Archives For haematology

The 5th of December.

Ugh fuck I am tired and sad and stressed.

First thing I had to do was to out with Mommy to the sorting office to pick up my Christmas shoes, but that was the only good part of the day.

When we got back, I wrote up a blog post, and that took longer than it should have, which was bothersome. Then Rosemary came for lunch, so that was distracting and meant I couldn’t get on with more jobs.

I had some of the soup and cheese scone that Mommy had made, then I got on with my planned work. There are just loads of questions that keep coming up in the organisation of this event – it is a lot more complicated than I had imagined. I sent Daddy an email with some questions which he had additions to, then he got angry with me because he misunderstood my reply. I think we are friends again now though.

After that, I got my crochet out and have essentially completed one present. Two more to go. Then two other things to make. Sigh.

The 6th of December.

Mood greatly improved, despite a dodgy sleep and an early start. I woke up at three, then again at half five, after which I didn’t go back to sleep. Really hoping tonight is better.

I had haematology clinic this morning, where I met a new reg called Dr. Hussain. One of the first things he asked me was if the paper about me had been published yet, to which I didn’t know the answer. Just because I am the subject, it doesn’t mean I am kept in the loop. He didn’t have much to do for me, except my prescription, and took up the majority of my appointment. Then the pharmacists wanted to know about how my eye GvHD was treated, so I did some educating. Always teaching.

Pharmacy were going to take ages to fill my script, so we went into town to pick up two bits from Selfridges – Daddy’s Secret Santa for work and Jonathan’s birthday present. Back to the QE, picked up my drugs, home.

This afternoon, I did some crochet, and had a conversation with a chap from the venue of the event I’m organising so I could ask him the questions I’d talked to Daddy about. Once I was satisfied, I got the booking form back to him, so I should be able to announce it tomorrow!

The 6th of September.

I am sleepy. Awake early for haematology clinic. We arrived at ten, and left at one. For once, I cannot complain about not getting enough of my book read, because that it all I did for nearly two hours. Charlie called me in, and to be honest, he hadn’t got much to do for me, just prescribe all the drugs, and he’s referred me to an immunology clinic to see how well my immune system is functioning, so that’ll be interesting. 

We got to pharmacy just after twelve, and then went to get coffee and sat around for 45 minutes, waiting for my prescription to be ready. Then a very quick trip into town; I needed another set of drawers, and Mommy decided she wanted some too, so she can put all her cross-stitching threads in them. I also needed toothpaste, and got some flat brew espresso chocolate spread. 

Finally got home just after two, and fed the hungry kittens and ourselves. Then I got to sit and crochet, while Mommy ended up taking Alison into Sutton for some errands, because with a broken wrist, she can’t drive or carry things. Then she was off to Grandma’s! She does too much. I worry. 

The 7th of September. 

It’s a good thing I got a good sleep last night as I’m unexpectedly going to be up early again tomorrow. Rang up the dental hospital to sort out my next appointment, because no letter has come through, and after half an hour on hold, I was given half past nine tomorrow! Wasn’t going to say no, after all that. God knows when the next one might be. 

I’d ordered a memory foam cushion for my wheelchair which we needed to pick up from the sorting office, so we did that, then went to Tesco for some Stork and milk (have some baking to do). 

At home, we found that the cushion doesn’t fit the chair, which was always a possibility as we didn’t know the dimensions, so that’ll have to go back. I also received a coat from ASOS, which I am not keeping – I need something with large sleeves that isn’t the fur (too much shedding) and they’re just not big enough. 

This afternoon, I’ve done a bit more make up sorting with my new drawers, wrote up a blog post, and crocheted some more doily. 

Shaki is coming to see the cats at the weekend. We’ve made zero progress with Henrietta – she still hates me and continues to attack me, even when I am giving her treats. She is probably going to end up going to some stables and catching mice. 

The 14th of June.

It feels like we are just lurching from one tragedy to the next at the moment. Every week there is another atrocity, and it seems every single one is political. There is no doubt that the fact that this is a deprived area with poor residents, and that things have been done on the cheap will have made it worse, and the fire service were unable to tackle the blaze as effectively as they might have because they’ve been decimated by the cuts that Boris Johnson made. Heaven forbid there was a fire anywhere else in London. Just last year the Tories voted down a bill to force landlords to make buildings suitable for human habitation (surprisingly, 72 of them are landlords themselves), and Theresa May’s new top aide has been sitting on a review of fire regulations for months. They kill people. Every day. 

I had haematology clinic this morning, which was not enormously productive. I saw Praveen and updated him on my current circumstances, and he emailed Andrew. The most important thing was that we get some drugs, because my prescription got completely messed up when I was in.

I spoke to Emelda, Andrew’s secretary, and she has assured me that the paperwork has been sent and I should get a date for my next venoplasty very soon. I really bloody hope so; it was super warm today and I want to be able to show my arms without feeling like a freak . 

This afternoon, I hid from the news. I put on a sheet mask, watched Pretty Little Liars and iZombie, crocheted. I am lucky that I am able to escape from it. I can’t imagine the terror felt by those on the upper floors; if I were in that situation, I would find a way to kill myself. Absolutely petrifying. 

