Archives For gvhd

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 6th of June.

My right shoulder is the problem today. Honestly, my body just feels like a disaster zone lately.

This morning, I wrote up a blog post, then I listened to the new episode of The Naughty Step and gave the kittens a pet before a trip to Black Sheep for Michaela to cut my hair. She was away when I went for my colour, so I had to wait. It was getting far too long and tufty. Had a good chop and chat about life, gave kitten updates, and had barely finished my coffee by the time we were done. Daddy picked me up on his way back from that dump and we came home.

Had to eat some lunch very quickly, remove my eye make up, and go back out to the QE to see Mr. Kolli. Had a blast from the past while waiting for my name to appear on the screen when a girl called Rosie who I met at BCH came over. She works at a care home so was with a patient, but it was nice to see that she is fine. My eyelashes are behaving themselves for now, so I don’t need to have any more removed yet, my pressures have come down a bit (after several attempts to measure them), and my GvHD is inactive. Plan now is to do steroid drops every day for two months, then stop, and do the pressure drops every day until a week before my next appointment with him in three months. Let’s hope my eyes continue to cooperate.

The 7th of June.

Well, Dolly has been a right old pretender. Not in her disdain for us, but the kittens. All this time she has acted like she doesn’t care about them, completely ignoring them, but we had to separate them last night so they wouldn’t feed from her while they were meant to be nil by mouth, and she has made the most forlorn sounds all day. Constantly mournful yowls, so I spent my morning replying to every mew and giving her Dreamies. She only really quietened down when she fell asleep. I don’t know how she’s going to cope tomorrow night when they’re gone and not coming back.

I stayed with her until lunchtime, came out to eat, then I went back in until it was time for us to go and collect the kittens. I really don’t know if me sitting with her helped at all, but I couldn’t bear to be out of the room and hear the sadness.

Had the bonus of meeting some good dogs at the vet, and the kittens had all been fine, they just screamed all the way home. Must warn the people tomorrow.

The 29th of January.

Finally I had a good night. Let’s hope it continues.

This morning, I did a blog post, then got back to work on Anton the angel. His hair took pretty much until lunchtime as it involves tiny complicated stitches. Glad that’s over.

I also rang Piccadilly to book an eye test because they sent me a reminder last week. I went to the last one and she basically couldn’t read my results because the GvHD had made my vision really inconsistent, but I think it might be stable enough now for us to try again, so that’s Thursday.

After lunch, my Little Prince soundtrack was delivered (nobody bought it for my birthday or Christmas so I had to treat myself) – I had to buy the CD because the music is not digitally available anywhere! Now I have to do something I haven’t done for years and rip a CD. I bet the youth wouldn’t know what that means. Then I made the halo, wings and arms of Anton, and put him together. Three down, three to go.

The 30th of January.

I have been awake since quarter past four. Not thrilled. I don’t know why – just woke up and couldn’t get back to sleep. Now my brain is all itchy and I’m looking forward to bedtime.

I have at least been productive. My crochet magazines have come back out of hiding after Christmas and I decided it was time to digitally catalogue the patterns I wanted to keep in PDF form. I’ve been able to get rid of all my TOFT magazines, which took a couple of hours and about 30% of my phone battery. I’ll have to do a few of these sessions to get through them all.

I then got started on Woody the pine cone, and worked on him until lunchtime. I also had a delivery of a yarn swift, which is like an umbrella you can stretch a hank of wool around and it holds it taut while I use the other thing I ordered, a yarn ball winder to make it into a ball! It is so satisfying and much quicker than my previous method, which involved chairs and tables which didn’t stay still and took hours. I did five balls today in the time it took me to do one before. It was still tiring though – my heart rate went to to 135 winding the spool.

After that, I ripped The Little Prince CD to my iMac, then I made a coffee and returned to Woody while watching Blindspot. It seems somewhat nonsensical so far.

The 5th of December.

Ugh fuck I am tired and sad and stressed.

First thing I had to do was to out with Mommy to the sorting office to pick up my Christmas shoes, but that was the only good part of the day.

When we got back, I wrote up a blog post, and that took longer than it should have, which was bothersome. Then Rosemary came for lunch, so that was distracting and meant I couldn’t get on with more jobs.

I had some of the soup and cheese scone that Mommy had made, then I got on with my planned work. There are just loads of questions that keep coming up in the organisation of this event – it is a lot more complicated than I had imagined. I sent Daddy an email with some questions which he had additions to, then he got angry with me because he misunderstood my reply. I think we are friends again now though.

After that, I got my crochet out and have essentially completed one present. Two more to go. Then two other things to make. Sigh.

The 6th of December.

Mood greatly improved, despite a dodgy sleep and an early start. I woke up at three, then again at half five, after which I didn’t go back to sleep. Really hoping tonight is better.

I had haematology clinic this morning, where I met a new reg called Dr. Hussain. One of the first things he asked me was if the paper about me had been published yet, to which I didn’t know the answer. Just because I am the subject, it doesn’t mean I am kept in the loop. He didn’t have much to do for me, except my prescription, and took up the majority of my appointment. Then the pharmacists wanted to know about how my eye GvHD was treated, so I did some educating. Always teaching.

