Archives For bmt

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. 

The 30th of July.

I hate dealing with incompetent people. 

This morning I blogged, very boring. I had a phone call from Jo, the BMT co-ordinator, saying she’d put in a request for me to have my line out on 621, and shortly after hanging up, someone from there rang me offering me a time which I agreed to without looking at the diary. However, when I went to put it in, I realised it was the exact same time as my appointment with the kidney man. I rang back and spoke to someone who didn’t know who I was and claimed they didn’t do this procedure on the ward. I disputed this, saying they clearly do, as I had literally just been speaking to someone who’d offered me a time for it which actually wasn’t convenient. But the numpty didn’t know what to do, so I rang Jo back and told her what had happened, and then I had another call offering me an hour earlier, which I didn’t think will work as I’ll need to lie flat afterwards. They’re waiting to hear from another doctor, and I’m going to ring back in the morning. Igor would have sorted this. 

After dealing with all that, I went and worked off some stress in the gym. Leg press is still out of order, but I got to do everything else. The smiley boy appeared and thought he’d squeeze a spot in the mirror, and at one point picked up a bar near my head, putting his face about a foot away from my face. It was somewhat surprising. 

Raccoon legs tonight. 

The 31st of July.

Today is seven years since my second stem cell transplant. They came from a German fellow who was just eighteen, and he was found in the nick of time. One potential donor had been unable to donate on the day he was needed, and we were all set to use Daddy. If we had, the cancer would almost definitely have come back and I’d be dead right now. Even though his cells got kicked out by the liver donor, we shared DNA, and without him, I wouldn’t have had to have my liver transplant or the stem cell miracle that came with it. The GvHD might have nearly killed me, but the treatment made me cancer-free for good. He’s a hero. 

This morning I sat around waiting for nurses to come and flush my line, but when it got to lunchtime and no one had showed up, we decided to eat and go out. They didn’t come while we were out either so obviously they suck. We had to go and pick up a duvet cover and take back a dress, then went to Pandora to get my German flag heart charm, and I got a Brownie Bomb from Selfridges to celebrate my marrowversary. 

I’ve made two legs of Jessie, and we’re no further on in getting my line out. Going to ring up on Monday and prod them some more. 

One day seven years ago that changed everything. He doesn’t even know. 

The 18th of December. 

Well, today has been much less great than yesterday. At about half past midnight, my breathing suddenly became much more laboured and I needed to use the oxygen to be comfortable. Combined with the pain I’m still suffering in my feet and ankles, I didn’t fall asleep until half past four, and I was awake again just after six. 

I’m also concerned about my mouth – it’s just starting to break down in my cheeks, plus a teeny ulcer on my tongue and sore lips. We rang the dental hospital to see if Mrs. Richards could see me as an emergency appointment in case she thought I needed a steroid injection. They were really brilliant and got me in to see Jon Higham who I’ve seen before while there was no one else around. He could see what I meant but didn’t feel injections were necessary and might even be detrimental. We’re going to hit it really hard with topical steroids, plus I’ve gone back up to 5mg of pred. It’s fine; I’d rather have it all under control over Christmas. 

We went to the QE for ECP afterwards which was all fine, and Igor sent an SHO to come and see my elephant feet. Everyone agreed that my oedema and breathing can’t continue, so they’ve given me a new drug regime and I just hope it works!

I would like two things for Christmas – to have normal sized feet and to be able to eat the foods!

The 19th of December. 

Happy marrowversary to me! Today is seven years since my first stem cell transplant from Christine. I got a penguin charm from Pandora, and Christine is the big penguin and I am the small penguin!

I had my fringe trimmed at Bad Apple at lunchtime so I took them a Christmas card and a copy of Grazia. Michaela really liked my fringe in the photo so cut it like that and took a photo. Then Amy was free and I got her to paint a couple of Christmas Minions on two of my nails which are awesome. Then Mommy came to get me and we had lunch at home before Naomi came!

She and Mommy used to work together at the Hippodrome and have stayed friends and she’s just lovely. We haven’t seen her for ages so she came over with lemon drizzle cake, flowers and presents and we had a long-awaited catch up. 

Just after she left, I saw on Facebook that a little boy we know is getting a new liver and bowel tonight! He is in theatre as I write and it is just wonderful. An incredibly kind family have made the brilliant decision to allow their loved one to save someone else. Life is blindsiding and magical. 

