Archives For leukaemia

The 15th of August.

Such a long day of travelling and oh my back hurts so much.

Off to Wales to see Taid! Set off just after nine, and I spent the whole journey listening to the Hidden Figures soundtrack and reading The Beautiful Cure. When we arrived, Taid was wearing a very jazzy orange shirt. Apparently he has two more in the same pattern! He is full of surprises. Anyway, we let him finish getting ready, then we went to a pub for lunch (not the one in Conwy so no dogs).

It was quite a nice place, and I ordered a “light bite” of fishcakes which ended up being incredibly filling, so what a full meal might have been I dread to think. It was good though! No complaints from me. That might have been different if I’d had a coffee like the others – they came with squirty cream instead of milk and was apparently disgusting.

When we got back to his house, Mommy and Daddy did his washing up, and I made a space in the living room amongst the piles of post so I could sit and do the puzzles in the Telegraph.

We were on our way back in good time for once, so we got home about seven. I love my comfortable chair.

The 16th of August.

Today is the 11th anniversary of my cancer diagnosis. It’s been a good day.

I was up early again because I had clinic with Andrew. I wasn’t sure how he was going to react to my arm because last time I saw him, he said he didn’t think I should have lipo. Thankfully, he was delighted! I think he is just happy that I am fixed. He’s still confused, but he said I made his day so I’ll take that.

Went into town for anniversary treats. I got a new lipstick from Huda Beauty, a cruller from Krispy Kreme, and The One Who Wrote Destiny by Nikesh Shukla from Waterstones. While we were in there, we saw Mr. Tobin from Hallfield! That was a lovely surprise. He doesn’t age, I swear.

This afternoon, I have had a lovely time starting a baby blanket and watching House. I even got some early strokes in with Dolly! She doesn’t usually allow that until the evening. I’ve also been getting lots of nice comments on a poem I have written about this day. I can’t remember the last time I wrote anything vaguely resembling poetry so I wasn’t sure how it would be received by it seems that people like it!

We are having venison for tea. Happy.

10 years of remission.

July 30, 2018 — 5 Comments


I imagine death so much it feels more like a memory

When’s it gonna get me?

In my sleep, seven feet ahead of me?

If I see it comin’, do I run or do I let it be?

Is it like a beat without a melody?

See, I never thought I’d live past twenty

Today marks a decade of being in remission from cancer for me. It is the tenth anniversary of my second stem cell transplant, the date that I received the cells that finished the process of obliterating the leukaemia. Only 26% of AML patients reach five years of remission, so considering I have doubled that, I should be celebrating, right? People think that being in remission means that you are fine, that it means the ordeal is over. I am not fine. I am so far from fine. I am physically and mentally broken. And, in the past six months, I have become totally preoccupied by the notion of my death.

I suspect my body’s reaction to the transplant and everything that happened afterwards probably means that my cancer is incredibly unlikely to return, but that is not what I am worried about. The lung disease that I developed in early 2009 has been steadily reducing my lung function since then, leaving me with just 23% after I became ill with pneumonia last year, and my right lung collapsed. Every activity required time afterwards to catch my breath, and by activity, I mean putting on an item of clothing. I mean brushing my teeth while sitting down. I mean rolling over in bed. It was terrifying, and the only thing that got me through each day was knowing that I would get better. I spent every hour waiting for night because I was a day closer to improvement. I am never allowed to have a general anaesthetic ever again because my lungs would not be able to support me afterwards. I am one accident or infection away from grave danger.

Struggling to breathe in the dark is like being buried alive.

Being legitimately breathless is petrifying. I don’t mean the out of breath feeling you get when you’ve just legged it for the train and leapt on as the doors are closing. True breathlessness feels like you are suffocating. It feels like you will never breathe normally again. It is the mental fight between the two halves of your brain; one wanting to panic and hyperventilate, and the other having to force those thoughts back down because that will make it exponentially worse. It’s climbing the stairs, knowing there is an oxygen cylinder at the top, attaching the specs to your face, having four litres per minute stream into your lungs, yet not being able to close your eyes to concentrate because struggling to breathe in the dark is like being buried alive.

