Archives For anthony nolan

The 3rd of December.

I have had many jobs to do today, and have completed most of them. The important ones, anyway.

Once dressed and full of festive coffee, I got two blog posts done (the one I typed yesterday didn’t work), then set about writing some promotional blurb for this event I am planning (I promise details next week) and it is harder than you might think! It took me the whole of the rest of the morning. It needed to be under 200 words and I am very bad at being concise.

After lunch, I did some more of my crochet gifts while we skipped through the X Factor final (let’s not talk about it), then I painted my nails while we caught up with last week’s Howard’s End. Wrote some more emails, and now I am about to plan where Mommy and I go tomorrow in London and in what order. Christmas shopping trip!

The 4th of December .

I am on a train and my back hurts. It has been a long day and my left eye has been excruciating for most of it. I have positively flooded it with drops to try to alleviate some of the pain. Occasionally it hurts less and I am taking the opportunities as they come.

I woke up at twenty past five for no good reason and couldn’t get back to sleep, so I tossed and turned as I listened to podcasts to kill the time.

Coffee, toast, advent calendar biscuit (I decided I probably wouldn’t want to eat it by the time I got back this evening). At New Street for ten o’clock, where I discovered Nationwide were having issues so I couldn’t withdraw any money or use my debit card. Not ideal for a day of Christmas shopping. Still, it got resolved while we were on the train, so I got some cash at Euston and breathed a sigh of relief.

Started at Harrods where we spent half an hour getting lost trying to find the café, having to traverse the hell that is the Toy Kingdom before finally finding the place to sit and drink coffee and eat lunch. I had a braffle, which is a brioche-waffle hybrid filled with Welsh rarebit and it was delicious. We were entertained by the very stressed manager telling all the staff that it was imperative that they smile, and when he got angry he started speaking Italian so we couldn’t understand. The one thing I hate about Harrods is that no matter when you go, it always seems to be full of children. Why are they not at school? I am very much of the Victorian position that children should be seen and not heard except I don’t want to see them either unless I have chosen to spend time with them. All I purchased was a salted caramel brownie. Disappointing this year!

Next stop Fortnum & Mason which was much better. I only bought my festive Buck’s Fizz marmalade but Mommy got several things so it was worth it. We only go to the food floor in there because the lifts are ghastly and I cannot be arsed. So then we went to Liberty via Cinnabon (I cannot pass it without buying one, it would be a disservice to Dean) and there I found joy in a felt sausage dog tree ornament and the haberdashery. The wall of wool is my happy place. However, I discovered the one in John Lewis is even better. I know I should have known this, but we hadn’t been before so didn’t know its true beauty. So much wool. I bought some that I would never normally have purchased but my eye really hurt and I was sad so I made a decision of self-pity.

Last stop Selfridges. I bought an elf gingerbread man. But he was all. I saw some fun wrapping paper but it would be ridiculous to buy that in London and besides, I have not decided on a theme yet and I can’t do that until I have got all my gifts. I have bought one present today, only a couple left to go. I am so uninspired this year.

Now on our way home. I am so looking forward to a comfortable chair and taking off my eye make up.

The 29th of November.

It has been a productive day but not a very interesting one. Started off with a blog post, then some Cats Protection admin so Amanda could come to pick up paperwork and fees from me. I also made part of Daddy’s Christmas present before lunch.

Amanda came about half past one, and wanted to meet our current kittens, so we spent some time with them and she told me how Hugo and Harvey are getting on.

When she left, I went upstairs to work on the computer for a few hours. Making a promotional image for this Anthony Nolan event I’m going to be doing (more details coming soon) while I listened to a Richard Herring’s Leicester Square Theatre podcast. I was forced to stop by eye and back pain, and I have the base of it done, just need a bit more information.

That is all, really. In happy news, I got a Christmas jumper on today that I didn’t expect to fit. The compression garment does at least squeeze my arm down while it’s on.

The 30th of November.

I feel like today has been one of those days where I’ve spent lots of time on things for not a huge amount of reward.

This morning, I washed my hair, then rang Lydon’s to book the kittens in for neutering and chipping next week, and Black Sheep to see if Michaela could squeeze me in for a fringe trim this afternoon, which she could. Had a long chat with Mommy and wrote another email about this Anthony Nolan thing, now waiting on a reply on that as well as the one I wrote yesterday.

