Archives For bone marrow transplant

The 30th of July. 

Not quite one’s average Sunday. The morning was fairly standard – Sunday Brunch, blog post. This week’s comedian pal appearing on the show was Joel, who ate some chips in order to make Nish lose a wager. 

After taking Grandma home from church, Mommy and I went into Sutton to get Pandora charms for today and August. I also got a chocolate dreamcake Krispy Kreme because it’s a day to celebrate. In the end, I went for the anchor charm at Pandora, because they describe it as the “symbol of hope” and hope was all we had at that point. My chances were 20% of 20%, which works out at 4%, and yet somehow, nine years since my second stem cell transplant, I am still here. 

When we got back, we had lunch, and I spoke to a girl who is interested in adopting Betty. She actually happened to be very near my house when we talked, so she came round straight away. Betty was her usual charming self, coming straight up and purring away like a champion. It seemed to go well; she’s gone away to think about it and fingers crossed she wants her. 

The 31st of July. 

My brain was very busy in the night, dreaming about all sorts of things. 

This morning, I worked on the panda head while communicating with Philippa to find out if James had sent my referral to the lymphoedema clinic. She said it had definitely gone, so then I rang the clinic who confirmed that they’d received it, but I won’t get an appointment until October! SIGH. I’m going to have to find someone else to see because I can’t do nothing for another two months. 

After lunch, I went up to the QE to see Dean. He was starting his chemo today so it was a good day to go before he starts feeling too ghastly. Although he wasn’t feeling wonderful today, bless him. Issues with chemo timing hadn’t helped, and pharmacy were being dreadful – his chemo was meant to be at one, but it still hadn’t appeared on the ward when I left at twenty to five. He is taking his mum to see Miss Saigon tonight and I really hope they got there because he’s been looking forward to this for ages. It was nice to meet his mum and younger brother; I have heard much about them so it was nice to have faces to put to names. 

Tonight I’m off to Denise’s for a Cats Protection meeting to try to work out what we’re going to do about homing. 

Eight years that I would not have had if the current rules had been in place. Patients will be denied the chance to have the same based purely on some bad luck, and that is fucked up.

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Do the right thing Jeremy. We don’t deserve to die.

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Reasons Why #IGiveASpit.

August 4, 2015 — 3 Comments

Eight years ago, someone sat me down and told me I had a rare form of leukaemia, a kind that was very unlikely to be dealt with by just having chemotherapy, and I would need a stem cell transplant. I didn’t need Anthony Nolan that time, because I was lucky enough to have a big sister who was a 100% match for me. What isn’t always immediately mentioned with stem cell transplants is that when dealing with cancer, the doctors want your donor to reject you a little bit, in a condition called Graft vs Host Disease. The donor cells recognise the recipient as foreign and they attack, which can be troublesome, but they also attack any remaining cancer cells lurking in the bone marrow. I didn’t get any GvHD from my sister because she was so good, and four months after my transplant, I found tumours in my face. I’d relapsed. I’d been previously told that if the transplant didn’t work, there wasn’t anything that could be done, but that wasn’t strictly true. I was offered a second transplant, but I had about an 80% chance of dying. I decided it was worth the fight. I couldn’t use my sister again, and we needed to search the world. 

We found a donor in Germany, but he was then suspiciously unavailable to donate on the day he was needed, which was the day of a big German football match. We were all set to use my dad’s cells, when a new German came on the scene. He was 18, not as good a match as the previous one, but much, much better than my dad. I got a dangerous amount of GvHD from him, mostly in my gut and liver. The lining of my stomach was destroyed, and I had no enzymes to digest anything, so was IV fed for over a year. Eventually that healed though – my liver was not so lucky. The damage from the GvHD was too great, my bile ducts had shrivelled to nothing, and I was put on the liver transplant list with about a month to live. I got it with just a few days to spare. 

However, some of the stem cells that came with my liver went on a journey to my bone marrow, decided they quite liked it there, kicked the German out, and so I effectively had a third, accidental stem cell transplant. This one gave me chronic GvHD in my lungs which prevents me from living anything resembling a normal life, and now I need another liver transplant because my bile ducts are harbouring superbugs which will kill me, but my lungs won’t support me through the operation. However, they’re also not bad enough to warrant replacing, and that isn’t going to change. 

