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The 20th of March.

It’s probably going to be another short one, as there’s not much to report.

Mommy is fine today, as are all my muscles, so a gym visit would have been possible, but as I’m seeing Karen there tomorrow, I don’t want to be in pain. Still feeling a bizarre amount of chest pain/heartburn, so I’m going through Rennies like it’s my sole responsibility to keep them in business. Very frustrating.

This morning I typed up a blog post, which I’ve just realised is still in draft form. Never mind. Since then, I’ve been working on the jumper. I have to make sure I pay close attention because I fucked up the stitch count once already and it’s been a struggle to get it back on track. I really want this to be wearable when I finish. I’ve never made a proper item of clothing before!

The 21st of March.

I don’t know how things are with the chest wind today. I had porridge for breakfast in the hopes that maybe it would keep me full and stop it from setting in, but that didn’t really work because I started having the pain about eleven anyway. I did some googling and it could be bile related? I think I will see if it persists for a few more days and if it keeps going for a week I’ll get in touch with the liver team.

Back at the gym today! Karen showed me some stuff on the Synergy station, which was cool. I did some battle rope – as in, one rope, two arms. I’m not quite up to both simultaneously. Then I did this thing where I pull down on a rope that goes round on a loop which was good but also hard! Medicine ball next – hold it at the chest, push out, bring back in, above my head, back down, out in front again and twist from side to side. All slowly. And I did all of these in my chair so I can work these parts of my body without totally exhausting myself and causing myself pain. I also did some medicine ball deadlifts and yoga ball sit ups. Lastly (with Karen, anyway), I did some TRX squats and pull ups. It’s good to have stuff to do that isn’t just sitting on a machine.

That is what I did next – climbed the stairs and followed my circuit round. I was there for about two hours in total so I imagine I’ll feel it in all sorts of places tomorrow. I’m at the dental hospital in the afternoon so I hope I’m able to transfer between chairs without yelping.

Had lunch, then went upstairs to get changed because tonight I’m out at The Glee to see John Robins. Between food and more food, I managed to get a few more rounds of the jumper done. I’ve got about fifteen left and then I think I’m done so could be finishing it this weekend! Let’s hope it’s not a disaster.


The 28th of February.

Had a lovely time at Lefty Scum last night. Josie and Johnny loved the bunny I made for the baby, and the show was so great. Grace Petrie is brilliant; a British Kimya Dawson of our time. The man sitting next to me blew his nose and the woman next to him coughed a lot which concerned me but I do not appear to have picked anything up from them, touch wood.

Today I have been crocheting like mental to get Sara’s spaniel done before Luisa’s show tonight, but now I’m not sure she’ll still be there at the interval because Suzi is leaving straight after her bit to get back to London so Sara’ll probably do the same. No matter, I’ll hold on to them for now.

That is all I have done today, in front of the tv. Had a bit of a Bones binge, and saw the episode of How to Get Away with Murder with the Caplan and Gold party and I think it was the most stressed I have ever been during a tv show in my life. Watching Laurel miscarry in the lift was harrowing. I texted Christine throughout.

The 1st of March.

Not surprisingly, today has consisted of very little. I slept through my alarm, somehow, but not too late. Put on the twosie I got for Christmas and thermal socks, although my toes are still perished. We’ve probably got it the easiest in the country, but it’s still way too cold for me.

So young Mac and I have had a snuggly snow day. He got a bit neglected yesterday, so he and I have watched much Netflix. I got as far up to date with The Blacklist as possible, and the rest of it has been Hemlock Grove. The plot is absolute rubbish and the writing is pretty terrible but hey, my standards aren’t high.

That has been literally it! Bed will be electric blanket on full, two extra blankets, pyjamas tucked into furry socks. Too cold.

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.


Today is World Cancer Day. This time ten years ago, I was feeling pretty pleased with myself. I’d been diagnosed with leukaemia the summer before, and had made it through three rounds of chemotherapy and a stem cell transplant relatively easily. I had very few of the horrific side effects, and thought I’d got away with it. I didn’t know that in fact, my cancer story was just beginning.

I’ve told my tale enough times for it to seem superfluous now. Leukaemia, stem cell transplant, relapse, stem cell transplant, graft vs. host disease, liver failure, liver and accidental stem cell transplant, photopheresis, biliary reconstruction, sepsis, pulmonary embolism, collapsed lung, pneumonia. And that’s just the bare bones of it.

Anthony Nolan found my second stem cell donor. Without them and him, my transplant would not have gone the same way, my body would not have reacted in the same way, and my liver and third stem cell transplants would not have happened. I would almost certainly not be here. Not only did they find me a donor, but they have been a continued source of support after my transplants.

