Archives For anthony nolan

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. 

The 8th of February. 

I am so tired of spending every morning coughing, over and over, having to bring up crap from my lungs repeatedly. It takes hours to subside. I haven’t got an appointment for Andrew’s clinic next week yet, so tomorrow I’ll have to ring the lady I spoke to last week again. 

It’s been another rather nothing day. I have crocheted two coaster-type things, although they’re a bit big so are more like doilies. I am a grandma. 

We watched another episode of Case – it’s only on All 4 so we have to be proactive in watching it, otherwise we’ll forget and I do want to know what happens. I find it difficult to tell all the blonde Icelandic girls apart; they all look so similar. There’s another, similar drama starting soon called The Team so hopefully they’re different enough for us to keep them separate in our minds. 

Nothing else. Just want to be back to normal size. I’m doing a talk for some Marrow volunteers next week and it would be so nice if I didn’t have to wear an enormous jumper but I suspect I will. 

The 9th of February. 

So it seems 2017 is the year I become a pensioner, as I’ve made about five doilies in the past two days. They’re my new scarf – when I’m bored and have no larger project, make a coaster/doily. 

This morning, I made a purple coaster, and this afternoon, I did a larger, doily-type one while listening to 69 Love Songs by The Magnetic Fields. They have such a wealth of material, I wish I’d known about them back when they might have toured. 

I had several phone calls to the hospital, trying to make sure I was going to get an appointment for Andrew’s clinic next week. I talked to the lady from last week, but she had no paperwork about me, so then I spoke to his secretary who was able to sort it out very efficiently and I’ll be seeing him next week. Apparently the compression garment people have me on their list as needing one urgently but still no idea when that might progress. 

This evening I had another Cats Protection meeting, although this week’s was not as long and I have no jobs to do. I am good at being the host, providing biscuits and doing admin. 

The 4th of February. 

I do not like diuretics one bit. So much peeing. If this makes no difference to my arm in a couple of days I will be rather annoyed. More annoyed, I should say. I’d really like to wear jumpers that aren’t massive and coats that are actually warm. Sigh. 

Blog post this morning during Saturday Kitchen, then I had to be at Lyn’s house at twelve for another Cats Protection meeting. Part of it involved going down her garden, so I stayed in the house and made friends with her big black kitty. Very soft and floofy but also moulty, like Oscar was. 

It wasn’t a long one, but I was still quite hungry for my lunch when we got back. Then this afternoon, we have made Nigella’s quadruple chocolate loaf cake. It is a behemoth. 

Today is World Cancer Day, and I’ve been wearing my Anthony Nolan Unity Band. I can’t quite believe this year is ten years since I was diagnosed. I don’t know what I expected my life to be at this point – I suppose I thought I’d be fine, or dead. Certainly not this weird, in-between state, constantly breaking down in ever more creative ways. Sure, I’d like to be fine, but I don’t want to give up the good things in my life for that and I think I’d have to. I’m willing to pay this price. 

The 5th of February. 

If it’s not one thing it’s another. The arm is still exactly the same, and my back is really bad – the right side of my lower ribcage is super stiff, so deep breaths are a problem, standing and walking are even worse than usual. God I wish the bloody pain team would just give me an appointment so I could get a drug that works and doesn’t make me sick, unbearably itchy or incapable of breathing. 

Day largely spent in front of the television – Sunday Brunch and rugby, while I crocheted a sock. It’s just a practise, not going to be wearable, but if it works then I can do it again properly. 

This evening, I’ve been out at The Glee to see David O’Doherty. I planned on using the lift as my breathing is still worse than usual, but then I was told to ask inside the venue and they’d take me to it. Unfortunately, that kind of defeats the purpose because to get to the lift, I’d have to leave again to walk to the back door where the lift is, which makes me breathless anyway. So I climbed the stairs, and was taken to my seat which of course was as far from the door as possible. At this point, I was out of breath to the point where it scares me. I just have to sit and wait for it to get back to normal. 

The show was great, just what was required. Denise from Cats Protection was there with her husband and we were saying that we really needed some relief from the awful world. He definitely was that.