The 31st of July. Happy Marrowversary to me! Six years ago today, I had my second stem cell/bone marrow transplant from an anonymous German chap, only a year older than me. I don’t know how I feel about it now – yes, he gave me all the GvH that destroyed my liver, but without him, I may not have even got there. I do wonder sometimes if he remembers, if he thinks about me at all. This morning I worked out which felt great except at the end when the postman arrived and I had to answer the door all sweaty with my hair scraped back, such an attractive state. I did say “You could not have come at a worse time’! Mommy washed my hair, then we went out for lunch to celebrate my marrowversary! We went into Pandora to get the charm that is customary on these occasions. I got the passport, as we went to Paris right before my second transplant. We went out to The Balcony Brasserie in Selfridges, where we shared the charcuterie and seafood boards with some peas and broad beans, then Mommy had lemon meringue pie and I had Oreo cheesecake and a virgin apple mojito. Then I bought myself some nail varnish, masara, aloe vera gel (not such an exciting treat) and we came home! We watched some tv and ate a hot cross bun each, then went to pick up Daddy from work before going to see Wicked! It was fun, although it brought back loads of memories of when Lauren and I were supposed to be Elphaba and Glinda, just before I relapsed, and I may or may not have wept at For Good. I had such visions of us both singing that together and we never got the chance. Despite the family behind us have zero theatre etiquette skills whatsoever, I’ve had a wonderful day. The 1st of August. Well I am so tired, I tried to eat a chocolate mousse with a fork tonight. It would have worked, but taken an awfully long time. Also, one night of bad sleep and the trembles are back with a vengeance. Spent the morning waiting for Katie the nurse to come and flush my line and change my dressing, although she did it so dreadfully that we had to redo it after lunch. When she was gone, I worked out but not particularly efficiently. Not sure what was off with me today. I caught up with Utopia, Mommy and I finished the series of The Biggest Loser Australia, and I wrote up a blog post. Oh, I’m so tired. I don’t like today and would like to go to bed please. Which is such a contrast to yesterday. My skin is so sore. photo 1 photo 5 photo 3 photo 2 photo 6 photo 7 photo 8 photo 11 photo 12 photo 13

I am angry because I knew this would happen and none of them listened to me. None of them were concerned that I wouldn’t have ECP for two months, despite a recent, quite severe flare. So we carried on as we were told, slowly tapering off the steroids and waiting for the new line to be put in so I could carry on with treatment. But then, while we were away, the GvHD on my hands and arms started flaring up again, with us having to go up to ten and then fifteen milligrams, then twenty and today thirty of pred to try get it under control. Which means that I have to now endure months more of misery because every time I look in the mirror, I am reminded not only of just how unattractive and stupid I look with this huge moon face, but I’m also just reminded that I’m on these damn things that remove my ability to sleep and make my immune system weaker and more susceptible to one of the bugs that’s going to eventually kill me.

Half of my self-esteem comes from how I look because frankly, when my face is its natural shape and I’m walking around, I think I look pretty fucking great. However, when I’m trapped in my wheelchair and my face is abnormally round, it makes my short hair look ridiculous and I feel like I look like an idiot because this face can’t take short hair. My eyes disappear into my cheeks and I lose any bone structure I have. I know it sounds shallow, but it matters to me enormously, and looking the way I do and will continue to until about two months after I’m off steroids, makes me literally not want to leave the house because I have no confidence whatsoever. 

It’s fine for the doctors, nurses and people who arrange line insertions – they don’t have to endure the months of no sleep and suicidal feelings every time they see their reflection. I would do anything to not be on steroids. I would go into hospital and have photopheresis every single day if it meant I could come off them more quickly. I would up my tacrolimus dose if necessary. Or try rituximab. Anything. I cannot live like this. 

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To everyone that reads this,

I feel that it’s necessary for me to write something following the outpouring of love I have felt from the internet since the Cosmo piece came out. It has been totally overwhelming and truly heartwarming to hear from people saying I’ve inspired or moved them in some way. I try to reply to everyone with a “thank you” but it really doesn’t feel like enough – it does not come close to really conveying how much I appreciate every single message.
The truth is, I never set out to be an “inspiration” of any sort – I just wanted to get through having cancer and return to my normal life. But then the cancer came back. And GvHD happened in my skin and gut. Then it attacked my eyes and I lived in the dark. Then it delivered what would be its ultimately fatal assault, shrivelling the bile ducts in my liver to a degree that left me with days to live and having to accept a sub-standard, unmatched organ because the alternative was to be poisoned by the bile that filled my bloodstream.

No one expected the stem cells from the new liver to move into my bone marrow and expel the German donor, effectively being a third stem cell transplant. How could they, when I’m the only person I’m the world for all this to happen to? It’s great to be a medical marvel, but not when no one knows what to do with you because there’s no precedent, and you’ve got GvHD in your lungs from your liver donor and the damage is irreversible. Now the liver is misbehaving, even after more surgery to reconstruct it in 2012, and it can’t be fixed. I planned on living big, to have people know my name, but I didn’t think it would be for dying.

And there are so many ways this could have been prevented. If there were more people on the Anthony Nolan register, I could’ve had a better donor who wouldn’t have given me quite so much GvHD. Failing that, if there were more people registered to be organ donors and less families who refuse to let their relatives be one, I might have got a better liver which wouldn’t be failing now, or the third stem cell transplant might not have occurred and my lungs would work properly. Or if drug companies had been more interested in new antibiotics ten years ago, the bugs I’m growing now might be treatable.

But that’s not the case, and instead here we are, and my only way to affect the world is to shout from the rooftops about all these issues to try and prevent this from happening to anyone else.