And I’m so afraid. I’m afraid of the point in the future where I’m trapped in a body that won’t cooperate with my mind. It still refuses to resign itself to the facts of how little I can do. In my dreams I can still dance. In reality I can’t get through a verse of a song. My brain doesn’t want to recognise that, the way Nigel Lawson doesn’t want to acknowledge climate change. Welcome to Denialtown. Population: Me.

I have felt like a burden before.

I am not afraid of the act of dying itself. I don’t want to die in a hospital but I think I probably will. I anticipate that if it is some strain of infection, as is most likely, then I will fade away, somehow, and the machines will stop beeping because my heart has stopped beating. Maybe that is just a romantic notion and it’ll actually be violent and distressing but even so, it’ll be over, and I’ll be gone. No, what I am scared of is what will go on around me, before and after. In the before, if I become terminal, and we have to live with the weight of that sadness…I don’t know how to be the person that gets lost. When people I love have died, when I knew they were going to die, having to leave their side knowing I would never see them again felt like tearing off a limb. How do I be the person that is said goodbye to? Perhaps it is telling that for all my talk of being realistic and practical, I still haven’t planned my funeral.

Because that is the after. At least prior to my death I can still hold my mother’s hand to try and comfort her. Afterwards I’m just a memory. A ghost haunting everything I leave behind. A sudden reminder in something they know I would have loved and the searing pain in the remembrance I will never experience it. I know that grief isn’t linear, that it follows you around and blindsides you at two o’clock on a Wednesday afternoon. It punches you in the gut. And I am scared of the overwhelming guilt that comes as the free gift with the awareness of your impending death. The sense, however illogical, that I will be the cause of such anguish, and the sheer powerlessness of the lack of ability to change that. I have felt like a burden before and the gravity of my depression rendered me barely able to speak. I don’t want to go back to that place.

Nothing in this world that’s worth having comes easy.

Most of all, I’m scared it will come before I am ready. The dangerous thing about staying alive all this time is that it has tricked my mind into believing that I’ll just keep going. Because of that, I keep making plans, putting things off, living the only way I know how now. And I really love it. I am so lucky. I have the most phenomenal family, who support and take care of me no matter what. My friends are kind, smart, magnificent human beings who treat me like a normal person, and it gives me so much pleasure to watch them achieve such great things. I love the comedy gang, catching up before shows, seeing their new work, cheering them on as they make waves. I love the cat fostering, being able to nurture them into happy animals that go to homes that will love them for years, and the friends I’ve made through doing it. I get a huge amount of satisfaction from crocheting all the things, because I can make anything from scratch and share them with people, and hopefully they’re lasting tokens of me. Finally, I love it when I am able to use what has happened to me to make changes for people like me in the future. Whenever Anthony Nolan ask me to speak, or I get to talk to the press, or somebody new tells me they’ve signed up to be a stem cell or organ donor because of me, that is everything, because that is potentially a life saved. And I want to stay here with these people, doing all these things and more. I’m never going to be finished. I’m never going to be ready. I’m really sorry for all the loose ends I’ll inevitably leave behind. You know how I hate an ambiguous ending.

But I can’t help feeling like my expiration date gets nearer with every year that I keep defying the odds. It’s coming, and when it does, I want to know I meant something. If I leave anything behind, let it be the way to stop this happening again. Keep recruiting new donors, keep telling people about my case, keep believing that things can change. Find a way to fix lungs without the need for a transplant. Save someone else from pain. It won’t be easy, but in the words of Dr. Bob Kelso, nothing in this world that’s worth having comes easy. It hasn’t been for the past ten years, but the good parts have made it so worth it. So when the inevitable does come, and the choice is between the easy thing and the right one, know that you have the strength to do the latter. I have been told a million times of my resilience. As long as you keep me alive in your heart, you’ll have it too.

The 18th of July.

I love days like today. I live for them.