The 2nd of February. 

It’s been a very busy day. As soon as we arrived at the QE, we bumped into John Higham from the dental hospital (there with a family member, not ill himself), and then Janet, who adopted Monica from us ages ago. She’s doing really well, climbing up onto their garage roof, yet when she was with us, she couldn’t even jump onto the windowsill. 

Andrew saw me super promptly, which was excellent. He showed me the pictures from the venogram, and it’s quite obvious that what he did should have worked. He doesn’t want to go back in immediately, which is understandable, and having looked at my arm, our first port of call is going to be a compression garment which he is trying to get organised as an emergency (it normally takes two weeks to get an appointment). I have to keep it elevated, and squeeze a stress ball a lot to encourage blood flow, and see him again in a couple of weeks, when we’ll talk about next steps if necessary. 

We were meeting Naomi for lunch, and there wasn’t time to go home and back again, so we went into town. I bought a new jumper with large sleeves to add to my current rotation and spent the book token I got for my birthday on Negroland by Margo Jefferson. 

We got to Strada first, and it was full of elderly people obviously going to something at Symphony Hall. When Naomi arrived, I gave her the bunny I made, and she was delighted. She was very interested to hear about my most recent Anthony Nolan trip and to talk about the charity – she’s learning more about how they work because she’s choreographing the new show being created about Kids Company that’ll be on at the Donmar in the Spring. Must go see it, it sounds like it’s going to be fascinating. 

I had pizza and a chocolate fondant, neither really worthy of photos but very tasty. She had to go at half two because she was seeing Love at the REP, and we came home where I have done very little except squeezed a stress ball. 

The 3rd of February.

Bleah, my cough is extra rubbish today. I can feel the gristle in my lower ribcage as the bones grind together. It’s really not very pleasant. 

This morning, I did the blog post I should have done yesterday, and I started taking some diuretics. We thought it was worth a try to get some of this fluid shifted, so today has also involved more peeing than is normal. Maybe they, along with the stress ball squeezing and arm elevation, will help the fluid. Heard nothing about the compression garment.

After lunch, Daddy and I went to see Sing. It was that or Hacksaw Ridge, and I thought I needed the light relief of singing animals. I was not prepared for the ten or so children who were there – at a two o’ clock screening on a weekday, there should not be loads of kids, no matter what the film. If they’re ill, they should be at home, if not, they should be at school. I had to shush them several times because their parents were not doing anything. 

Apart from the children, I did enjoy the film. Rosita is my favourite – I love her and her piggy power.

The 25th of January.

Venogram day!

I was up at six, and having got dressed, I drank as much water as was humanly possible before my cut-off at seven. We arrived at ambulatory care at about quarter to eight, and we sat around for forty five minutes reading our books before the nurse came to start going through the checklist. It became apparent that the doctors wanted my potassium checking because it was high yesterday, but it was fine today. At half past nine, I was told to gown up because they’d be coming to get me soon, but then they actually didn’t arrive for two hours. There had been an emergency in angio so I was not angry, just bored and hungry. So hungry.

The nurse in imaging clerked me in (the amount of times I have repeated my date of birth, address and the fact that I am NOT PREGNANT today), then Andrew and the doctor who was working with him came to see me, and we talked through the plan. Andrew had the same theory as me, and the intention for today was to do the venogram and if we could do the venoplasty then he would.

I got taken into the angio suite, and everyone introduced themselves while I and the room got prepped. I got to be in the Who which is fun – normally I’m asleep for that part. While the doctor shoved the wire up inside my vein, the nurse on my other side stroked my hand and tried to distract me by talking about bees. I love that they do that kind of thing. We both knew what she was doing, but it is like a quiet contract we both entered into. They took some pictures of inside my arm, and it was found that I had a narrowing in the subclavian vein (not the superior vena cava like last time). I hadn’t had a massive amount of gadolinium (the dye they have to use because I’m allergic to the CT contrast dye they would normally use) yet so they gave me some fentanyl and midazolam, then I had a lovely nap while they inflated my vein. Hopefully that should do the trick, but if it doesn’t go down in a couple of weeks, I’ll have to go back to have something more invasive and permanent, like a stent. Let’s hope not.