The 15th of June. 

I’ve been awake on and off since just before six this morning. It was too hot. Not surprising when you consider I still had my winter duvet on – it has been changed now so hopefully tonight I won’t be so warm. 

Quiet morning. Breakfast, coffee, then out to Black Sheep to get my hair cut at half twelve. Michaela was delighted by my FucktheTories necklace and immediately called Danyl over to see, who was straight in for a high five. I have decided he is going to be my colour guy now. Booked in with him next week. My hair was getting pretty long, so we decided to chop off all the back and sides. There’s only so much that can be changed when it’s this short already but Michaela can always come up with something. 

As I was leaving, I went to get in my chair and there was a lady sat by it with a great little chihuahua called Dolores. She was also a fan of my necklace and we had a photo together. 

Got home shortly before two, and this afternoon I have been crocheting, then unravelling because I changed colour and the new thread was thinner, so it has made the whole doily curl inward. Redo with a thicker one. The fluid in my arm makes it ache. 

The 22nd of February. 

New compression garment in place. Still not a fan. 

I had haematology clinic this morning, in the old hospital while the usual building is being refurbished. It’s not ideal, and it think they’re still getting used to it, but it wasn’t horrendously busy when I got there, so it was okay. The nurse said my weight out loud, and I made the foolish mistake of converting it from kilos to pounds which has freaked me out. Bah. I saw the reg that I saw last time, and all he really had to do was sort out my prescription for the next three months. 

We took it over to pharmacy, then went to check if my compression garment was in, but it wasn’t. Dean was in, starting a cycle of chemo today, so Mommy went to get a coffee and I went up to YPU to say hi, although I ended up being there nearly an hour, I think! By then, my prescription was ready, so we picked up my three bags, and were about to leave when my phone rang. It was the orthotics department! The lady who rang was obviously not familiar with my situation, because she said the sleeve was in, but then asked me to come in on Tuesday? I said no, I’m here now, and Pete said he would fit it today. She wasn’t keen on this and said she’d check with him and get back to me, but I just went there anyway, where I was welcomed. I had to wait for him to finish with a patient, then it was my turn. This one went on a little bit easier, although it’s still really tight on my elbow. Really not my favourite.

This afternoon, I’ve been avoiding the decorator man hanging the wallpaper, and stretching out my sore arm. This better be worth it. 

The 23rd of February. 

This is not going to be an exciting one. Obviously, the insane weather has imprisoned me inside all day, although thankfully I have not been gassed by paint fumes. 

No, my problems today have been fourfold – my ribcage is upset again from coughing, my breathing is depressingly terrible, and the compression garment is excessively squeezy inside my elbow and in between my forefinger and thumb. Lots of discomfort, no respite. 

I had planned on doing lots of Cats Protection admin today, but Daddy decided that in order to paint, he had to turn off the internet. I know that doesn’t make sense, but that’s what happened. 

I have therefore spent my day on my own, crocheting the current doily and watching random crime dramas. I had a break when I went upstairs to wrap Mommy’s birthday present, which was much larger than I expected. I am not entirely sure where she’ll put it. 

Oh, and I had a phone call from one of the nurses at the QE – apparently my CRP (infection marker in my blood) is 47 (which is high – should be less than 5), and she was just checking whether I was showing any signs of infection? Well, apart from the cough I’ve had for weeks, no, so that’s hopefully not something else I’ve got to look forward to.

The 22nd of November. 

I think all of the discomfort has abated now. Still not going back to the gym though as I’m still bleeding more than I would like. 

I got a blog post done this morning before we had to go out. I was at the chiro having my back crunched, and thankfully there was not too much work to be done, just a very stiff neck. On the way home, we went to Tesco for stuff for baking (there’s some kind of Christmas fair at Grandma’s church on Thursday), then home for lunch. 

This afternoon, I spoke to the potential adopter I couldn’t get hold of yesterday, and gave her the details of the black and white adult cat who’s being advertised on the Cats Protection website. I’m waiting to hear back from the couple who came to see Archie last night – they loved him, but they loved the other two as well, so now I think they’re having trouble deciding. I hope they choose Archie, or I’ll feel so sad for him. 

I spent the rest of my time crocheting. A request was put in for a couple of hats for the aforementioned jamboree, so I knocked up two, for a toddler and a child. 

Really early start tomorrow. QE at 9. Yay. 

The 23rd of November. 

Awake at 5.45 today. I was wanted at clinic as early as possible because my cortisol levels were being checked. However, that did mean I could actually choose where to sit because the waiting room hadn’t filled up yet! Then I’d barely read any of my book when I got called in by Charlie Craddock. It was actually really good to see him instead of Ram because when I complained about the lack of pain team appointment, he said he would chase them for me, and he has slightly more clout than Ram. He then proceeded to dictate his letters (to my other consultants and the pain team respectively) while I was still sitting there which I always find super awkward but it’s good to know his chasing will definitely be done. Plus he was very complimentary about my Anthony Nolan work.