My point is this: I am a miracle, indescribably lucky to be alive right now, and I wouldn’t be here without my donor’s decision to register with Anthony Nolan. I am incredibly grateful, but I know that I could have the life that so many of my transplanted friends have, free to live almost as if this never happened. If I’d had a better matched donor, I might be able to walk up the stairs without getting breathless, or wake up each day not worrying about coughing up junk from my lungs. I might not have had to make the phone call to my sister, my original donor, to utter the immortal words, “They said there’s nothing they can do”. That was the hardest thing I have ever had to do. I don’t want anyone else to make that call. That’s why I want as many people as possible to register to save lives. That’s why #IGiveASpit.

Register to donate here.

The 23rd of July. 

Wow I am in a lot of pain. A ridiculous amount. I cannot move without it and even sitting still it’s there, just not quite as agonising. But that is because of all I’ve done (or not done) today so let’s rewind back to the beginning.

Meant to get up at five but woke up half an hour before that. Not ideal but OH WELL, it meant I had extra time to have coffee and not get stressed. Always glad for that.

We had an interesting start in the assistance office; a guy came in and was annoyed because the station staff wouldn’t let him through the barriers because he didn’t have a ticket. This was because he’d been out all night and lost his friends, phone and wallet. All he had was his keys. He was obviously still a bit drunk because he couldn’t grasp the concept of having to dial 91 before a phone number to get an outside line on the office phone when trying to call his grandparents to help him. The woman dealing with him had the absolute patience of a saint. The grandparents didn’t seem to be able to come to his aid, and he was getting more and more wound up, so in the end, I took a tenner from my purse and just gave it to him so he could buy himself a ticket. He was only going to Lichfield so it wasn’t going to cost him that much but it was fine. He then wouldn’t leave until I gave him some details so he could pay me back, so I wrote down my name and number but I am not expecting him to text me. I don’t suppose he’ll even know what it’s for. He’ll probably think he’s pulled or something. I just hope he got home safe.

Our journey was not very exciting. On train, had paper, listened to the Ghostbusters soundtrack. Rhythm of the Night has become my jam since seeing the film. As we were arriving, a girl was going to the toilet and said my name. I turned to look, and it was Charlotte who I met on a TCT trip – she has a brain tumour, but she’s kind of okay? She’s getting married, so she’s not feeling any sense of doom about the future. She and her fiancé were going down for an exhibition. We must meet up. I haven’t seen her for ages. Euston assistance was not so good this time – a Virgin chap got the ramp for us and the man appeared as we were leaving. Sorry, too late. Be there on time.

We went up the road to St. Pancras which was full to bursting of what seemed to be school parties with suitcases, so we didn’t hang around and went straight to platform 12 to get on a bullet train to Stratford International. We folded up the chair, so Mommy stayed with it in the vestibule, and I sat with a family from Yorkshire who were going to the games too. We were lucky to get on when we did because it filled up to sardinedom. Mmm, sweaty. I was glad our stop was only six minutes away.

When we arrived at Stratford, we went over to Westfield to get ourselves some lunch. Waitrose was straight ahead, so we picked up sandwiches from there, then spotted a Bread Ahead stand! DOUGHNUTS. They had about four left, so I bought a chocolate one for me and a crème caramel one for Christine. We found a horde of people going to the Olympic Park, so we waited out of the way of them to meet up with Christine. When we were stood outside John Lewis, Michael Johnson walked past and Mommy started hitting me in excitement. She was like me when I meet a comedian, bless her.

Christine emerged from within the crowd, and we joined the mass of bodies heading for the stadium. I’d forgotten how far it is. Past the Orbit and its terrifying-looking slide, a group of people surrounding Gabby Logan, taking photos of her doing a piece to camera (weird), and finally found our gate.

We were in wheelchair position seats, and had a really great view over the stadium. We were at the finish line end, facing the line itself so it was perfect for taking photos. We were also in the shade and it stayed that way all day thankfully, as we could see the people on the opposite side in the sunshine just baking, fanning themselves all afternoon.