Pharmacy were going to take ages to fill my script, so we went into town to pick up two bits from Selfridges – Daddy’s Secret Santa for work and Jonathan’s birthday present. Back to the QE, picked up my drugs, home.

This afternoon, I did some crochet, and had a conversation with a chap from the venue of the event I’m organising so I could ask him the questions I’d talked to Daddy about. Once I was satisfied, I got the booking form back to him, so I should be able to announce it tomorrow!

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 16th of September. 

I have to keep reminding myself that today is not Saturday for some reason. It just hasn’t felt Saturday-like to me. 

It should have been obvious to me from the start, because I spent the morning in front of Saturday Kitchen. For a lot of it, I was consulting with Emma on her suspected skin GvHD, then writing up a blog post. Couldn’t remember if I had to do that or not until I checked. Brain wasn’t at home today. 

Then again, it kicked in as we watched Only Connect over lunch, because we got several points outside of our normal remit (missing vowels). Then this afternoon, I did a bit of podcast listening, made a couple of visits to the kittens, and finished off the scarf I started yesterday while catching up on Celebrity Masterchef. Finally, I am free of Lesley Garrett. Quite glad to be rid of the Reverend Kate too, because she was becoming rather infuriating. 

Last night, Hugo remained sat on my lap without being constantly fed treats. This is a major win. Henrietta, however, made me bleed again. 

The 17th of September. 

Right, today is Sunday. Definitely. Woke up mid-Sunday Brunch because it started early, and had just got downstairs when Mommy and Daddy were came back from taking Grandma to church. I had my breakfast, then went back upstairs to make myself presentable for going out, as we were going to Birmingham Independent Festival at Aston Hall. 

They waited for Grandma to call once she was done with coffee, then I was to be ready to go out upon their return. I petted the kittens (got some actual audible purrs from Hugo, yes!), put my boots on and off we went. 

We’d almost arrived, when Mommy realised she’d forgotten the tickets. Thankfully, she was able to forward me the email and we could just show the attachment to get in. Phew!

It was pretty much all outside, and the weather was nice, so we looked around at all the different food stalls, trying to decide what to eat. I played it safe and went for a margherita pizza which was a good choice because it had a really soft, doughy crust, just how I like. I found a place to sit and eat while I waited for my parents to join me, but first I was checked out by a wasp. It decided to fly really close to my face and land on my glasses, then come round and land on my ear, right on the tragus and I started to get genuinely worried that it might sting my face or crawl in my ear. My tactic is usually to stay really still, because if one flails about while in a wheelchair then people think you are having some kind of episode. It eventually flew off, and I was texting Christine about it when it came back and landed on my finger. Fuck’s sake. Thankfully, Daddy came along then and it went away for good. 

We ate our lunches, got some coffee from Faculty, then I got a beaver tail from Cake Doctor, which is dough, deep-fried and rolled in cinnamon sugar. So good. There were then craft stalls inside to look at, but they ended up not being really anything we wanted. In fact, there was more food, so I bought a chocolate custard doughnut for later. I am full of sugar. 

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The 10th of February. 

The news is so depressing, I have put Phineas and Ferb on instead. It is a nice distraction, and there are amusing bits for grown-ups. 

I had planned on being productive today, but somehow it did not really happen. I wrote up a blog post this morning, although in writing that, I’ve just remembered that I didn’t publish it yet. Will do that when I’m finished here. 

Mommy went food shopping, so I was twiddling my thumbs while waiting for her to come back so we could have lunch, but it took somewhat longer than I anticipated, so that was time wasted. Then after we had eaten, we decided to watch some more Case, and I can’t crochet while that’s on because I need to pay attention to the subtitles. 

So, two hours were gone on that, and now I have half a doily. One positive of the day is that I found another jumper that can accommodate my ginormous arm. The parka is not going to cope anymore, nor will it keep me warm, so when I go to the QE in the morning, I am going to have to wear Joan’s enormous fur that she gave me. Knew it would come in handy one day.

The 11th of February. 

One can never call a day when one is up at quarter to seven (particularly when that day is a Saturday) unproductive. I had another hospital appointment, this time with the eye department because of the ridiculous sensitivity that I’ve had for the past eight months. First, the chap could see that I had several lower lashes in my left eye growing inwards so he numbed it, then whipped them out with some tiny tweezers. There is also some mild GvHD acting up, not cool, so I’ve got some dexamethasone eye drops and hopefully they will do the trick. 

Went into town afterwards to get some toy stuffing, and got some more of my favourite chocolate from Selfridges as it was half price (slightly worrying – I hope it doesn’t mean they’re going to stop stocking it), alongside some triple double chocolate Oreos which we are going to put into brownies. 

Popped into Tesco on the way home, where I felt very overdressed, driving around in the fur. It’s not for supermarkets. Then I was starving by the time we got home, so we had lunch, and since then I’ve been crocheting Carol’s birthday present. Becky came round because I’d bought her some Malteaster bunnies, and she updated us on the local news, which is that the WHSmith has had its cash point ripped out. Plus school news was swapped for health news, and now I’m watching us probably lose to Wales at rugby.