After lunch, I was back upstairs on the computer, working on the same thing while I half-watched Riverdale and listened out for the DPD man bringing a delivery for Mommy. Then I had a phone call from Irregular Choice because they got my Christmas shoes in! Thankfully, I had already had an email from them so they are on their way! Festive feet.
On the way to Black Sheep, I talked to Christine on the phone, mainly about how cold it is and how young people don’t wear enough clothes.

I will be wearing many clothes this evening, as I will be out seeing No Such Thing As A Fish Live!

The 27th of November.

Another rather festive day for me!

Got up a little earlier than usual because Mommy and I were going into town so she could give blood and we could do a little bit of Christmas shopping. Her appointment wasn’t until quarter past eleven, but we went in early to return some Zara dresses and the queue in there can be very slow. We escaped with a bit of time to spare, and my plan was to go to the Hotel Chocolat café to have a salted caramel and clementine hot chocolate while I waited, so she came too for a few minutes.

While I drank, I perused the Pandora catalogue for the right charms for my two December anniversaries. I eventually settled upon the two owls for the 19th and the reindeer at night for the 21st. When she came back, we went to buy them, then to Irregular Choice. They have some shoes that I want for Christmas but I’m not sure what size I am, so I wanted to try some on. The girl working there was very helpful, and she found similar shoes in what we thought were the right size for me to try. They were good, so I have an email alert set up and they’ll call me if they get any stock in. Next was Selfridges for me to get something for Daddy, and to check if Huda have changed their drawers. They haven’t, but I spoke to the woman in charge and she was hoping a delivery downstairs was new drawers! But if it wasn’t, they’re aware of the issue and are trying to fix it. Our last stop was John Lewis because I wanted to check if their haberdashery had any chain for a necklace but no luck.

Then home! I had some cheese on toast as the weather demanded it while we sped through the X Factor (hooray for Kevin! Although we don’t want him to win as that rarely ends well). After that, more crochet, although that was limited by my left eye being excruciating for most of the day.

The 28th of November.

I have a feeling that many entries from now until Christmas will involve me sitting and crocheting. I have so much to do! Making at least four different things and some are quite intricate so I have much more work ahead of me.

Today has been rather productive on several counts – I got a blog post done, spoke to both the secretaries I needed to, and had a fairly long conversation with Emma from Anthony Nolan about a cool thing that I am planning but can’t talk about just yet.

This afternoon I have been crocheting – mainly working on a present for Grandma but switching to the one for Mommy when she went out. I was also composing an email about this Anthony Nolan thing and working on some other stuff to go alongside it.

My eye has been much less problematic today, thankfully. I think not having any make up on has helped. Got to wear as little as possible.

The 18th of July.

London in the summer is my favourite. I was down today for the summer reception of the APPG for stem cell transplants at the Houses of Parliament.

I got to New Street about lunchtime, bought myself some food and coffee, and went to sit in the assistance office. They got me on the train nice and swiftly, and I settled down listening to some empowering tunes to get me pumped for talking to MPs. At Euston, of course, they were late to pick me up. They might have been just within the 5 minutes but I was bored and had to pee so got the chair off myself. Had an awkward moment at the disabled toilet where the man with the key tried to stop a woman and her daughter going in only to be told that the daughter was blind. Ergh.

I went to get another coffee, and although it was early, I thought I might as well just get my cab to Westminster, just in case there were delays because of security or whatever. I had a very perky taxi driver, who I educated about stem cells, and he ended up dropping me off quite a way up Whitehall, because otherwise we would have sat in very slow traffic while the meter ran up. So I beetled down the road in my chair, trying to avoid people and not get blinded by the bright sun. When I arrived at the visitor entrance, there were only a couple of people ahead of me, and they just x-rayed my bag and patted me down. No weapons here. I carried on through to the main entrance hall, and it was only quarter past three. The reception didn’t start until 4. Oh well. I texted Cassie from Anthony Nolan to let her know I was there, and proceeded to twiddle my thumbs. I didn’t have to do it for long, as I soon saw Henny and Richard from AN arrive, so then I had people to talk to, and they found someone who could take me to the terrace pavilion an accessible way.