I went to London for the annual summer reception for the APPG for stem cell transplantation at Parliament. The journey down there was pretty uneventful; I just drank my coffee and listened to Surf Music by Paul Williams (thank you James Acaster for that recommendation). The assistance people were pretty timely upon my arrival for once, so I got out of Euston and made my way to Albertini, where I was meeting Laura for lunch. We have been friends for yonks, since we were both on LiveJournal about fourteen years ago, but have never had the opportunity to meet. I thought, seeing as I was going to be in town and she works near Euston, it was an ideal time for us to get together. She was already there when I arrived, and we got seated and set about picking our meals. I went for a pizze bufala (basically a margherita but with big blobs of mozzarella and extra basil) and she had mushroom pasta. We did a lot of complaining about the government, especially Boris, the Love Island recruitment process, what she does for a living, what I do instead of making a living, plus what I was going to be doing this afternoon. It was only a shame that we didn’t have longer, but she had to get back to work and I was supposed to leave about an hour to get through security at Westminster, so we said goodbye with a promise to do it again when we have more time.

I beetled up the road to St. Pancras because it was the closest taxi rank, and managed to poach a cab that had just dropped someone off. He took me down, and was able to stop the closest to where I needed to be, out of the three times I have made this journey. It turned out I didn’t need huge amounts of time to get through security, because a woman sent me down a different ramp that bypassed the queue, so I just popped my bag in a tray, negotiated the metal detector, and got gently patted down. I got into the main entrance, where I expected to have to twiddle my thumbs for the next hour. However, they had a small but interesting exhibition about women’s suffrage, so I looked at that, then found some Anthony Nolan people at the other end and we found some very agreeable members of staff to get me to the terrace pavilion via the accessible route.

When we got there, we weren’t quite allowed in yet, because they were still setting up the cakes and stuff, so we had to hang around in a little vestibule until we were able to enter. Once enough of us had arrived, whatever cordon was in place seemed to be lifted, and we were able to spread out. I said hello to everyone, then sat for quite a while with Laura, who works with Lucy (who helped me with the gig), and we talked a lot about carbs and the gym and stray cats wandering into our houses.

This year I did want to make a point of talking to more people, because for the past two, I have ended up only spending time with one or two and just talking to them for ages which is nice and all but I thought I would make a change. I made a beeline for Simon Bostic, who was the first ever recipient of a stem cell transplant from an unrelated donor. It was because of his story and his mother’s campaign to find a donor that Shirley Nolan was inspired and began what we know to be Anthony Nolan today. I wanted to find out more about him, and his life now, and (maybe rather egotistically of me) thought he would be interested in meeting me, as the first recipient of a completely unmatched donor. He and his husband were pretty shocked to learn the story, but once we’d got through that, we talked more about after effects, and how a transplant isn’t a magical cure, and chronic lung disease. His capacity is worse than mine, but I think his gas exchange is better because he is able to stand up and talk simultaneously, which I cannot do without getting breathless, even with oxygen. Lungs are weird.

Suddenly, out of the corner of my eye, I spotted someone that looked familiar. I turned to look, and to my utter delight I saw Manos! He was a reg at BCH when I relapsed, and was there all through the transplant and bad GvHD. I can’t remember exactly when he left, but he was then at the QE when I transferred there, and now runs the haematology/transplant department at Heartlands. He seemed equally thrilled to see me, and we had a massive hug and started reminiscing. I caught him up on how I am generally functioning now, and he told me about the developments on the ward where he works, and how he thinks about me when people want to give up on a patient, but he refuses to because he has seen impossible things happen. He gave an example of a patient that he has not forsaken even though everyone else wants to, but now that guy has gone to Israel to have a drug that he couldn’t get here, and now Manos is going to give him a transplant that means his children won’t lose their dad. Then he introduced me to Prof. John Snowden, Chair of the NHS England National Specialised Commissioning Clinical Reference Group (CRG) for BMT, who was one of the speakers. He’s also interested in people who’ve had solid organ and stem cell transplants, so we could have talked for a long time. However, he couldn’t chat much because he had to talk to the organisers about his speech and how it was going to run. My fellow transplant recipient and journalist friend Hannah was there, so we got to hang out again which was lovely, and I met Lisa Nugent, the head of donor recruitment for DKMS along with their head of PR, Nigel. We went to get drinks, and were going to continue our conversation when it was time for speeches. Mark Tami MP said a few words, then introduced Prof. Snowden. He talked about how long the NHS has been doing stem cell transplants, and about how we still have so much more to do, especially in our efforts for BAME patients, whose chances of finding a donor are monumentally worse than those of white, Northern European heritage. He also spoke about how the NHS is always at the cutting edge of transplant science, and what is being done with CAR-T cell therapy. Then he introduced Simon. He spoke about his mother’s efforts to find him a donor, to save his life, and to save her and other parents from the agony of losing a child when their death is preventable. He also talked about how magnificent the NHS has been in continuing his care after transplant, right up to this day, because the transplant is not the end. But hopefully it will be better for our final speaker, Farida Dedes. She was a student at Brunel, and became ill at the end of her first year. She was diagnosed with ALL, and was told she was headed straight for transplant, if they could only find her a donor. They really struggled, because she is black, and eventually she was told that they were going to give up searching, because nobody could be found. However, a month later, a donor popped up in Brazil. Amazingly, she donated her cells, and Farida had a successful transplant. She is now back at university, and will become president of the Brunel Marrow group next year, with the aim of really highlighting the necessity of adding more BAME donors to the register, because she knows first hand how devastating it is to be told one can’t be found.

