Archives For anthony nolan

The 22nd of February.

Today has been most boring and not particularly fruitful. Plus I am in quite a serious amount of pain. Not only have I been sitting badly at the computer all day so my back is dreadful, but I accidentally stabbed myself in the thigh with my crochet scissors which are incredibly sharp. I felt them go in and immediately screamed FUCK, then ran into my bedroom, grabbed a dressing from my drawer and stuck it on, putting as much pressure on it as possible. It hasn’t bled too much, but it’s pretty fucking sore.

So yes, at the computer. I hate to admit it but I keep being ready to clear things, then I find another job that needs doing first. That was backing up videos I’ve got of gigs that I’m not certain have been saved elsewhere and that has taken hours. I have finished season 4 of The Blacklist, and have deleted up to 2016. 2018 is the big beast – it’s where all the reborn photos live so that’s over 40,000 photos and I am not looking forward to it.

I got the money from Union Chapel! And our grand total is just over £14k! Amazing.

The 23rd of February.

Today has been half boring and half joyous. First half boring, because I was sat at the computer again. I can pretty much guarantee that is how I’ll spend my weekend too. Deleting, deleting. So tedious. I’ve got to halfway through 2017 now. Very close to the stupidly large 2018 folder that is a huge mess. Then I have to sort out what photos actually belong in this year. Ugh.

Came back downstairs for lunch, then Daddy and I went to see Black Panther! I couldn’t book the tickets beforehand because Vue have altered their system so you can’t get a carer ticket online for Gold Class. I don’t think it’s on purpose, because we could get them fine in the cinema – the website just needs fixing.

It is SO GOOD. Not just the acting, the story, the characters, but the set is fantastic, it is lit beautifully, the sound is used exquisitely, even taken away when the moment is right. It has all been thought through so carefully. I can’t imagine how it must feel for black people everywhere to see themselves and their culture represented so wonderfully. Maybe if I saw disabled actors playing characters unrelated to their impairment. Anyway. Wakanda forever.

 

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 4th of February.

I am cold and tired, and I think one is feeding the other. I don’t know why; I didn’t have a particularly bad night but maybe my body is just furious with me for trying to exercise. My back has been absolutely horrendous today, to the point where I still can’t even force myself to stand up straight.

This morning, I wrote up a blog post while watching Sunday Brunch, then I made the antlers, ears and arms of Heinz. I also put together a post on World Cancer Day, using some bits from the Anthony Nolan blog that they didn’t keep, and adding some extra paragraphs to make it more suitable for today.

After lunch, I went upstairs to get dressed (I couldn’t be arsed to get out of my pyjamas this morning) and take some photos wearing my Anthony Nolan Links badge for the blog post I then put up.

Back in the living room, I put Heinz together, and now all the Christmas dudes are finished! Off to Iceland they go.

The 5th of February.

My MRIs on Wednesday cannot come soon enough. Last night, my right arm and calf felt really heavy and swollen, and today it feels like something is being squeezed in the arm. I could blame it on the fact that I’ve been crocheting for a lot of today, but that’s no different to many other days when I haven’t felt like this.

This morning, I suddenly had no project to work on, so I decided to look at the jumper I started over a year ago before my arm swelled up. I’m far less keen on wearing the wool I used, so I unravelled it and instead I am using it to make a chunky cabled scarf like the one I made for Christine for Christmas. It’s going well, but my arms need a rest now.

This afternoon, my Edward’s Menagerie Dogs book arrived, so I won’t be short of projects for long. There are so many great patterns, I can’t wait to make them all, although some will be very wool-heavy and time-consuming.

Can’t believe it’s only a week until Still Standing. I do not expect my sleep pattern to be good until then.

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 31st of January.

Today has been fine, although I got a disappointing email this afternoon so now I feel quite gloomy.

I had a better sleep, thankfully, and got up when my alarm went off. I wrote up a blog post, then I got back to work on Woody. The leaves, for want of a better word, of the pine cone take ages, and I have to sit in a position that is really uncomfortable for my back while doing them which is not ideal.

After lunch, I finished the pine cone bit off, then I decided that I was going to do some exercise. It was one of my New Year’s Resolutions to start working out again, even if it was much less than before, because I can still regain some muscular strength, even if I can’t do things I’d do in the gym. So I got out my yoga mat and did some very basic stuff, mainly on the floor for about half an hour, which was enough.

Since then, I got an email from Anthony Nolan about the blog I wrote for them. They want to publish it on Friday, but have edited out a lot of the best and most important parts, because they are either “scary” or “don’t offer a shared experience” for patients reading it. I wasn’t writing it for potential patients, I wrote it to be published in the press somewhere and why will they pick it up now a massive chunk is missing? I’m aware my story isn’t very inclusive for other patients but my uniqueness is exactly why it’s so incredible. I can still put it on my blog but what’s the point when the audience is so small?

The 1st of February.

It is too cold, bleah. I had to have my extra blanket in bed last night, but I at least had a decent sleep.

This morning, I did much crochet. Simon the snowman now, and currently he has legs, a body and eyes. Very productive, but not very interesting.

After lunch, we had to go into town because it was time for my eye test. I had a long chat with the optician about what’s been going on since my last test two years ago, when I had the eye GvHD but hadn’t started any treatment. We went through all the drops in currently using, and I showed her my last letter from Dr. Barry on myhealth which was useful.

My eyes are a bit worse, as I suspected, so I’m having a new prescription and I decided to try on some new frames as well to see if there was anything I preferred to the ones I currently have. I tried on several pairs, and have chosen a green pair by Jono Hennessy, who did my previous pair, so they’ll arrive in 5-7 days. I’ll have to come up with a new logo for the blog!

The 13th of January.

I was feeling frustrated at myself, because I had to completely unravel the bear I’ve been making because I was going to run out of wool if I continued with the hook I’ve been using. Start again! However, Singin’ in the Rain is on and it never fails to cheer me up.

I was also annoyed because Daddy and I went to see Coco, but my experience was marred by the man behind us constantly talking to his son. Talking in cinemas should be illegal.

When they weren’t blathering on, I very much enjoyed it. It’s so colourful and well told, and for once I didn’t sob so I might be able to watch it again. The songs aren’t great though. Not a patch on Moana.

Not much headache to speak of this morning, which was good because we had to be up early for eye clinic at ten to ten. It turns out that the pressures in my eyes have gone up, so I’m starting a new drop to combat that. I’m to try to bring my dexamethasone use down to twice a day, then switch to prednisolone and get that to twice a day. Every time I’ve done it in the past it’s resulted in pain but hey, I’m a trier.

The 14th of January.

It occurred to me this morning that next Sunday is my birthday and I really haven’t thought about it at all. Got no plans, haven’t asked for anything. Not my usual self at all. I suppose I have just had too much other stuff on my mind!

Today it was back to being productive. This morning, I watched Sunday Brunch and restarted the bear. Over the course of the show, I finished the head, although even with a much smaller hook, it used more wool than I expected it to.

After lunch, I had to sit in silence so I could finish writing my blog post for Anthony Nolan. I took a break to watch an episode of The Biggest Loser with Mommy while she was not at hospital with Grandma, then I went to sit with the kittens and write some more. However, they weren’t keen on sitting still, and then I choked on some of my water which was terrifying for them and for me, so I returned to the living room where I got to the end. It’s a little bit longer than they asked for, so I’ll ask Mommy to proofread it, see if any of it needs cutting, then send it to Lucy.