And it seems to be working. At least, I think so. People are tweeting and emailing me saying they’ve signed up or talked to their families and it feels fabulous to know that it’s because of me. If everyone that’s followed me since the article came out signed up, over 150 people could benefit. We still need more though, considering over a thousand people died last year waiting for transplants.

This started off being about gratitude and has ended a bit rantily. It should end with thanks though. I am so grateful for the life that I do have, the people in it and the things I’ve been able to do. I have been so lucky, and am so privileged to affect so many lives. My point is thank you, but please don’t stop here. Keep signing up and talking to people about these things, because if I’m going to live big, I’m going to do it through all of you.

Hollyoaks have made numerous mistakes in this plotline, and after reading a new spoiler this morning, it’s ridiculous and I need to say something.

I understand that they have artistic license etc but they seem to make a real effort to stick to the truth when it comes to emotional storylines e.g. the rape of John-Paul, but medically they do not seem to care. This infuriates me. As a recipient of three stem cell transplants, I know what is supposed to happen and how it works.

At the beginning of the storyline, it was fine – Hilton had an immune-system disorder of some description and needed a transplant. They have referred to stem cell and bone marrow transplants, which are very different things. Also, both “operation” and “procedure” have been used to describe what’s happened. Again, very different things. Now, apparently Hilton is going to start rejecting the transplant and needing another “operation”. This is not how it works.

First of all, they ought to have decided whether he was going to have a stem cell transplant or a bone marrow transplant. Stem cells are used much more commonly in this country, as they’re much easier to harvest – the donor sits in a chair for several hours having their blood separated out and given back while the stem cells are kept to be used for the transplant – stem cells are a blood product. Bone marrow is sucked out of (usually) a bone in the pelvic/lower back area with a large needle after the donor is given some local anaesthetic. I have had this procedure many times and it is not a big deal. It aches, you take some codeine. Bone marrow is usually only used for a transplant if the donor is under 16 (children’s bodies aren’t very good at coping with the harvesting of cells) or has some other health condition that makes it necessary. When a recipient receives the stem cells during the “transplant”, there is no operation, it is exactly like a blood transfusion, but done very slowly. No anaesthetic, no cutting, it is a bag of cells.

So it seemed that Hilton was going to have stem cells. Fine. On the show, he had the cells, then later that day they were overjoyed because the cells had taken and it was all fine, hooray. Except it takes much longer than a few hours for doctors to know – they can’t tell until at least four days later that they’re engrafting.

And now he’s going to start rejecting the cells! Except that isn’t how it works. There is a thing called Graft vs. Host Disease, which is when the donor cells recognise the recipient’s cells as foreign and they attack, and it can happen in any system in the body. I have had it in my skin, eyes, gut, lungs, mouth and liver. It was so bad in my liver that is actually caused it to fail, and I had a liver transplant, which inadvertently caused my third (accidental) stem cell transplant. So the rejection is actually from the donor, not the recipient. The treatment for this is not another transplant. The treatment for GvHD is steroids, lots and lots of steroids. If the steroids don’t work, then photopheresis is the next step, which is a blood treatment that I have that’s far too complicated to go into right now. GvHD can happen within 100 days of transplant (acute) or after 100 (chronic). You cannot just give someone another stem cell transplant – no human body could hold up to it. The conditioning chemotherapy needed beforehand is hardcore, and you can’t inflict that upon someone again so quickly – it’s almost certainly going to kill them.

Another issue is that they were only searching within Hilton’s family for a donor. Again, not the case! There are registers (Anthony Nolan, Delete Blood Cancer etc) which you can join (you just send them some of your spit and if your tissue type matches with someone, you get to save a life! Cool!) and thousands of people have transplants from unrelated donors. My first donor was my sister, but she was too good so I got no GvHD (they like you to get a little bit as it kills off any lurking leukaemia cells) and my cancer came back. My second donor was a chap from Germany, and I got loads of GvHD, eventually causing my liver to fail and making my liver transplant necessary. Because my body had had chemo so recently and the cells hadn’t really engrafted totally yet (it was just a few months), the stem cells from the liver travelled to my bone marrow, kicked out the German and my DNA became that of the liver donor. Now I have GvHD in my mouth and lungs. But that is immaterial.

The reason this has made me so mad is that now my liver isn’t functioning properly and the only way to fix me is to have another liver transplant, but I can’t go on the list because my lungs would not hold up for the operation and I’d never come off the ventilator. This would not be happening if my German donor had been better matched to me (he matched on all the criteria bar one which now seems quite critical) and one of the things I want to do with my remaining time is get as many people to register to be donors as possible. The HO target audience is exactly the group of people who make perfect donors – young, healthy people. Registering is easy, and all this misinformation is incredibly dangerous – instead of giving people the truth, they are messing about and not helping the cause at all. They are peddling fear.

I think that’s everything I wanted to say. Am I overreacting? I want to know how other people feel about this. I just don’t think it’s acceptable to make stuff up about real, serious medical issues.