When I got there, I saw Cassie and Simon, and met some other members of the team who I’ve heard of or talked to but not met in person before. They were still setting up, so I just watched and talked people as they arrived. As it got to 4, people began to trickle in, and before we knew it, it was really rather busy. I actually didn’t end up speaking to any MPs, except Mark Tami, the chair of the group, as it happened. I talked to several people from Anthony Nolan, and other patients or supporters. Emma, one of the other young ambassadors, was there, so we talked about what’s been going on with both of us and had our photos taken, then I spoke to a girl with an interesting connection to me and obviously an incredible memory – she met me when I was in YPU with Alice and Vicky back in 2010/11 (I think that’s when it must have been), as she was a friend of Alice’s. She was there today with another of her friends who’d had ALL, so we had a good conversation about relapses and getting leukaemia tumours. Then the last people I really talked to were a girl called Amy and her friend – Amy set up the change.org petition to reverse the decision to not fund second transplants when her friend Sasha had to fundraise to pay for hers. Only after she started paying did the decision change.

Before I knew it, it was 6 o’clock and time for us to go. Cassie found a man to take me back out, and once I’d escaped the labyrinth, it was time to find a cab. Last year, nobody was willing to come to Whitehall, so I decided to drive up the road for a bit until I could find somewhere suitable to get picked up. I ended up getting all the way to Shaftesbury Avenue, and eventually stopped at The Palace theatre. I was bound to get a taxi round there, so I used the mytaxi app and a chap came to pick me up. It didn’t take us long to get to Euston, so when I arrived, I had about an hour before I had to go to assistance. I bought a sandwich and a drink from M&S, a couple of magazines for the train, then in WHSmith’s they were doing buy one get one half price on some books. There were two that I wanted anyway. I am awful.

The 19th of July. 

Tired. Took me hours to fall asleep, and I’m a bit floopy today. Got up at half nine, and most of my morning was spent writing about yesterday. It will be a long entry – always is when I go on a trip, so probably another tomorrow. 

This afternoon, we caught up on The Handmaid’s Tale from Sunday, then two episodes of Criminal Minds: Beyond Borders. Then I went through to the kitties, as I didn’t really see them at all yesterday. I watched two episodes of Orphan Black, and they slept on opposing windowsills. I got Bree to purr again! She likes what Betty likes – having her chin scratched. I will make her friendly. Or at least not terrified of people. Christine is coming back with us tomorrow, so she’ll meet her and that will be a good test. Hopefully she doesn’t run away. 

The 20th of February. 

I so want to be able to breathe normally again. Or at least, normally for me. To walk from the living room to the kitchen without needing to recover, to not need to spend the first hour of every day coughing up endless amounts of crap. I suspect Andrew won’t be able to get me in next week because he’ll be only just back from half term, so I have to be patient. I am just so tired. 

I spoke to the orthotics team this morning and I’m going in tomorrow at 9.30, presumably to be measured for a sleeve that goes over the hand. 

The rest of the day, I have been waiting around for Mommy to be available so we could bake brownies with the triple double chocolate Oreos in. At one point, we almost got started, then there was decorating chat, then Alison came over, so an hour after going to the kitchen, we began. I made sure we cooked them for the full amount of time, so hopefully they won’t be underbaked like usual. 

Good news! NHS England have announced they “are confident” that funding for second transplants will become available, but this is not yet confirmed. It also begs the question of what the hell has the anguish of the past six months been for? The pressure is not off. 

The 21st of February. 

I think the steroid eye drops are working – I had to wake up at quarter to seven, and it took much less time for my eyes to adjust to the light. Hooray!

Up early to see the orthotics team – Chris is on annual leave this week so I saw Pete, the clinical lead. I explained what had happened and showed him the pictures. He took some more measurements (and was pleased I had worn a jumper with easy arm access), and with any luck, I’ll be able to pick up the new sleeve tomorrow after haematology clinic. 

Before going home, we went into town so I could return the jumper I bought the other day, and I got a birthday card for Mommy. Her present is on its way, so if it arrives in time, I’ll wrap it on Thursday while the dining room is being painted and the fumes will force me to retreat to upstairs  

This afternoon, Daddy and I went to see Hidden Figures. It is really superb. I adored all of the costume, especially Janelle Monáe’s dress at the beginning. Loooove. I read an article about the three women (Katherine G. Johnson, Dorothy Vaughan and Mary Jackson) in New Scientist a few weeks ago, and have been really looking forward to seeing it since then. I can’t believe I did not hear about these women until now. And I am worried that we are going back to the time they came from.