In 2016, their Patient Services Team offered me the opportunity to become a Young Ambassador for them, a role in which I am able to use my experience to benefit other people who will receive transplants in the future. My goal is for nobody receiving a stem cell transplant to have to go through what I have, because although I am still here, it has by no means been easy. I have survived, but at times it has felt like that is all, and to really live is something just out of reach. We all deserve the chance to live.

I am not ashamed to say that sometimes it is very difficult. It is no secret that people with chronic illnesses can struggle with depression, and prior to working with Anthony Nolan, I was beginning to feel like despite doing my best to raise awareness, I was not having much impact, and I could not see a purpose for the life I had. I did not feel the world would notice if I stopped. But now I do. Maybe not the entire world, I am not quite so egotistical to think that, but since I started working with Anthony Nolan, I feel like I have been able to make more of a difference, most of all when I have been with them to parliament to speak to people who can really force change for the way stem cell transplant patients are treated in this country. So not only did Anthony Nolan give me a chance at life, but they gave me a reason to live.

A lot has changed in the past decade. When this all started, I was a teenager, completely self-involved yet oblivious to the fact that I was harbouring a fatal disease. Now, I’m still self-involved, but more out of necessity than narcissism, and only too aware of every horror occurring in the wider world. I would say that is partly down to the technological leaps made in the last ten years (for example, I had a flip phone back then), but also due to my personal growth. I’d say it’s almost impossible to confront your own mortality and not be changed by it.

Most immediately, I learned to appreciate my family. Nothing says I love you like a mother who will get up to turn you over in the night when you’ve lost all your muscle mass, a sister who will donate her own stem cells to try to save your life, and a father who continues to work to support a household alone and spend every minute he can with you too.

I’ve also learned a lot about grief. When you become a cancer patient, you become intimately acquainted with it. I have been to more funerals of friends than I can count, and that is something usually said by people sixty years my senior. It doesn’t get easier. It never hurts any less. Even when you know it is coming, you can try to prepare yourself, but you are never ready. Last year I lost a friend I truly loved and the world is a darker place without him, but I am trying to use each day to make him proud and I am so grateful to have known him, even though grief is the price I pay for the privilege.

And I am have grieved for myself. This is not the life I planned, expected, or hoped for. I have lost people I never got to know – the partner I might have loved, the children we could have had. It was a choice I had to make: lose them, or be lost. I wasn’t ready to leave, so I chose the sacrifice.

For all of it, I think I am lucky. I am loved and have people to love; I have enough bodily function to get by, and to enjoy the things in life I like; I know what is important, and who will be with me until the end of the line. For the most part, I am comfortable, and I am happy. It is not our circumstances that make us what we are, but our choices. I choose to celebrate the life that I have, rather than mourn for what I do not. In a week’s time, I am hosting a night of comedy called Still Standing at Union Chapel with my incredible friends Nish Kumar, Suzi Ruffell, Josh Widdicombe and Sara Pascoe in order to raise money for Anthony Nolan and remember how wonderful life can be. Tickets are available from the Union Chapel website here.


The 2nd of February.

I am tired and can’t really afford to be because Mommy and I are seeing Katherine Ryan tonight and I need to be awake.

It doesn’t help that I’ve been fairly inactive all day and I think sloth begets sloth. This morning, I wrote a blog post, then repainted my nails. Absolutely riveting stuff.

After lunch, I made Simon’s hat while watching Blindspot (still faintly ridiculous). Then I went upstairs to put on my face prior to going out and listened to a podcast.

I emailed Black Sheep yesterday about a fringe trim, but we never finalised a time so I’m going to have to ring them tomorrow.

Anthony Nolan have published the pared down version of my blog, you can read it here.

The 3rd of February.

Late night: tired girl.

I got up a little later than usual, and had a pretty quiet morning. Mommy had bought some cinnamon porridge so I had that for breakfast for a change, and I rang Black Sheep to see if I could get my hair cut (I decided it all needs chopping) this week, so that’s Thursday.

I then made the nose and arms of Simon and attached them to his body, then made a start on the final Christmas chap, Heinz the stag. I made his legs and half of his body, then it was time for lunch.

This afternoon, I spent rather more time upstairs than I planned to. I listened to a podcast, then I was going to put a couple of ringtones on my phone, and do some more gentle exercise. However, it ended up taking ages because the way I had to do it (using Garageband) didn’t work and I couldn’t understand it. Finally, I found a method that worked and could carry on.

I put on the second episode of Black Lightning (yes it is good, I am happy) and did my very lightweight workout on the floor. I felt it after the last one so I’m conscious not to do too much.

