Archives For stem cell transplant

Here’s to ten more.

August 16, 2017 — 3 Comments

“We found leukaemia cells.”

I was woefully unprepared for those words. It was 2007; I had a Samsung flip phone and no hopes of Googling “causes of anaemia” while I waited for bags of other people’s blood to drip through and tried to ignore the snores of the father of another patient. There hadn’t been much chance to chat with my family about what I might have, as I’d been admitted the evening before, given all the blood, had a bone marrow trephine and lumbar puncture the next morning, then spent the rest of the day sleeping off the general anaesthetic. When the doctor came to speak to me and my parents and took us to the nurses’ staff room to talk, I didn’t yet know that being taken somewhere private is code for bad news, so I went into that room with no sense of trepidation whatsoever. I came out with my life as I knew it completely changed. 

I’ve told the story of the next few years so many times, I’m not going to now. It’s here, if you need the background. 

Whenever I meet someone and inevitably have to tell them about my life, they almost always ask “Are you alright now? Are you better?” and I don’t know what to tell them. I tend to say “Well, I don’t have cancer anymore” because that’s the only answer that’s true. What is alright, or better? If we’re comparing my body before cancer to now, I used to be of a healthy weight but not mind, smoked, drank a lot, took drugs and was not a great person. Sure, I could walk around and do as I pleased, but I was a deeply unhappy sixteen year old and I’m not entirely sure I like the path I was headed down. One good thing getting diagnosed with cancer did was put a pause on my life; all my bad habits had to stop, I had to talk to my family, and become friends with my older sister, who became somewhat vital in the saving of my life. The vague ambitions I had for my future had to be put on hold while I considered what I was really equipped for, whether I was healthy or not. All my friends did their A-levels, went to university, moved out of our city to jobs and lives elsewhere. I still see some, but we are different people now and our lives don’t fit together the same way. The world is very different now too. When this all started, I couldn’t live-tweet my A&E trip because that concept didn’t exist – the only way I accessed the internet during my inpatient chemotherapy was through a dongle attached to my mum’s work laptop. Facebook still said “Kathryn Cartwright is…” for a status update. I wasn’t able to join the worldwide community that you now find if you start blogging about being ill. I didn’t know how much you could worry when a cancer friend you only know from Twitter goes quiet for more than a few days. I didn’t know I could care so much about how this country is run, that I would be the person worrying at night about how I might survive if things carry on the way they are, that it could be so scary to be really vulnerable. It is terrifying to become disabled overnight, when I used to feel so invincible. 

But now I feel invincible in another way. I was given terrible odds, even to begin with – 20%, at the start. When I relapsed, they dropped to about 4%. When my liver failed, I had days to live by the time I got to transplant. What happened after that, I logically should not have survived. Nobody else has. I’ve had a pulmonary embolism, a collapsed lung, pneumonia, sepsis, a very persistent superbug called klebsiella, my bile ducts had to be reconstructed, I was told in 2013 that I needed another liver transplant but my lungs wouldn’t support me off the ventilator, so every infection since is my potential killer. People keep telling me I’m going to die and I still haven’t. People also keep telling me that I should bottle what I’m made of, because it’s strong stuff. And that I’m lucky. I think lucky is a relative term. I am lucky in that I have survived, but I am unlucky compared to some of my fellow patients who are living completely “normal” lives now, with no ill health to speak of. We are all better and worse off than people we could measure ourselves against. I choose not to really think about luck. Neither luck, nor cancer, nor any of the other things that keep getting thrown at me have made me the person that I am today, ten years later. 

