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The 15th of August. 

Quiet day in the Cartwright household – I’m on my own because Mommy and Daddy took Grandma up north to see Aunty Audrey, so it’s been a day of carbs, crochet and crime drama. Well, only a little bit of crime drama but I enjoyed the alliteration. 

This morning I did a blog post and watched the last three episodes of Glow. I finished off the little teddy, but because the wool is mainly pink, it looks more like a pig than a bear. 

I sorted myself out some lunch, and had got engrossed in trying to de-pig the bear when the doorbell rang. I had a chap coming to view Betty and had completely lost track of time. I let him in and took him to see her – very much your average viewing, as she is an excellent kitty and showed herself off to the best of her ability. They’ve had a cat for twenty years so I know they can look after one. Just got to confirm, but I’m pretty sure we’ve found Betty a home!

Since then, I have been trying to write a blog post for tomorrow. It will be ten years to the day since I was diagnosed with leukaemia, since this all started. What a decade it has been. 

The 16th of August. 

Happy 10 year anniversary to me!

It has been a lovely day. I had a good sleep, woke up at an acceptable time, and had my breakfast and coffee while I put together a blog post about the day. I put my new charm on my Pandora bracelet, which I think we can now say is full. Convenient – ten years is a nice round time to stop. 

I wanted to make cinnamon buns, so when Mommy got back from Grandma’s, I printed out a recipe I’d found to make them in 45 minutes and we gave it a go! To be fair, Mommy did most of the work, and I did the easy bits, like sprinkling the cinnamon sugar all over the dough. When they came out of the oven, I poured the icing over the top, and let them cool while we ate our lunch. We tore them apart for pudding and have to say, they have been a success!

This afternoon, I went to Black Sheep to get my hair dyed. I had taken inspiration from Love Symbol #2, the colour Pantone released to honour Prince, and mixed it with a dark teal. I have unintentionally matched my glasses and sunglasses. No bleach today, so it didn’t take very long, so there was time to come home and get changed before going out for dinner. 

We went to Water’s at Resorts World, because we’ve known Andy for a long time and know he doesn’t do weird food. I ordered a peach and passionfruit bellini, and set about perusing the menu. I decided to go for a saffron risotto with chorizo and deep-fried squid to start, and a marinated duck breast with spring onions, creamed potato and pak choi to follow. While we waited, we were given tiny tomato soups as an amuse bouche which was delicious. I love bonus food. My risotto was really good, although quite filling, so I had to leave more than I would have liked because I had more food to fit in. I was very glad I did, because my duck was excellent, soft and pink, and I’d been worried that it might have been spicy but I had no trouble. At this point, I had to stop – there was no more room in my belly. I think if we go back I’ll skip the starter and have a dessert instead because Mommy and Daddy were both delighted with theirs. 

I’m very tired and very full and very grateful to be alive.

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 20th of December. 

I am home! Ohh so happy to be back where I belong. 

Last night I wore earplugs which helped me sleep a little longer this morning, although any remaining tiredness was very quickly shaken off when the woman next to me shat the bed. The stench. 

Different consultant but same junior doctor today, and I said I was pretty much losing the will to live waiting for this scan. I also explained that regardless of the outcome, I would be discharging myself today because I could not spend a fourth Christmas in hospital (and I did a small cry). The consultant was very sympathetic and instructed the junior to hassle ultrasound about getting me scanned asap, and having all my drugs and paperwork ready to go. 

A haematologist came to see me with the thought that I might have a fungal infection, and he wanted me to have another kind of scan, but the consultant above him felt that was not necessary, thank god. 

So then all we had to do was wait for ultrasound. A woman turned up shortly after two, and proceeded to scan me right there in my bed! Once again it was commented upon that I am lovely to scan, and having covered my right side in gel, she found no evidence of a clot. Obviously we informed the doctor of this immediately and by three we were out of the door. Just a tiny visit to Pandora on the way home to get the charm for yesterday’s anniversary, and now I am at home in our living room. I have petted the kitties and tonight I am out at The Glee for Joe’s Crisis at Christmas gig. 

I’m just SO HAPPY. 

The 21st of December. 

Sleeping in one’s own bed does not get old, let me tell you. 

I had lots of fun last night – Joe’s friend Ben who I met the other day was sat in front of me, with Jess Phillips (MP), and they were both amazed by my mug of sausages. I pointed out that they too could order one, they are always available. 

I went into the dressing room at the interval and at the end, and got to spread the Anthony Nolan word some more. We also had some chats about which was the best gay Christmas pun, and wondered whether Sara would make it. They were all lovely and really funny; will definitely make an effort to see them again. (On the bill we had Joe and Sara, Guz Khan, Fin Taylor, Andrew McBurney and Mo Amer.)

Today I finally finished my wrapping, watched Elf and decorated our tree. Daddy came home with Christine while I was mid-tree, so she helped me finish. My right arm is still huge and I’m coughing but I’m trying not to care. I’m okay and I’m home which is all that matters. 