The 23rd of November.

Much quieter day today.

This morning, I tried Dr. Blaney’s secretary, but she wasn’t there, and only works Monday to Thursday so I’ll have to try again next week. Sigh. Then we had an interesting time with a Zara delivery – I’d ordered a couple of dresses, and I got an email saying my Hermes delivery person had left my order in a safe place. I checked the porch but there was nothing there, and no card had been put through our letterbox.

I phoned Zara to see if they could talk to Hermes, but first we had to go through everything that had or hadn’t happened multiple times. Then he went into another system where it said my parcel was left in a blue bin, but there aren’t any in the vicinity of my house. Once the Zara chap was satisfied I didn’t have it, he emailed Hermes and will get back to me when they reply. However, it has since transpired that it was in a blue bin, just on a completely different road. It clearly wasn’t our usual Hermes man, and the substitute is a moron.

After lunch was crochet, no Riverdale because it’s Thanksgiving, so I started watching The Punisher instead. I think I need some back story; will do some Wikipedia research. And we’ve just been doing the kittens’ panacur again – they have remembered how much they hate it and my hands have suffered because of it.

Ed Gamble tonight!

The 24th of November.

I am very tired today. I wasn’t out too late at Ed Gamble, who was very good, but maybe my sleep quality wasn’t very good? Bleah.

So I actually started doing some Christmas shopping this morning. I looked at many of the Black Friday offers but there wasn’t anything that really jumped out at me. I did get some things that were cheaper than they might normally have been, but nothing ridiculous. It took me ages to find anything that I really want to give to anyone – there are lots of things to buy, but that doesn’t mean they’re good presents.

This afternoon, I was on the hunt for more wool for crocheted gifts because if I can’t find stuff to buy, I will make people things I think they will like. Once I’d got that sorted, I started on another snood, but had barely got going when Tom and Ann came to visit the kittens. It seems only reasonable as they can’t have them until Clarrie/Molly gains more weight. They didn’t stay very long, so then I got back to my snood, and Daddy came home with Christine!

Family fun time weekend!

The 20th of September. 

I am knackered and in such ferocious pain that I am walking around bent over at a right angle but I have had the bloody loveliest day. 

I got up at eight because my brain was too excited to sleep any longer, and that meant I had time to watch last night’s Bake Off before going out at eleven to catch my train to London.

The journey was largely uneventful, but I was kept amused by the man sitting diagonally opposite me who was greatly enjoying Game of Thrones on his laptop. Then, in a true miracle, a man appeared with the ramp within a couple of minutes of us arriving at Euston! I was really quite shocked. 

I got a cab from there straight to Paternoster Square, to see the Make Blood Cancer Visible installation. All the names of patients, with their particular type of blood cancer, age and story attached. I roamed around, looking for somebody with AML. It would have been nice to come across a young person, but the only two I found were 62 and 77. I couldn’t really relate. Still, I saw three chaps standing around with a camera and talking, so I went over to see if they were involved in the campaign. They weren’t, they were just interested in photographing it, so then I introduced myself and explained what it was all about. They told me I was very brave, and it was good to see me battling on. I am indeed a soldier. But on the subject of invisible diseases, one of the men mentioned that his wife has an inner ear balance condition, and I said “Oh, Meniere’s?” to which he was very surprised because he’s never met anyone who knew what it was before. She has had the steroid injections in the ear which Daddy is about to have and found them very helpful so that’s promising. 

I left them to carry on, and bought myself some lunch from Paul which I ate in the square while listening to a podcast. 

After that, I hadn’t got anything else planned for the rest of the afternoon and had plenty of time to kill, so I took myself to Konditor and Cook in The Gherkin for some Curly Wurly cake and my fourth coffee of the day. It wasn’t very far, and it was quite easy to navigate a path because I just had to go in the direction of the very tall buildings. Easy. I also bought two brownies because I can’t not, when presented with the opportunity. They are bloody delicious. 

About four o’clock, I decided it was time to go to the hotel, so I got another taxi over to The RE Shoreditch, where Mommy and I stayed when we went to watch Christine do her run in Victoria Park. 

I checked in, and the duty manager got called over because I am disabled. They asked if I wanted to switch to a room with an accessible bathroom but I explained that wasn’t necessary, as long as I could get in the room in my chair. Then I had to read a letter explaining what to do in a fire and sign a form to prove I had received it. All that was left was to pay and my heart beat so quickly as I waited for the machine to confirm my payment because Nationwide have a nasty habit of not allowing large purchases to go through because they are really over-zealous and it causes me no end of problems. Thankfully, it worked and I was hugely relieved. 