And what a decade it has been. I like this person. I have a great relationship with my family now, I love my friends, I actually give a damn about people other than myself and am doing things to make a difference. I love being able to work with Anthony Nolan, helping them by telling my story to people who matter and raising awareness about the work they do. I have a better understanding with my body, working with it, not against it, the way I have in the past. I am empowered by the things I can do, not discouraged by what I can’t. I try to use my experiences to inform other people who are going through them for the first time, navigating a system that can be tricky and unhelpful. I always wanted everyone to know my name but I never really knew what for. Now I think it’ll be fewer people, but I hope they’ll remember me for a more important reason. And I’m not done yet. I have books to read, things to make, shows to see, people to meet, words to say, wrongs to right. The last ten years have by no means been fun all of the time, but the highs when they come are beyond measure. I know it’s taken a long time to get here, but I feel like I am just getting started. Here’s to ten more. 

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 18th of July.

London in the summer is my favourite. I was down today for the summer reception of the APPG for stem cell transplants at the Houses of Parliament.

I got to New Street about lunchtime, bought myself some food and coffee, and went to sit in the assistance office. They got me on the train nice and swiftly, and I settled down listening to some empowering tunes to get me pumped for talking to MPs. At Euston, of course, they were late to pick me up. They might have been just within the 5 minutes but I was bored and had to pee so got the chair off myself. Had an awkward moment at the disabled toilet where the man with the key tried to stop a woman and her daughter going in only to be told that the daughter was blind. Ergh.

I went to get another coffee, and although it was early, I thought I might as well just get my cab to Westminster, just in case there were delays because of security or whatever. I had a very perky taxi driver, who I educated about stem cells, and he ended up dropping me off quite a way up Whitehall, because otherwise we would have sat in very slow traffic while the meter ran up. So I beetled down the road in my chair, trying to avoid people and not get blinded by the bright sun. When I arrived at the visitor entrance, there were only a couple of people ahead of me, and they just x-rayed my bag and patted me down. No weapons here. I carried on through to the main entrance hall, and it was only quarter past three. The reception didn’t start until 4. Oh well. I texted Cassie from Anthony Nolan to let her know I was there, and proceeded to twiddle my thumbs. I didn’t have to do it for long, as I soon saw Henny and Richard from AN arrive, so then I had people to talk to, and they found someone who could take me to the terrace pavilion an accessible way.

When I got there, I saw Cassie and Simon, and met some other members of the team who I’ve heard of or talked to but not met in person before. They were still setting up, so I just watched and talked people as they arrived. As it got to 4, people began to trickle in, and before we knew it, it was really rather busy. I actually didn’t end up speaking to any MPs, except Mark Tami, the chair of the group, as it happened. I talked to several people from Anthony Nolan, and other patients or supporters. Emma, one of the other young ambassadors, was there, so we talked about what’s been going on with both of us and had our photos taken, then I spoke to a girl with an interesting connection to me and obviously an incredible memory – she met me when I was in YPU with Alice and Vicky back in 2010/11 (I think that’s when it must have been), as she was a friend of Alice’s. She was there today with another of her friends who’d had ALL, so we had a good conversation about relapses and getting leukaemia tumours. Then the last people I really talked to were a girl called Amy and her friend – Amy set up the change.org petition to reverse the decision to not fund second transplants when her friend Sasha had to fundraise to pay for hers. Only after she started paying did the decision change.

Before I knew it, it was 6 o’clock and time for us to go. Cassie found a man to take me back out, and once I’d escaped the labyrinth, it was time to find a cab. Last year, nobody was willing to come to Whitehall, so I decided to drive up the road for a bit until I could find somewhere suitable to get picked up. I ended up getting all the way to Shaftesbury Avenue, and eventually stopped at The Palace theatre. I was bound to get a taxi round there, so I used the mytaxi app and a chap came to pick me up. It didn’t take us long to get to Euston, so when I arrived, I had about an hour before I had to go to assistance. I bought a sandwich and a drink from M&S, a couple of magazines for the train, then in WHSmith’s they were doing buy one get one half price on some books. There were two that I wanted anyway. I am awful.

The 19th of July. 

Tired. Took me hours to fall asleep, and I’m a bit floopy today. Got up at half nine, and most of my morning was spent writing about yesterday. It will be a long entry – always is when I go on a trip, so probably another tomorrow. 