I found her afterwards, because I identified with a lot of her story (mainly the sudden diagnosis and immediately living in hospital, and the need for transplant straight away) and we talked about having your life kind of ripped from under you like that. We were joined by Max Tami, the MP’s son, who also had leukaemia, but I know has also had issues afterwards. I think it was good for him to meet some people who understand.

We were then warned about the fact that it was nearly time to go (the people at Westminster are really arsey about you leaving the room literally as soon as the event has finished), so I made a move to say goodbye to people. I made sure I hugged Manos again, and got a photo with Simon to document our historic meeting. Then we started getting kicked out, except I couldn’t leave and nor could Simon (from Anthony Nolan) because he had a big thing on wheels that needed ramps too. They dicked about for ages, and only after half an hour of us getting frustrated, did the man in charge finally decide to get useful, mainly because I think he was worried we would wander off to places we weren’t allowed.

By that time, traffic was pretty bad, and I knew it was going to be impossible to get a taxi nearby anyway, so I started heading up Whitehall with the intention of finding a reasonable place to get a Hallo from. However, everywhere was too busy/inaccessible, and the route back to Euston was fairly straightforward, so I ended up just bombing my way back there, straight up Charing Cross Road, then right onto Euston Road, arriving at the station just in time for the platform announcement. I quickly bought a drink, a cookie and a copy of New Statesman, then met the assistance chap at the train and was on my way home.

The 19th of July.

That has been nowhere near as interesting as yesterday. I gave myself a little lie-in, although I am still tired this evening, got dressed, had coffee, breakfast. I started writing about yesterday, such has taken me all day, on and off.

I took a break so we could wash my hair, and I had to get changed, because the dress I had put on its currently too small. I’ve put on a couple of inches around my waist and I would rather they were not there, so I’ll have to get back into the gym.

We had lunch and caught up with Love Island (what a massive hypocrite Dr. Alex is), then Mommy went to Grandma’s and I sat with Dolly, trying to concentrate so I could finish writing. She was actually out this afternoon, sitting on the windowsill, so I occasionally chatted to her, and gave her some Dreamies.

When Mommy got back, she found some wet stuff at the bottom of the stairs, so she went up to investigate, and found a magpie freaking out in Christine’s bedroom, shitting everywhere. Thankfully she was able to get it out of the window without getting injured. Excitement, but a visitor we could have gone without.

When that was over, I went back to Dolly, and I got to stroke her! Finally reached that stage again. 

 

The 9th of March.

This morning was infuriating, but this afternoon was rather serendipitous and enjoyable.

I was annoyed because I was waiting for a delivery of part of Mommy’s Mother’s Day present from DHL, but they don’t give you a delivery window, just say “before end of day”. This meant we couldn’t go out for me to have a look at Wyndley gym and then to get Easter eggs until they had come. I hoped it might come this morning, so we could go good afternoon, but no.

After lunch, I went upstairs to apply some face, and the doorbell rang, but it was just the postman. So I changed my delivery to a pickup point, and now I’m have to get it from a mini supermarket up the road, probably on Monday. Stupid DHL.