I spent the next couple of hours talking to Mommy on the phone, unpacking bits and pieces, and making sure everything was ready for when I returned, ready to crawl into bed. 

Amusical was to start at half seven and I wanted to give myself a bit of buffering time to eat something before going in, so when I arrived I ordered a bowl of chips and a glass of wine because that’s the kind of responsible adult I am. 

The only really wheelchair accessible space was right next to the stage/sound desk, so I had a great view, particularly of all Jayde’s incredible costume changes. They opened with Jayde and Kiri performing a heart-rending rendition of Come What May from Moulin Rouge, and Jayde can really bloody sing! Our first act was Brennan Reece, singing Waving Through A Window from Dear Evan Hansen, which I didn’t know but it was lovely and I am downloading it now. He was really good as well! Next, we had Tiff Stevenson singing Don’t Cry For Me Argentina from Evita, absolutely class. Short interval, during which I had a chat with the father of the musical director who was a big fan of my wheelchair. Next up was Alex Zane, who’d really committed by dressing up as Mary Poppins and singing Supercalifragilisticexpialidocious, including hat changes for the different characters. It was during his song that my hands began to hurt from clapping. Fourth was Evelyn Mok, singing Memory from Cats, in a leopard-print onesie and checking the lyrics on her phone. Another interval, and I was joined by Tiff and her boyfriend, so we got to catch up a bit before the final section. In that, we were given Spencer Jones singing Reviewing the Situation from Oliver, accompanied by the guy who’d been on the sound desk suddenly playing the violin brilliantly, and he was really excellent. And his encore song was going to be You Give A Little Love from Bugsy Malone, so he had to win. Finally, we had an enormous group singalong of Do You Hear The People Sing? from Les Mis and it was incredibly rousing. 

The bar didn’t close, so I stayed for a while, having chats, until it got to about midnight, and Kiri walked with me up to Oval Space so I could poke my head in at Dean’s night before going round the corner to my hotel. When I arrived, I just hoped Adam and Amy were still there, and thankfully Adam spotted me pretty quickly so I wasn’t alone for long. We had a nice talk, then Amy and Elliot came down and we had a singalong to some incredible tunes that were perfect for the night. We were all really tired by this point, and there was some dry ice or something that was affecting my lungs, so I left about quarter to one and was so glad my hotel was just minutes away. When I got out of my chair, I was pretty much bent double with pain and my eyes absolutely killed. So happy to be able to get into bed. 

The 21st of September. 

I had a fucking terrible night. The only good part was the pillows. I started trying to settle down to sleep about two, but I didn’t drop off. I got through two podcasts, I remember looking at my phone and it being half past four, I kept hearing people outside my room, and every time I moved, my back protested heavily. I got up at eight, doubled over in pain. It was no worse than being in bed. 

I got myself dressed and packed up, thankfully not much to put away, and was checked out by quarter past nine. 

Needed breakfast, and I wasn’t far from Rinkoff’s, so I had to get some pastries. I had an enormous cinnamon swirl (only appropriate after Dean’s event last night) and very hot coffee, which I got through while taking in my surroundings. My two favourite customers were the man who came in whose water had gone off so he filled up two enormous bottles and a jerry can, and a guy who wanted a sandwich with only green olives in it. Bizarre. 

To take away, I bought two crodoughs – one toffee apple crumble, one chocolate, plus three rainbow bagels and a mini challah. Then I got a cab to take me to the Wellcome Collection, where I was meeting Hannah, a fellow transplant patient for coffee. I got a flat white and some orange juice so I could take my tablets, then started writing a blog post while I waited for her to arrive. 

When she did, there wasn’t really any stopping us talking, we just had so much in common. There aren’t many transplant patients my age that I come across so it’s lovely when you can sit down with someone who can empathise with all the stupid problems you have. It was a shame we only had just over an hour, but next time we will have longer. 

I wanted to get some kind of green juice from Pret, because my diet had been terrible for the past couple of days, and when I went to pay, the very nice man serving said he’d get it for me, so it was free! Bless him. Then, at the assistance office, they sent me straight down to the platform, and I was on the train with plenty of time to spare. Phew. 

Mommy was there at New Street to pick me up, and I got changed into some jogging bottoms and fluffy socks in the back of the car. We had to collect Alison from school on the way home, and that was terrible because it was hometime, so the roads round there were really busy and all I just wanted to get into bed. 

When we eventually got home, it was about four, and I hadn’t eaten since my cinnamon swirl, so Mommy made me a boiled egg and soldiers and I curled up in my armchair. Finally I can rest. Until the next early start tomorrow.