This afternoon, we caught up on The Handmaid’s Tale from Sunday, then two episodes of Criminal Minds: Beyond Borders. Then I went through to the kitties, as I didn’t really see them at all yesterday. I watched two episodes of Orphan Black, and they slept on opposing windowsills. I got Bree to purr again! She likes what Betty likes – having her chin scratched. I will make her friendly. Or at least not terrified of people. Christine is coming back with us tomorrow, so she’ll meet her and that will be a good test. Hopefully she doesn’t run away. 

The 2nd of August.

The one day I’m actually able to sleep past eight o’clock, I got woken up by Mommy at ten past because she’d got me an appointment with a different GP at twenty past nine. We decided to go back because of the gabapentin causing me breathing trouble, so it needed changing. Because it was for this reason, I didn’t mind being woken. I got up and dressed as quickly as I possibly could, and had time to eat my cereal but not have coffee before we had to go out. 

Dr. Carter was a very sensible and reasonable person, and she actually listened to what I had to say. After some chat, she just asked what I wanted. I said morphine or oxycontin, so we decided on oramorph. I have to taper off the gabapentin first, so I’ll start it four-hourly on Thursday. Hooray!

Came home to have coffee and give the kittens breakfast. I spent the rest of my morning writing, and anxiously checking my inbox for replies from some people I sent my piece about second transplants to. 

After lunch, I watched the third episode of Mr. Robot, so I’m caught up on what’s been shown, and had just started one of Fringe when Sheila rang to tell me about a potential adopter for Nola. We went through all the information, and had got to the end when she was recanting a conversation she’d had with the woman, said the name of the kitten she’s interested in, and it isn’t one of mine at all! Whoops. At least she realised before I phoned the woman; that would have been very confusing. 

After we hung up, I have started on the cookie jar cat, and I’ve had responses to both the emails I sent which I am 90% happy with so it has been a positive day!

The 3rd of August.

It was not a good night, and the day has not been much better. I was really cold in bed, having to pull up my blanket over the duvet to be warm enough. In August. I despair. 

I woke up ten minutes before my alarm, which was set for half past seven because I needed to be at the (new) dental hospital for 10.35, but we had to leave the house earlier than we normally would because the cricket was on today and Edgbaston Cricket Ground is right by the dental hospital, so we thought parking opportunities would be scant. This turned out not to be the case; there was plenty on-site, so we were really early!

I checked in and we went to sit in the assigned area to wait for my name to be called. We both got decent chunks of our books read, and not too long after my appointment time, I was called in. Through the doors and down the corridor to the booth on the end, where I met a new dentist called Dev. We ran through my drugs and talked about how I’ve been, then he had a look in my mouth. There is an ulcer on my tongue at the back on the right, but we didn’t think it was massively problematic. He went to get Mrs. Richards to check, and she actually thought a steroid injection was necessary, just to give the ulcer a hand in moving on. This was a surprise to us but I wasn’t opposed to the idea. Dev got another dentist, a chap I have met before, to help him. He put some local anaesthetic into my tongue, but the first lot didn’t seem to have any effect, so he had a second go, and that one I felt. My tongue then went numb and swelled up as it should have, and then the steroid was injected into the ulcer. I am to go back in six weeks. 

As we drove home, I had to ring Grandma with my huge tongue and explain to her that we had left and Mommy would be with her as soon as possible, because they were supposed to be going to a funeral and time was being squeezed. 

We decided to actually pick her up and go straight to the church, where I would go home from in my wheelchair. However, when we arrived, it emerged that Grandma had a very enlarged leg and a potential DVT, so she was not going to this funeral. We went home, Mommy sorted out her stuff and went back to Boldmere Court to take Grandma to A&E, as the GP was going to take too long. 

I had to wait a good couple of hours before my tongue had gone down enough for me to be able to eat lunch, which I managed to make but my back did not make it easy as I had to go down to one gabapentin today. Like being constantly poked in the back with a cattle prod. 