I had a big order for pharmacy, so while they were doing that, we popped up to TCT to see if they were interested in having a load of my books, which they were, so it was a good thing we’d brought them with us!

Before going home, we went into town so I could get a graph paper notebook (Moleskine appear to be the only place to stock them). Then this afternoon, I have been ringing more potential cat adopters, crocheting my Christmas scarf (it’s nearly there) and icing cakes for the church Christmas thing. 

Another early morning tomorrow but going to be worth it – Winter Food Show!

The 20th of April. 

Ugh well it has been rather a pants day. My breathing has been bad, Monica is gone, and Victoria Wood has died.

It started in an acceptable enough fashion; I did a blog post while trying to not bend my neck too much in any one direction, watched a wedding on This Morning, and spent a little time with Monica, having a little play and rubbing her belly.

Shaki arrived just before one, and we started filling in the paperwork for Monica’s new home. When Janet, her new owner, arrived, I took the cat carrier in and put the blanket she sleeps on inside with some of her toys and a couple of Dreamies to try to tempt her in. We finished all the forms, then Shaki and I went back to the kitty but she was having none of it and went straight under the bed. Shaki went back out and after a little while, she emerged, but refused to come anywhere near the carrier. Then Mommy came to have a go, she even made a trail of warmed up chicken, but in the end, she just had to pick her up, get her in, and quickly shut the door behind her. She was not happy and started crying, putting her arms through the gaps, then I basically made them leave because I could no longer bear it. 

Shaki stayed for a little bit so we could talk about some issues I am having with PetPlan, and she noticed my crochet. I’m now making a little version of her cat Charlie and some mice for the Cats Protection shop. People love my skills. 

After she’d gone, I went to the gym, and had a fairly crappy session. I had to do most of it in the wrong order, and my breathing was difficult, then the Victoria Wood news broke, and it was all just very poor. I remember listening to a cassette of her 1997 show as a child all the time. If you don’t know her, search out her work. Hero. 

The 21st of April. 

Oh, for fuck’s sake, now Prince?! This year is the worst. It truly is. 

I woke up super early for a very brief phone interview with Paul Ross that my friend Alex who produces him asked me to do last night. I just had to talk about my experience of cancer (loads of death) and what I do now (Anthony Nolan). 

At the QE for lung function tests at half past ten, then Dr. Thompson. They’ve replaced all the machines, so the tests have changed, and they’ve got rid of the one I hate. We certainly got done more quickly than before, then I was back out where I found Mommy having a chat with a chap who had recognised me from haematology clinic. He’s had a lot of the same GvHD as me, and his son and nephew have both had leukaemia as well which is very unusual. He told us about a drug that might be able to alleviate some of my symptoms but I need to talk to haematology about that. Dot, who is the sweetest nurse in the world, called me in, and told me how much she liked my hair before leaving us with Dr. Thompson. He asked how I’d been feeling, and I said I was generally okay, which surprised him because I had the worst results he’d ever seen. Kind of a kick in the face. He’s prescribed me an inhaler I have to do twice a day and we hope that might make a difference. 

Got home, had lunch, then went back out to Sutton. I needed to return an Ivy Park crop top that was too small, pick up some boring bits from Boots, and to see if Waterstones had Sara Pascoe’s book but they didn’t yet. They’ll text me when they do. Then off to Tamworth to Hobbycraft so I could get some safety eyes for the mice but they had none, so I bought some wool instead. We also went to John Lewis to look at some garden furniture, but I ended up buying a blanket which had been reduced from £65 to £19.50, and I now might hide under it until this year is over. 

The 17th of November. 

I have had to spend my day looking after Nick who is very sad. While I was eating my breakfast I could just hear him doing constant tiny sad mews until I went in to see him. He will get used to it – he already had to say goodbye to two siblings and he was alright, so I’m sure he’ll be okay. 

I have literally only left him to eat. Blogged this morning, went to see Nick, ate lunch and did a bit of crocheting, back to Nick, now I’m back in the living room doing this and I can’t hear him mewing which is a good sign. 

I have booked The Savoy Grill for my birthday lunch but Christine can’t get the day off so I have to decide what want to do. Stupid work making her go to a conference. 

Oh, and I’m still coughing. Obviously. 

The 18th of November. 

Early morning. Haematology clinic. Got the wheelchair out of the car and turned it on to find it hadn’t been on charge so I only had half a battery which always feels like it depletes quickly. It was wavering between 1/4 and 1/2 by the time I’d driven up to the clinic building. We waited around there for an hour and a half until Ram called me in. Everything is fine, he’s going to nudge Andy Toogood about doing a good density scan so we can check on my spine, back to see him in three months. 

I didn’t trust the wheelchair to get me very far by the time we got back to the car, but I wanted to briefly pop into town, so we borrowed a manual chair from the Bullring shopmobility. I had been made aware of a shop that sells American fare, and I wanted to get some brownie batter Oreos. I plan to put them in my own brownies and they’re going to amazing. I was also craving a salty pretzel since the German markets are back in town so we braved the rain for one. 

Nick is still bereft. Sad, tiny mews coming from the back room. Poor kitty.