Archives For haematology

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. 

The 22nd of September. 

Is it weird that I still have dreams about being at school? They’re always similar – I’m either doing GCSEs or A-levels but they won’t count, so I don’t need to do any of the work, and I’m still ambulant. I wish they’d stop. I have no desire to be back in education. 

This morning I did a blog post, then had to fill in forms for the O2 Academy so I can have a disabled space at the Death Cab gig and for my new CEA card so I can continue to get free cinema tickets. I hung out with the kittens and they were freaking out about the heavy rain because I don’t think they’ve experienced it before.

This afternoon I went to the gym and saw none of the regulars, except the chap who always wears a hat. I was coming toward the end of my routine when my headphones started having a fit and I wasn’t getting all the sound. I can’t cope with the gym music so I finished early, and was in the middle of stretching when I had a phone call from Jen because someone wants to adopt the kittens! She’s coming to meet them on Saturday and we shall see how that goes. I will be sad, but then I’ll get some new ones. 

I have done the stripes of the badger hat this evening, now I just have to attach them, and I think that’s going to be tricky. 

The 23rd of September. 

Another day, another clinic. Awake at half past seven, no time for coffee so I had to pick up some filth from Costa to wake me up lest I drop off in the waiting room. I read the whole paper, did the puzzles and had been trawling Twitter for entertainment when Ram called me in. There wasn’t much for him to do today, just wrote me a massive prescription so I don’t have to see him for two month. We took it to pharmacy and got a copy of heat to peruse while waiting. 

Went into town when we were finished to get facewipes and handcream because they are on offer and I have only one packet in the house. We got home at half one and I was starving so I had no doubt the kitties were too, so I fed them straight away before making my own lunch. I spent the rest of my afternoon doing more of the badger hat and watching stuff on the box. Not massively productive. 

I am very much looking forward to London, Lauren and Naomi tomorrow. Plus Timberyard which means crodough!

The 25th of August.

I’m a very sleepy bear today. I had a reasonable sleep except for a distressing dream about spiders which I know is because of several news articles about all the massive spiders coming into our homes soon. Not looking forward to that. 

There wasn’t long this morning before going out to meet Vicky for lunch. We went to 6/8 for a change and had nice coffees and New York pastrami sandwiches. I drank a lot of water with mine because of pepper. My mouth is pathetic. It was so nice to hang out with one of my few cancer survivor pals. She gets it, and she understands my feelings of having no real purpose, not knowing why we’re here. We’re slightly different in that she is really pretty good now – her body functions quite well. But she still can’t work out have the sort of social life one would expect. It’s just hard, and it’s nice to have someone who understands. She thinks I should try again to get Daddy to let me get another cat. 

On the way back, we went to Becky and James’ new house and they’re already ripping it to pieces. There’s hardboard everywhere, random plug sockets, a picket fence suspended ceiling in the kitchen. Right now m it seems grim,but we can see the potential and once they start getting the rooms done, it will be really lovely. The bigger picture is hopeful. 

The 26th of August.

The day started abruptly at 3am when I suddenly woke up and felt something cold and wet on my leg. I turned on the light and pulled back the cover to find an enormous patch of blood and the dressing on my leg totally drenched. It was from my clexane injection on Monday which had been bleeding in the day but only a tiny amount, so I was somewhat alarmed! I had to go and wake up Mommy who took the duvet and cover away to soak out the blood, and we added a huge wad of gauze to the dressing and stuck a mepilex over the top.

When I woke up again at 7, the blood was trying to seep through that, so we added another huge dressing to hold it down and we’re grateful I had clinic this morning. We got there at quarter past nine but didn’t see Ram until quarter past eleven because it was so busy. We gingerly took the layers of dressings off and found them utterly sodden, but the bleeding seemed to have been stemmed. Cleaning it knocked the scab so it started again, and I have another dressing with some extra gauze underneath. 

We needed some photos printing so had a quick trip into town for that, and I bought a Corker from Selfridges. We saw an installation by Macmillan who have a cube which you can get into, but not see out of and can only hear stories from cancer patients. It’s supposed to represent the isolation that one feels when diagnosed and going through treatment. Exactly what I was saying yesterday. No one understands unless they have been through it. It’s so lonely. 

This afternoon, I’ve finished one hat and started the next. I’m not taking any more orders for now.