The post arrived, and there was a letter for me from Andrew Mitchell, my MP, in response to my email regarding Anthony Nolan’s campaign to not withdraw funding for second transplants. He was not interested. He feels that they’re not cost-effective, not good value for money for the taxpayer. I was a waste of money. He also wanted to let me know just how much the government has done for the donor registers, which is all well and good but pointless if we’re not able to use those donors for their matches. So then I spent the rest of my day trying to write something about it. It was hard. 

Mommy got home about teatime. Grandma’s blood test didn’t show a DVT but that’s not 100% reliable so she has to go back for an ultrasound tomorrow. 

Morphine in the morning. Hopefully I don’t throw up.

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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The 25th of July. 

Well, I have some drugs. Not the ones I hoped for, but I have to try these first before I can get anything stronger. 

We rang up first thing this morning, and when Jo, the clinical nurse specialist we spoke to, rang back, she said to come in at 1pm to see a doctor. I then kept writing about Saturday until 11, when we went into town before going to hospital. 

I desperately needed to replace the ballet pumps I’ve been wearing – they are nearly ten years old and literally falling to bits. Topshop didn’t have a pair in my size, so I went to New Look, where I ended up getting the same ones in three different colours. Sorry Phillip Green, none of my cash for you. I also picked up some trivial stuff like moisturiser and birthday cards, then lunch from Pret which we ate in the QE car park. 

Up on 621, I waited over an hour for the doctor to appear. That was fine because I’d taken my diary so I could finish my writing. I got that done, then twiddled my thumbs and listened to music until I was called.

We had a chat, and she did some poking although to be honest that doesn’t really make it any more obvious where the pain is; it’s not muscular so it’s not tender. Just constant ache, made worse when I move at all. The strongest drugs she could prescribe were slow release double strength Tramadol, so I have to take that twice a day for a few days and see if it makes a difference. I’m honestly not expecting it to, but we’ll see. 

We had to wait in pharmacy for ages because there was a palaver over the fact that it’s a controlled drug, but we were able to leave at about half three. When we got home, the kittens were ravenous, practically chewing my arm off. I did apologise profusely but they don’t care. They got food; they’re happy. 

Tonight, I’m trying to get the video I made yesterday seen. It’s on YouTube, Facebook, Twitter and instagram, and I am begging everyone to share it with their followers. I want Jeremy Hunt to explain why he’s arbitrarily chosen this group of people who apparently deserve to die. Why he’s basing this decision on research that is 20 years old and has no plans to use current data or get any more, despite us constantly improving the science behind the transplants. Why he feels prosthetic penises are more important than the lives of people with cancer. What gives him the right to extinguish the last remaining hopes of people already going through more than he ever has. It is a privilege to be the health secretary yet he treats it like a game, and he gets to play God. 

The 26th of July. 

Terrible night. I barely slept at all for no discernible reason. The pain wasn’t unbearable for once, I wasn’t too hot, my brain just wouldn’t go to sleep. In the end, I started watching Stranger Things on Netflix and I am gripped. Loving it so far. 

I got up just before nine, and washed my hair for the first time since it was dyed. I wouldn’t mention it, but it had a slightly alarming effect. Because the colour is so vibrant, the water and shampoo made the dye run, and when I had dried my hair, Mommy noticed that most of the back of my neck had been stained pink. I was really glad James had let me in on the tip of milk being a great stain remover. Worked like a charm!

My day has been talking and writing. I got an email from a journalist from the Birmingham Mail wanting to talk about my video, excellent! Before I got back to her, I spoke to Simon at Anthony Nolan to make sure I had all the points I needed to cover. The writer, Anuja, rang me as soon as I replied to her, so then I talked to her and that should be in the paper very soon!

After lunch, I spent most of my afternoon uploading photos from the games on Saturday and writing because I am behind again. I’m not quite finished because I then got another interview request but it was email questions, so I stopped the blog-writing to answer them all in probably far too many words. I suspect I will be edited considerably. 

I am so tired. Sleep tonight please. 

The video is here, please watch it and share it with your friends.