Archives For chemo

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. 

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 20th of August.

I really looked at myself today and realised that things with my body are not good. I was kind of taking each issue separately, but all added up, it’s pretty bad. I’ve been bleeding for a month now, am still very trembly, my memory has turned to mush (I’m fairly sure this is all some fucked-up hormone stuff – the menopause clinic on the 2nd cannot come soon enough), I’ve lost weight and muscle mass due to the steroids and I’m far too thin for my liking – I’m going to have to really consciously up my calories, even though eating too much of anything makes me burp ridiculous amounts, my facial bruising is taking its time to go away – I’ve basically forgotten what I should look like. Frankly, I am sight to behold.

I didn’t wake up until five, which was good! My day has been very sedentary, as the hole in my groin hasn’t fully healed, so I’ve been watching TV and reading The Goldfinch. I’ve got about 250 pages left, and it’s all a bit intense and I had to stop and have a break!

I have deflated enormously. It’s so dramatic.

The 21st of August.

Oh tonight I am weary. Awake from four again, and I have pretty much fully deflated now. Except my left wrist is still slightly swollen and we’re a little bit concerned that I may have a hairline fracture from the fall or something. 

It’s been really quite a busy day – this morning I was emailing Dan from the Sutton Observer, then I went into town with Mommy because she had to give blood and I needed some wrapping paper, so I sat in Starbucks and read The Goldfinch while drinking a terrible flat white while she did so.

When we got home, we had lunch and I finished the book (the final passage is possibly the most beautiful thing I’ve ever read) and we baked the gingerbread soldiers and chocolate and vanilla pinwheels from John Whaite’s book. He replied to my tweets again! Bless him.

I also spoke to Alison from the Birmingham Mail/Sunday Mercury and she wants to do a piece this week, and they’re coming round for photos tomorrow afternoon. Tomorrow will be busy too.

Today has been GCSE results day. On mine, I went to school, got my results, then went back to BCH to start chemo, and that evening we had a takeaway Caspian Pizza in Bay 3.

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