Archives For anthony nolan

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 27th of May.

This morning I found myself with my legs out of the duvet but covered by a blanket, part of that duvet over my middle, and my top thurd uncovered. Didn’t notice the thunderstorms at all but obviously I couldn’t sort out my body temperature.

While I watched Sunday Brunch, I wrote up a blog post, then I spent some time having a staring contest with Dolly. She has smelled my hand, but when I moved to touch her, she backed off. I don’t know how to make further progress with her. Maybe I’ll chuck a small pile of Dreamies on the floor and stealth-stroke her.

After lunch, I took a bunch of photos of my big, colourful cardigan, then I started on the next one, although that will only be one colour. It’s funny, I think the one I’m wearing could either be considered hideous, or be something you pay £90 for in some sort of boutique.

It has been stormy since mid-afternoon, and I am getting concerned about my bedroom ceiling. The man isn’t coming to fix it until Tuesday.

The 28th of May.

I am the best. I gave stroked the mommy cat! Very pleased with myself.

This morning, I was supposed to have a phone call with Gabby from Anthony Nolan to catch up, but I think when we scheduled it, neither of us realised it was Bank Holiday so of course she wasn’t in work to call me. Maybe she’ll try tomorrow. So, instead of talking to her, I sat and worked on the new cardigan while watching the news channel and the tennis. Cool.

After lunch, I went to see the kitties, and this is when we had our breakthrough. I got the Dreamies box out, and Dolly recognises the noise, so she came out from behind the chair. I started putting them on the floor for her, occasionally chucking away a kitten, and at one point she had her back to me so I just started stroking her back.

She flinched, but then she accepted it. I even scratched round her ear! There wasn’t any purring, but I feel like a champion. I gave her lots more Dreamies and told her what a good girl she was.

Today was World Blood Cancer Day. Soon it will be eleven years since I was diagnosed and every day is a gift. Although honestly, lately it feels like I’m just a day closer to dying.

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.