see them again felt like tearing off a limb. How do I be the person that is said goodbye to? Perhaps it is telling that for all my talk of being realistic and practical, I still haven’t planned my funeral.

Because that is the after. At least prior to my death I can still hold my mother’s hand to try and comfort her. Afterwards I’m just a memory. A ghost haunting everything I leave behind. A sudden reminder in something they know I would have loved and the searing pain in the remembrance I will never experience it. I know that grief isn’t linear, that it follows you around and blindsides you at two o’clock on a Wednesday afternoon. It punches you in the gut. And I am scared of the overwhelming guilt that comes as the free gift with the awareness of your impending death. The sense, however illogical, that I will be the cause of such anguish, and the sheer powerlessness of the lack of ability to change that. I have felt like a burden before and the gravity of my depression rendered me barely able to speak. I don’t want to go back to that place.

Nothing in this world that’s worth having comes easy.

Most of all, I’m scared it will come before I am ready. The dangerous thing about staying alive all this time is that it has tricked my mind into believing that I’ll just keep going. Because of that, I keep making plans, putting things off, living the only way I know how now. And I really love it. I am so lucky. I have the most phenomenal family, who support and take care of me no matter what. My friends are kind, smart, magnificent human beings who treat me like a normal person, and it gives me so much pleasure to watch them achieve such great things. I love the comedy gang, catching up before shows, seeing their new work, cheering them on as they make waves. I love the cat fostering, being able to nurture them into happy animals that go to homes that will love them for years, and the friends I’ve made through doing it. I get a huge amount of satisfaction from crocheting all the things, because I can make anything from scratch and share them with people, and hopefully they’re lasting tokens of me. Finally, I love it when I am able to use what has happened to me to make changes for people like me in the future. Whenever Anthony Nolan ask me to speak, or I get to talk to the press, or somebody new tells me they’ve signed up to be a stem cell or organ donor because of me, that is everything, because that is potentially a life saved. And I want to stay here with these people, doing all these things and more. I’m never going to be finished. I’m never going to be ready. I’m really sorry for all the loose ends I’ll inevitably leave behind. You know how I hate an ambiguous ending.

But I can’t help feeling like my expiration date gets nearer with every year that I keep defying the odds. It’s coming, and when it does, I want to know I meant something. If I leave anything behind, let it be the way to stop this happening again. Keep recruiting new donors, keep telling people about my case, keep believing that things can change. Find a way to fix lungs without the need for a transplant. Save someone else from pain. It won’t be easy, but in the words of Dr. Bob Kelso, nothing in this world that’s worth having comes easy. It hasn’t been for the past ten years, but the good parts have made it so worth it. So when the inevitable does come, and the choice is between the easy thing and the right one, know that you have the strength to do the latter. I have been told a million times of my resilience. As long as you keep me alive in your heart, you’ll have it too.

5 responses to 10 years of remission.

  1. 

    I’ve not read your blog in a while but obviously follow you on social media and check you’re still hanging in here. It’s four years since you and your mum brought me coffee and sat with me in that dark hospital room with Oliver. I think that’s when you still had your butterfly bruise and you were in a wheelchair and needed help to stand. And I remember thinking how far you’d come but knowing it wasn’t forever, and whilst holding my son who I probably didn’t quite realise would be gone before you. I can relate to the notion that people think you’re fixed as so many people said the same after Oliver had his transplant when actually we probably made him suffer even more. You are such a phenomenally brave lady. xxx

  2. 

    ❤️

  3. 

    Lots of love. You are so honest and truthful. That is one of the things I admire most about you. X

  4. 
    Caroline Byard July 30, 2018 at 10:17 pm

    You are one amazing lady. You have once again defied the odds and have come through another twelve months. 10 years is a great achievement, but like you said, it doesn’t come without its ‘side effects’. 10 years remission, but what does that bring with it? Heart scans, lung function tests and blood tests. Then to add insult to injury, there’s all the other side effects post chemo and radiotherapy, that list really does go on!

    But you, Kathryn, you have done another year. I’m so proud of you, your fight and determination.

    Myself, James and Joshua send all our love. ❤️❤️❤️X

  5. 

    Kathryn, we’ve not met — though nearly did at the House of Commons recently; I wish I had managed to find a moment to say hello (I didn’t realise you were you until afterwards).

    These words are so powerful, heartbreaking and yet — and I do not use the word in the casual way so many do — inspiring. By sharing the extent of your challenges, the devastation of your fears and the vital need for lasting good to come out of this all, you’re doing more to raise awareness of the consequences of transplant than anything I’ve read or seen anywhere else. And as you say, every single individual who signs up to the register because of you is a potential life saved.

    I feel lucky in terms of the side-effects I’ve had as a result of my transplant, but I realise that too often I downplay the issues I do have, not least to play up to people’s expectations that I am ‘better’. This post has encouraged; no: inspired me to be more honest in the very real difficulties of life post-transplant.

    I have the enormous privilege and opportunity to help make actual, positive change to what post-transplant care looks like, as a patient rep on Anthony Nolan’s Expert Steering Group. My Your post and another by Simon Bostic, combined with my experience on the steering group, make it even more clear to me that the potential lifelong, life-changing consequences of transplant are still far from being recognised. I will shout even more loudly!

    Your fears and concerns are so understandable — and the fact you express them so eloquently and passionately will already show the people you love how much you care, which I like to think will always be an enormous source of strength, whatever happens. But I don’t think there’s any reason to stop making plans, putting things off, etc. While we are alive, all we can do is live — and to me giving myself something to look forward to (even if I don’t make it in the end) will always beat winding it all down to focus on not living.

    I was deeply moved by your article, and wish you all the very, very best. I hope our paths cross again soon and that I get to meet you.

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