We began with that para-athletic events, and the day got off to a great start with Richard Whitehead breaking his own world record! Unfortunately neither Jonnie Peacock nor David Weir won their races, but hopefully they do at the Paralympics, when it actually matters. Libby Clegg got a new world record too, with a guide she’s only just started running with.

There was a half hour break before the able-bodied athletes came in, so we ate our lunches and took the opportunity to go to that toilets which were very close by. To kick it off, some of the big names were brought out on the backs of trucks, being driven around the track with flames being set off to emphasise how exciting it was.

I won’t list all the events we saw – there are photos. We witnessed two false starts, both by team GB athletes which was most annoying, for them and us! Poor Martin Rooney. Jess Ennis-Hill and KJT were long-jumping away, and I’m hoping I got some decent shots of them. The men’s relay was a huge success, with the GB teams taking first and second place. Admittedly the Jamaicans weren’t there but still, it bodes well for Rio.

The last and main event was the 5000m with Mo Farah. The first twelve-thirteen minutes are not particularly thrilling, but for the last couple of laps the crowd got louder and louder, and for the final one, everyone was on their feet, clapping and yelling at Mo to win. It was clear that he would, but to actually witness it with my own eyes, to be a part of that moment was pretty special. It was nice to feel great about this country for a minute.

Leaving was slow, to say the least. There was only one way to go, with everyone being herded like sheep in the same direction by stewards. There were even people with stop/go lollipops which everyone just obeyed without question. Only in Britain would that system work. At several points we had to go across the flow of traffic to get to step-free access, but people were generally very accommodating. One of the great novelties of being in a wheelchair is that people will apologise to you and even break into a run for absolutely no reason.

We eventually got back to the station, where there was a long queue for trains back to London. However, a member of staff came up to us and told me to go straight to the front. Another wheelchair perk. We went down to the platform where a train was waiting and in no time at all we were away again!

At the other end, we made our way back to Euston where we grabbed some food from M&S and went to see the assistance people. We had open return tickets back (even though I’m certain I booked a specific train but whatever) so I wasn’t sure if they’d be able to help us. However, we were sent to a platform right away, but when we arrived, we couldn’t get on the train because they hadn’t been able to couple the carriages. In the end they got it fixed, we got on in coach G and were home an hour earlier than planned. Smashing.

The 24th of July. 

Agony. Agony all day. I can’t stand up straight. Not even in an “I can but it hurts” kind of way, in a my body physically will not do it kind of way. I can’t lie flat on my back without putting my knees up. I don’t walk, I waddle. It hurts all the time. It feels like my pelvis is literally crumbling inside me. I don’t know how else to describe it. Hospital tomorrow; I need some drugs.

This morning I was writing, and this afternoon, Daddy and I went to see Star Trek Beyond. Every scene with Chekov broke my heart, and there’s a lot of them. It’s so tragic. Plus there’s a whole thread about Ambassador Spock/Leonard Nimoy’s death, so a lot of it is pretty bleak. There are comedic moments too, but I’d expect nothing less with Simon Pegg as a writer. Of course there are flaws but I wasn’t expecting it to be amazing, just an entertaining couple of hours and a distraction from the pain, which it was.

When we got back, I decided I wanted to make a video, to ask Jeremy Hunt why we can’t afford stem cell transplants now. First I needed to plan what I was going to say, then record it and not hate it. It took a while. I managed to write what I needed fairly easily, it was the delivery that w.as tricky. Looking at my notes and the camera was not easy. I had to stop so I could have dinner, then I was straight back upstairs. I finally got a set up that I liked, then I just had to keep recording myself until I got it right. By ten to nine it was done, and I’ve sent it to Anthony Nolan before I share it. It needs to be done right to have the impact that I want. I need it to be big. I need this decision to change. Please watch it, share it on Twitter, Facebook, show it to your friends and ask them to do the same. Click here to email your MP to ask them to write to Jeremy Hunt and ask him to intervene and reverse it.

The 23rd of April.