 

The 18th of February. 

Well, that did not last long. I had the compression garment on all night, as advised (and slept terribly as a result) and it had squeezed loads of the fluid into my hand, so much so that I couldn’t really make a fist, because even my palm was fat. I’m pretty sure this is not how it’s supposed to work, and it was not reasonable for me to keep it on, so Mommy wrenched it off and I’ll ring Chris on Monday. I think I just need one that goes over my hand instead of stopping at the wrist. 

Most of the day has been pretty quiet – it took me a while to write about yesterday, because it hurt my hand to hold the pen and I kept cramping up. I spent a lot of time trying to force the fluid out of my hand, back into my arm because at least when it was there, it didn’t hurt. 

Had to go out just after two, because I was needed at three to speak at the Marrow RAGM at Birmingham University, and had to stop at Jen’s on the way to pick up some Cats Protection paperwork.

The instructions I’d been sent on how to get where I needed to be in my chair were excellent, so I arrived in-between workshops and I got myself settled in the corner with a coffee. I read through my talk again and made some final edits, then I listened to the rest of the workshops. When they were finished, all that rest of the group joined us, and it included my friend Ellie who I met at Find Your Sense of Tumour a few years ago, and Jess from the focus group the other week! Happy surprises. Then it was my turn to talk, and that went fine – they paid attention and laughed when they were supposed to. There were a couple of questions, and I stayed for a bit of chat before taking my leave. Good day!

The 19th of February. 

Writing with hand cramp again, but today it’s because I’ve been crocheting with a tiny hook and tiny wool for too long. 

I had a much better sleep without the compression sleeve, and my hand is now back to its normal size, the fluid having redispersed into my arm. Still, it won’t last long, as I’ve got to ring the hospital in the morning and get us back on track. If Andrew’s doing his best to fix me, I need to do my part too. 

This morning, I got the blog post I should have done yesterday done, and found that all the skin on my feet is ready to peel off. It usually happens some weeks after GvHD, so it’s just that part of that cycle. They now require a lot of moisturising. 

After lunch, both parents were off doing decorating things, so I allowed the football to witter on while I crocheted. After a good three hours, three of the fingers on my right hand have decided that they’ve had enough. As much as I’d like to finish what I’m working on, I don’t need to cause myself pain. 

The 14th of February. 

Another Valentine’s Day without a media campaign, another day of no cards. Back to normal. 

Back at the chiro this morning, just to top up. I needed some work in the ribcage area still, but I can now take a deep breath without it hurting, which is always preferable. 

When we got home, I had time to write up a blog post, then Rosemary arrived just after twelve for one of the semi-regular lunches that she has with Mommy. While Mommy heated up the soup she made this morning, I explained what was going on with my arm, and all the various health issues I had over Christmas. 

This afternoon, I watched Katherine Ryan’s Netflix special, In Trouble, and crocheted just a small doily. No time for an all-day project today. I have ordered some crochet thread so the next ones I make will be not as large as the ones I’ve made so far. 

I just want it to be Thursday. I had a dream last night that I was going to have another venoplasty, but they cancelled it at the last minute because the door of my cubicle didn’t lock, and I was so angry. I can’t carry on like this. 

The 15th of February. 

My hand aches from all the writing I’ve done today but here I am again because needs must. 

I was woken up by Mommy stripping wallpaper in the dining room. Somehow, the sound travels directly up so it sounds like she’s doing it in their bedroom which is next to mine. Not the start to the day I expected. 

My breathing was pretty poor this morning, to the point where I needed extra oxygen after my shower. I really don’t know what I would do if I didn’t have it. After breakfast, I made another coaster/doily for Penny because she liked the grey one I did and it’s her birthday next week. Also, the crochet thread I ordered arrived, so I can make smaller, fiddly ones. And I got the new mug I purchased to replace the one Daddy broke yesterday, which is very speedy delivery!

After lunch, I sat down to plan my talk for the Midlands Marrow RAGM on Saturday. After two hours, I’d written five and a half pages, which I will have to practise to see how long it takes. I have twenty minutes, but that includes Q&A so I need to leave enough time for that. 

Clinic in the morning. Begging time.