Today is eight years since my liver transplant. Back then, nobody thought I’d even see Christmas, yet now I’ve had eight more. At what should be the best time of the year, my donor’s family went through the hardest thing I think there is: the loss of a child. But they were selfless enough to know that they could stop another family feeling that pain, and they gave us that. A Christmas miracle. 

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The 16th of August.

Today is nine years since I was diagnosed with leukaemia. I still remember it like it was yesterday. Mommy, Daddy and I were taken from my bed space on Ward 9 to the nurses’ staff room, the only private place, to sit down with my doctor, Mark Velangi. He told us that from the tests they’d done that morning (a bone marrow trephine and lumbar puncture), they had found leukaemia cells in my bone marrow. I looked at the wall and started to cry. 

Today has been very different. We didn’t get off to a great start, finding just before we went out that my chair was still in Daddy’s car. Then, when we went to collect it from him, he was late in appearing, which made Mommy late for her blood donating appointment. They wouldn’t let her donate in that session, so she was going to have to go back at 12.30. To kill time, we had coffee at Joe and the Juice, then browsed in Foyles until she had to leave. I bought three books that were on offer: The Invention of Numbers by Peter J. Bentley, Cat’s Cradle by Kurt Vonnegut, and The Man in the High Castle by Philip K. Dick. Then I had a bimble round John Lewis where I looked at wool which I liked but had no use for, then got two cute cat pins that were reduced and a Levi’s shirt that was on sale too! By that time, I thought Mommy would soon be finished, so I went to find a table in Crêpe Affaire, where we were going to have lunch. It didn’t take her long to arrive, and soon we were having tasty pancakes. I had a crêpe florentine, she a superveg and they were really good. On the way to the car, I bought a Nutella doughnut from Krispy Kreme to eat at home. 

That too was incredibly delicious, not too much filling which I like or I find them a bit sickly. And apart from eating that, all I have done is crochet because that is what I do. 

The 17th of August. 

I have stopped reading my book at a critical moment to write this. Like, a child is about to get shot. Or not. Hopefully not. I’ll find out soon, but it’s 6 o’clock and therefore writing time. 

It’s because of clinic this morning that I’m so far into the book now – just over halfway through. We sat around in the exceptionally busy waiting room for two hours before Ram called me in. I wasn’t in with him long, just updated him on all the pain relief I’ve had and he suggested that we just wait for me to see Mr. Harland before doing anything else. I wonder if I ask the chiro, whether they can get him to chivvy me up the list a little? Although the MRI will have to be reported on first. Anyway, then he prescribed all my drugs for the next three months, and we went to sit in pharmacy and wait for those. 

On the way home, we went to get some toothpaste and hamster food (from different shops), and I saw a small girl carrying a pug puppy in her arms and it was so hard to not rush over and wrestle it from her. So. Cute. 

I have spent the rest of my afternoon crocheting and reading. There is not a great deal on the Olympics tonight that we want to watch so I will probably get through a lot more pages then. 

The 25th of January. 

Well, the oxygen idea didn’t work, so tonight’s plan is to add my third pillow back in because that’s also changed. Hopefully I will wake up tomorrow with a tongue that doesn’t feel like sandpaper. 

Finally got Suzi’s parcel sent off this morning, First Class, so that should arrive tomorrow. I also did a blog post and wrapped myself in a blanket because it has been freezing in my house and I cannot cope with it. 

I had an email from Superdry saying my jumper was in so after Mommy had taken Grandma to the doctor (she’s got antibiotics) and we’d had lunch, we went into town to pick it up. 

The chap in the shop actually offered to open it up for me to check the contents and it was the correct thing in the right size, so that was all very pleasing. Last week, they gave me a card that said if I spent £75, I’d get £25 off, but I couldn’t find anything else I wanted. There wasn’t anything else we needed to do in the area so we came home again! Probably one of the shortest town trips ever. 

I called Piccadilly Opticians today to book an eye test. I’m really quite concerned about what seems to be a sudden deterioration of my vision. Thursday afternoon. 

The 26th of January. 

The extra pillow worked. How weird. Sleeping propped up I breathe better? Might ask Dr. Thompson about this. 

I didn’t have a good sleep – I woke in the middle of the night having had a dream about getting a spoon stuck in my oesophagus horizontally (impossible I know but dreams aren’t logical). I had to work very hard to distract myself from thinking about it to go back to sleep. 

Today is my parents’ wedding anniversary – 36 years. I came downstairs this morning and saw Daddy’s card, which he’d only seen of when he went to write it and found it said Happy Birthday! I can understand his thinking because from the front, it could be an anniversary card. Never mind. I am waiting until he comes home to give them their card. 

I got on the scales this morning for the first time in a fortnight. I still weigh myself regularly, I can’t let go of it. I was exactly the same as two weeks ago, so my days of birthday excess have had absolutely no effect. That’s a good thing, because I’m nowhere near ready to be getting back in the gym yet – I made my own lunch today and was becoming breathless by the time I was plating up. Everything is still such an effort.