This is pretty bad. I’m in a really terrible headspace today. I woke up in a fairly nondescript mood, planning on going to the gym. It’s a really stupid and selfish thing that has me feeling this way – on This Morning, they had the couple whose son became the youngest ever organ donor on. Obviously I am pleased for the awareness raised and new donors, but it may seems that they will take all sorts of stories on organ donation, stem cells/bone marrow, cancer, but not mine. They don’t want me, don’t want to tell my story, don’t think it’s interesting or even worth telling. It’s made me feel worthless. If my sole purpose in life is to spread the message about donation, but no one wants to hear my version, why am I even trying? But if I give up on that then I am struggling to find things that are good. Looking forward to holidays but why? What am I expecting to happen? I have no prospects of a career or relationship so what else am I here for?

So we went into Sutton for ribbon for the pig’s neck and stuff that Mommy needed, but I didn’t go to the gym because it’s very difficult to find the motivation to work out when all that’s going round in one’s head is “I feel worthless”.

So I’m under the heavy cloud. I don’t know if it’s going to last. But I don’t know how it can change.

The 24th of April.

Feeling better. I’ve been able to shake off the heavy cloud that was hovering yesterday. I woke up in a medium amount of pain in my back – more so than the past few days, so I’ve had two Tramadol today. Kate came to flush my line and take the stitch in my groin out, which was somewhat overdue. I wore a dress for easier access, but after I’d had my morning coffee, I went upstairs to get changed into some warmer clothes, including stuff that could be worn you the gym if the pain lessened.

It did, so after lunch, Mommy took me down there and I had my first proper workout in nearly two weeks. After half past four, a vast amount of youths descended, suddenly everywhere! Didn’t love that. Strange smiley boy was among them, but today I just saw him punch himself in the arse multiple times, then wander off to read a magazine because there were no mats available. I had a really excellent session, so I think I will get back into my routine quite quickly.

The 6th of August.

Awake at three. Stayed in the dark just listening to podcasts and music because I didn’t want to aggravate my eyes any longer than necessary. We were out of the house by half eight to be at clinic early, but I still didn’t see Ram until eleven. I got the stitches round my line taken out though in the meantime so that should be more comfortable.

As soon as we were in Ram’s room, I just said “This is worst I can remember feeling without infection and as hard as I am trying to stay cheerful, every so often I really do just lose the will to live and I cannot carry on like this” and wept. Mommy explained all the things that are wrong (steroids causing exhaustion, constant coldness, physical muscle weakness, constant trembling, critically low self-esteem from moonface, then we have the fact that my skin still is raw and sore, and I’m now having a period every month despite not having taken the drug to induce them and this should not be happening, but my “emergency” appointment at the menopause clinic isn’t until the 2nd of September), I occasionally supplied information, then he looked at all my skin. I had calmed down by this point, and we talked. Rituximab has to be a very last resort as we can only apply for it once and I need to be proven to be exceptional, so we’re going to just have fortnightly photopheresis, come down on the steroids and hope it all just works, really. And from things he said, I remembered that there are other patients much worse off than me.

Left pharmacy with a massive list and went to town to get some presents and some lunch, then went back to the QE, picked up my prescription, then came home. Becky came round so we could discuss Alton Towers on Friday, I wrote up a blog post, and I’m getting this done before Bake Off!

My face is even more colourful, and tonight I’ve having lorazepam.

The 7th of August.

My first day of 40mg of pred for two weeks. Let’s see how this goes. Lorazepam last night really actually did some good, so I got up at maybe half past eight? Admittedly I wasn’t sleeping all the time until then but I was rested.

Mommy gave my hair a good wash, and I put a big old mask on my hair to try and give it a bit of a boost as I attacked it quite brutally with a hairbrush on Monday. And my Moleskine wedding planner for Becky’s wedding arrived!

I’ve done nothing of importance today because of it being a lorazepam day, and I’ve just found out little Margot Martini is almost definitely going to die. For fuck’s sake, she hasn’t even had a chance at life yet.

All I’ve done is wear cooling eye masks and watch shit on the box I didn’t need to remember. Kathryn, you are still here. Get more donors. This could’ve been prevented.

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