Archives For death

The 30th of July.

I’ve had really quite a shit day. My arm has decreased in size which is obviously good, but it means I need to be remeasured for a new sleeve because the current one is almost baggy. I spent all morning trying to ring the people who book the appointments for Julie at The Spire and left a message, but no one answered or got back to me. I rang the main number who bounced me from pillar to post before putting me through to the number that no one was picking up. It was only at lunch time when I tried the main number again (after another no answer) and voiced my frustration did I get to speak to someone. They said they’d been there all morning which just tells me they couldn’t be arsed to talk to me or any patient that called. I finally got an appointment for next week. Hopefully I’m not adversely affected.

Another reason for the shitness of the day was that I put up a post this morning about how I feel about having been in remission for ten years, which I’ve been working on for weeks and was really hard, but the overwhelming lack of reaction makes me feel like very few people really give a fuck. I have had a couple of comments but really I don’t know why I bothered.

Finally, I got a letter from the pain nurse who I talked to on the phone six weeks ago. Turns out the reason I’ve heard nothing is because she only just wrote to Dr. Blaney. Great.

Happy 10th Marrowversary. Again.

The 31st of July.

I feel better today. I got some responses which cheered me up and made me think a bit differently. Plus I went out and had a nice time which perked me up.

Didn’t have time to do much this morning belt going out to meet Sadie at 12. Daddy dropped me off, then went to work to pack up some more of his stuff. I got a text as I was going up in the lift, and it was Sadie telling me that the place we were going to eat wasn’t open yet. Boo. We had a look at what was available instead and settled on Giraffe. Sadie had some spicy rice thing, and I ordered tapas of bao buns, patatas bravas and chorizo. The chorizo ended up being too hot for me so Sadie ate that, but my buns were delicious and the potatoes were fine. Then we shared some churros. Yum. Talked about Love Island, her current/future job, our shared desire to and see The Meg, and stupid people in our lives.

When we finished, she was going the other way to me, so we said goodbye, then I went to Foyles to browse and ended up buying Hunger by Roxane Gay. I then texted Daddy come and pick me up, but traffic meant it took him 25 minutes to get about a mile. Bleah.

Since getting home, I’ve watched the most recent Sharp Objects and the pilot episode of House while crocheting the dress.

I nearly got Dolly on the chair with me last night! Two paws up, thought about it, but no. Soon!

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.

The 10th of June.

Today has sucked.

I didn’t think I had a particularly bad night, but I must have, because I have been struggling to keep my eyes open all afternoon. However, my body didn’t seem to deem it bad enough to be able to have a nap, so a second coffee at 4pm was my only way to stay awake.

It started off badly because I found out that another one of my friends has died. A guy called Ash from my TCT group, one of the few people in there that I actually liked, relapsed a few months ago. He’d been really positive about his prognosis but evidently that wasn’t enough. And I can’t stop thinking about death.

That put a dark cloud over the whole day, and I wanted to kind of retreat from the world, so I crocheted. Just going back and forth doing the collar of the cardigan, and it takes twenty minutes to do a row. Given that there are 24 rows of the collar, it’s kept me busy all day, with the tennis burbling in the background. I’ve got eight rows left, so that’s nearly three hours of work remaining.

Dolly is still sad, and now she’s getting angsty with me when I stroke her. I’ve never had to deal with this before.

The 11th of June.

I was fully aware of having a terrible night because it was so warm, but today I have not been exhausted, which of course makes perfect sense.

Woke up to find a note under my door saying Mommy was over the road, but to text her when I got up so she’d know when to come back for us to go into town. She had left my breakfast prepared because she is an angel, so I didn’t have to do too much standing and cause myself pain. She returned as I was finishing my coffee, and we went shopping for Daddy’s birthday presents and other errands. I got him some fudge and a nanoblocks astronaut, then I needed some more body butter and hand cream. I had already got him a card, at least.