The 26th of January.

Ooh I am so tired. Very long day. I’d not long finished my breakfast when my phone rang – it was a journalist called Christine who had got in touch with me via Anthony Nolan and wanted to do a kind of basic interview before she goes pitching the story to different publications. Sounds like it’s going to somewhere like Woman and Home or Woman’s Own right now.

When I’d finished talking to her, there was just time for me to eat some lunch and sort out my bag before I had to go to the station. I got taken to my train, but before we set off, there was an announcement to say there had been a fatality, so we were being diverted via Stafford, so would be skipping some stations. We eventually arrived in London forty five minutes late.

I had planned on going and doing some shopping but that seemed rather pointless and expensive considering the cost of cabs involved and the time I’d get to spend in the shops, so I went to Origin Coffee and had a flat white and a brown sugar cookie while looking over the NHS documents about second transplants. I get more angry every time I read them.

I sat and watched people go by for nearly an hour, then I needed to get a cab to go and meet Lauren and Amy for dinner. I thought it would be easiest to get one from Euston, so I drove back down the road to the station. I also had to pee and the disabled toilets at Euston are all out of service so someone had to let me in the baby change toilet instead, but at least it meant I didn’t have to pay!

I was able to pick up a taxi without too much difficulty, and he took me to The Diner in Camden. They found a ramp so I could get inside, then I got settled in a booth and had another coffee while I waited. Lauren was a bit late because the traffic was awful, but it was fine because there was a couple with two cute little boys nearby who were very entertaining.

When she did arrive, she gave me my birthday present of the Ruby Tandoh book, so I can make lots of tasty foods. Speaking of tasty foods, she ordered a vegan burrito and I got some pancakes with bacon to make up for the lack of pancakes on my birthday. Amy arrived mid-meal (she did say we could order without her), and we got to just have a nice dinner and talk about normal things, like Lauren’s move and an exciting project which Amy has been put forward for. I got my arms out, and Lauren found the size difference absolutely hilarious. She is one of the few people allowed to laugh. I’m actually fairly sure it’s got worse since yesterday but I just have to watch it.

I kind of had to leave in a rush, hauling my chair out of the door just in time to get into the Hailo cab. The driver was wearing shorts, which wasn’t then great for him when we got stuck outside the Anthony Nolan office gates and he stood around ringing bells until I got through to someone on the phone who let me in.

I was the first one of our group to turn up, followed by Jack, who is a supporter running the marathon (again), and Hayley and Jess who are both heavily involved with Marrow. We got started very promptly at eight, in a session facilitated by Ammeline, who does not work for Anthony Nolan. We began with an exercise saying what kind of animal we would be – I decided I am a panda because although everything seems to keep telling them to die, they just refuse to and I think that’s like me. Plus I’m cute. Then we got on to the subject of charity and Anthony Nolan specifically, what they do well and what they could do better. We were kind of biased because we love them, but we were able to come up withe some things.

I had to leave before we officially finished, because I needed to get back to Euston, although I don’t think it was going to go on too much longer. The car that arrived to take me there was a Mercedes, non-accessible, so I had to collapse the chair and put it up again at the other end, which was a disaster for breathing. It took ages for me to get back to normal.

I bought a hot chocolate and went to the assistance office, where the man told me to go down to the platform where his colleague would meet me. He did not appear, and after ten minutes of waiting in the freezing cold, I rang the office back and he was confused as apparently he’d rung the man “ages ago”. When he finally ambled up in his buggy, he was then pretty incompetent at putting the ramp on the train so having got up to my seat, I did not thank him.

We got moving, and I was desperate to sleep. However, I cannot sleep in a place that isn’t my bed and especially when I’m not even poorly, and I am paranoid about missing my stop. No sleeping was going to happen until I got home. Unfortunately, this train got delayed too because an engineering one in front of us had a problem so we got stuck outside Milton Keynes for forty five minutes. So dull. We made up a little bit of time, but still didn’t get to New Street until one. Tired, cold, in pain.