Then Mommy took me Wyndley so I could talk to someone about membership. I met with a young woman called Kirsty, who showed me round the facilities. Downstairs is all free weights, then upstairs is resistance machines and cardio. I climbed the stairs and they weren’t too bad, I just had to get my breath back. We were chatting and she complimented me on my hair, which brought up the leukaemia and it turned out she had ALL six years ago so then we couldn’t stop talking about all the things we had in common. I’ve got a free trial until the end of the month, an appointment with a trainer to set up a plan, and a new pal!

The 12th of February.

Where to begin? I have been reluctant to start this because I feel like it might dilute the memory or I’ll forget stuff.

The journey down was nice and straightforward. The chap was even there with the ramp when we arrived at Euston! We got a taxi to Jen’s in Highgate, where I was going to try on fun clothes in order to find an outfit for the show. I was shown into a little room, one wall full of clothes, one full of shoes, plus a rack of dresses, the floor covered in more shoes and bags and jewellery behind me. First I picked some favourites to try one, because I had to be selective. I looked at four or five in the end, but eventually decided that the first one I’d worn was the best. A navy blue midi dress from Libelula covered in sequins with pink piping, plus some Nadia Vodianova shoes and massive clip on earrings and a two-finger ring. I left with a promise to leave it at the hotel reception in the morning.

We had lunch at the nearby Cafe Rouge (saw so many good dogs), then another taxi to the hotel. When checking in, we each were given a fresh warm cookie, which I ate on my bed very messily. Unpacked, then collected what we needed for the show. Next stop, Union Chapel!

When we arrived, we rang a buzzer and were met by Bea, who works the evening shows. She showed us the backstage/dressing rooms, the facilities, and of course the chapel itself. They had built me a massive ramp to get onto the stage, and I met the sound guys so handed over my old iPhone, plus the cable and power pack.

There was no point going back to the hotel, so I sent Mommy and Daddy to get coffee, then it wasn’t long before the Anthony Nolan team and Christine arrived (separately). I finally met Lucy, then she and her colleagues set up all their tables and banners, and I got changed into my spangly dress. I had a practise run up the ramp, then got talking to lot of Anthony Nolan volunteers, remembering some from previous events. Then the doors opened and it was time to meet my public! For a while, I just watched strangers coming in which was brilliant because they weren’t obliged to come, they were just supporting the cause. Then I started seeing people I knew, like Emmer, Charlie, Denise, Amy, Joy, Lauren and Hannah. Mark and Shereen came over and I gave him a huge hug. I’m so glad he could come. Acaster arrived, then Suzi and Flick, and I went backstage with them. Soon Nish appeared, and before long, it was time to start the show! First up, aside from our lovely host, we had James, during whom Sara arrived, and then Felicity. Nish then introduced me, and I drove up (nearly off) the ramp onto the stage, giving a royal wave. The cheer was immense, and I had to tell them to stop because I was going to cry. I said most of what I’d planned, plus I gave Mark a shout out because he deserves to know what a hero he is. In hindsight, there are things I wish I’d said, but no matter. Everyone said I did really well, and I was happy.

In the interval, I gave Josh the bear for his baby, and met the Anthony Nolan patients who’d come backstage and lots of photos were taken. Josh opened the second half, followed by Suzi and Sara. Everyone was brilliant, it went better than I could have hoped. I said goodbye to the people who had waited at the end, and Nish, Sara and Suzi.

So many hugs. And it was all over. I put my socks and boots back on, and we made our way back to the hotel. Pyjamas, Graham Norton, wind down, bed.

The 13th of February.

I didn’t fall asleep until about three, and woke up at seven. Made myself a cup of tea, and got everything packed back up. I left the garment bag for Jen at reception, then we had coffee next door at Saint Espresso. Breakfast was required, and as it was pancake day, we went to The Diner nearby. We went past The Breakfast Club and its huge queue, but found The Diner nice and quiet, where I had buttermilk pancakes with bacon, maple syrup and whipped honey butter. So good, but I couldn’t finish them.

A last cab back to Euston, where I got another coffee, and we trundled home. This afternoon, I have put all my warm clothes on, curled up in my armchair. So happy.

 

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.