Home, and after lunch, it was time to power through the last few rows of the collar. I have just been doing that solidly all afternoon while catching up on Humans, and I am pleased to say I have finished! I have weaved in all the ends, so now I have to attach the sleeves. I really hope they’re long enough.

The 4th of June.

Well, today has been pretty garbage. I had thought I would go to the gym, but I woke up and my back was immediately terrible. Literally, I got out of bed and there was pain. So I wrote up a blog post, but photos aren’t syncing between phone and iPad, and I left that. Hoping I’m not going to have another iCloud saga. Moved on to my crochet and I’ve discovered that having finished the collar, it looks weird, and I subsequently found it is the wrong size! So I have sat for the whole morning, unravelling the entire thing and spooling it into neat balls of wool. And Mommy scraped the side of the car swinging it into the drive because idiots made it extra difficult today. So it’s been bad!

This afternoon, I started the cardigan again multiple times, so it now ought to end up being the right size. Bit of tennis, bit of crochet, then I sat with the sleepy cats and watched Bates Motel. They at least got something right with the CF girl today because she jumped in some water without her oxygen which I knew would be bad and her reaction was appropriate. For once.

The 5th of June.

I suppose today has been an improvement, in that it was not dreadful. Slightly less pain, so I went to the gym.

What happened this morning? Not a huge amount. I stayed in my pyjamas to begin with, because I wasn’t sure what activity I might be doing, dependent upon my back. After coffee, and putting up the blog post from yesterday, I went upstairs to get dressed in my gym clothes and listen to a Friends with Friends. Back downstairs, I returned to crocheting the cardigan until lunch.

Obviously, the afternoon was spent at the gym. I had a reasonable time, nothing excessively difficult. I found myself getting emotional while listening to the Hamilton soundtrack and thinking about death (specifically, mine) so had to stop myself from crying during my tricep dips. Then later, I was recovering on the leg curl and I think the staff have had a meeting about me because I looked up and there was a woman there asking if I was alright. Believe me, if I’m having a problem, you’ll know. I also had to make a child move because he was just sitting on the last machine I wanted and passive-aggressive staring wasn’t working. So I was polite but pissed off in my tone and he moved. Victory.

 

The 1st of May.

It’s our last day with Little Pidge! Shaki rang this morning to discuss arrangements for her, because she’s off to Exeter tomorrow. Shaki will be here about quarter past eight in the morning, so I’ll say my goodbyes tonight. I’ve written up some bullet points about her but it’s very basic. She’s a good kitty, I’m sure once her wound clears up she’ll be homed really quickly because she is lovely.

This morning, I wrote up a blog post, we cleaned Little Pidge’s wound, then I wrote the little bios of the dogs I’m taking to Mach on luggage tags. I also managed to help out a girl who’s going and was looking for tickets for some shows, two of which I could assist with. We’re going to go to a couple of shows together, so I’ve done a good deed and made a new pal!

After lunch, we popped to Tesco to get some instant coffee for Wales. Last year I had none and was sleepy until I got into the town every day. I bought mochas because they’ll be slightly less awful than the lattes. It’s a last resort.

Then, I sat with the cat and we watched Scandal some more. Tomorrow I won’t have my companion!

The 2nd of May.

My back is dreadful this evening and that does not bode well for this weekend. Two very long journeys (well, three-ish hours) are bad, just sitting in the car. Today all I’ve done is sit in the living room. I think I’m just going to have to drink enough to not notice the pain.

The weather has been horrific for most of the day, and I had a book being delivered (new Joona Linna eeeeee), so I decided not to go to the gym. Instead, I put together the present I’ve made for Esmée, then tried to come up with a way to occupy myself for the rest of the day.

We’d just started to eat lunch when I looked at my phone, and found out that John Underwood died two weeks ago. I am stunned. I have known him for a few years, since before his transplant, and we talked a lot about GvHD and how it is to live in hospital. He’d had his ups and downs, but he had seemed to be improving. It was slow, but he was taking steps, both literally and figuratively. I don’t suppose I will ever know what happened and that is difficult. I suppose I’m just in shock. I did not see this coming.

Since my appointment yesterday with Dr. Thompson, I’ve been feeling pretty depressed. I know that physically, since the pneumonia and collapsed lung, I have found it hard to do much more than walk a few metres without struggling for breath, but to now have it confirmed that there is no hope of recovery is hard to hear. I had just got used to one standard of disabled life, and now I have try to envision the rest of my life again in this new version. I am tired of grieving for lives I thought I’d have.

It’s difficult when I spent months this year so chained to oxygen, having to exist as a blatantly, visibly sick person, and I hated it. Truly, despised it, because the first impression I gave was one of illness, and my appearance inspired pity in strangers. I cannot bear the idea of living a pitiful life. The very opposite of every intention I ever had. And I know that the next rung down on the ladder of lung disease is one where I am constantly adorned with plastic tubing. That scares me because living when it was so much effort to even brush my teeth was almost intolerable, and I don’t know if I have the strength to fight through every exhausting moment being miserable. I had rather decided that when it became impossible to be happy the majority of the time, I would find a way to end it.

But in the past, even when I have felt darkest, most lost, I still wanted to be alive. Or at least, I didn’t want to not be alive. I didn’t want to miss things, and I didn’t want to be the cause of the agony of death that I’ve felt more than enough times for any normal lifespan. I know I am most likely to die first in my family, but for it to be self-inflicted would be crueller than is necessary.

I saw Murder on the Orient Express today. There is a notion in the story, something I have thought about before, when we lost Dean – that when one person dies, there is a ripple, an avalanche. Everyone around them dies too, at least a little. I can’t instigate that kind of pain, not on purpose. I think there will be moments in the future in which I don’t want to be alive, not right then. It has happened before. But there are also always things to come that bring me happiness. Maybe I can adjust to a different life. Again. I just think that while I am able, I ought to endeavour to enjoy the time I have, whatever way I have it. To try to improve the lives of people around me, and use my voice to champion the things that have kept me here thus far.

Even when everything seems merciless and wearisome, for as long I can hold on to some strand of hope, I won’t let go.

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The 5th of November. 

I hate Bonfire Night. I hate fireworks and bonfires. The brightness hurts my eyes and the smoke hurts my lungs. I hate them because I can’t enjoy them like a normal person and I am bitter about it. At least now they might stop until New Year. 

Did a blog post this morning, no great excitement there. I could hear Mommy upstairs in my bedroom, hoovering, and it made me think about all the stuff she does that I can’t and how I’ll cope if it gets to a point where she isn’t able to do those things. Hoovering, dusting, making my bed. I don’t like thinking that far ahead. But the only way for that scenario to be avoided is for one of us to not be alive and I am not a fan of that idea. In fact, I can’t bear it. Hence avoiding the future. 

Well, that was bleak. This afternoon, a lady called Tracey came with her partner to view Chester. He’s nowhere near ready to go and she knows that, but they got to meet and she could see if he was suitable. We think he will be – he’s going to be a friend for a sad dog. They left after about an hour, having provisionally agreed a date for adoption, which works for all of us because it means Christine will get to meet him too. 

The 6th of November. 

I was wrong about the fireworks. People are still doing it this evening, presumably because they are awful. Bah. And I woke up in a weird mood because I had the same dream about being a serial killer three times from different perspectives. 

So I’m tired. Physically, mentally. My muscles hurt from getting up from sitting on the floor with the kittens so every time I stand up I groan. Most of my day has been spent working on the last gnome, the biggest one. All his parts are now finished, so I’ll assemble him tomorrow. 

I had to ring the GP because they’d called on Friday about a letter from the dental hospital. When I did, the receptionist said it was a secretary who’d phoned but she doesn’t work on Mondays so I have to ring back tomorrow. Why a random secretary from the GP is ringing, I don’t know. 

I’m really not looking forward to my lung function tests on Thursday. I know the results are going to be shit and I really don’t feel like hearing for definite that the pneumonia and collapsed lung have resulted in permanent damage.