Archives For April 2016

The 28th of April. 

Now my right elbow hurts for no apparent reason. Just another ailment to add to my list. Maybe if I have a bone scan, something will come up there. I can but hope. Or it’ll go away by itself, whatever.

This morning I blogged, and managed to get dressed in the normal way, although my right shoulder is still sore. Oh, how I wish I was able to take ibuprofen. 

After lunch, more gym. A lady I saw on Tuesday was there, and when I saw her then, she had doused herself in body spray to such an extent that it made my face hurt. Today, she wasn’t quite as close, but still as pungent because I got a headache. I have a theory that is to filter weak men from the strong; if a man can get near her and not choke, he can potentially father her children. I can’t think of another reason. 

For the first time, I saw someone who I actually found hot. I’ve seen lots of guys with decent bodies but not good faces. So that was a novelty! I also was incredibly aware of my ribs all grinding together. I’m really glad I’m at the chiro next week. I’ll have to ask Trine what it actually is. 

The 29th of April. 

It’s been a very pleasant day but now I’ve eaten too much food and I feel like I might explode. Perhaps Rennie will be required. 

I couldn’t bring myself to watch James Martin on This Morning because it was so cringey, so I distracted myself with crocheting. I had to make arm holes for the Moomin, then attach the nose to the body. Sometimes I find reading the instructions is not helpful – I am much better at learning by demonstration and doing things myself. I eventually worked it out after some trial and error. Just the ears, eyes, arms, legs and tail to do. 

This afternoon was Captain America! Funnily enough, my timehop showed me that on this day four years ago, we went to see The Avengers. The trip didn’t start off brilliantly, as I hit my head on the roof of the car when getting out. Clever. The cold wind was very soothing. 

I decided to have the free popcorn (Gold Class – when the film is 2 1/2 hours long, I want a comfy seat) and they have made it huge! I’m so glad I didn’t finish it or I’d feel even worse right now. I won’t give any spoilers, saving chat for people who have seen it. Safe to say that in the 147 minutes, none of it feels wasted. Except the Spiderman stuff, he can fuck off. I have no time for him.


The 26th of April. 

My pity party is over. 

I woke up this morning still feeling pretty crappy, and I wasn’t sure what I was going to do with myself. My shoulders still ache from yesterday’s injections and paracetamol hasn’t done much to help. When getting dressed, I was in two minds as to whether to put my gym clothes on or not because of the pain  (I could only get my bra on by doing the “front and swizzle” technique), but I decided that going would make me feel better, so on with the leggings and hoodie it was. 

Mommy was out most of the morning at Grandma’s to review her care plan, and returned just in time for lunch. We were supposed to be having a new chest of drawers delivered between two and four (replacing the plastic ones in my bedroom, aren’t I fancy?) so we ate fast to get me to the gym so Mommy could be home to wait for the chap. 

I had a really productive session! I put on Lemonade for the first time (the gym is a good place for listening to whole albums) and it is magnificent. I love it so much. Daddy Lessons had me doing involuntary toe-tapping and Freedom is my jam, it made me feel all kick-ass and I am not going to let this lung business beat me. My lemonade will be excellent speeches I write for Anthony Nolan and I will do my best to ensure this is not the result for more families. 

I’mma keep running ’cause a winner don’t quit on themselves. 

The 27th of April. 

Sunshine and raspberry sorbet hair. Why it isn’t lavender is a mystery, but James said he’ll fix it for free when it fades out because he is lovely. It still looks excellent so I’m not disappointed. 

Not a great deal to report on this morning, as we were out of the door by half past eleven. On the way to Black Sheep, it started to rain, but thankfully we had the emergency brolly in the car. James painted my hair and was very perplexed by the pinkness, considering he mixed purple and blonde, but no matter. Michaela appeared, so we had a chat and I recommended my new moisturiser to her (Lush Dream Cream, great for eczema and my skin is super soft). She loves the pink but she loves everything we do with my hair. 

Came home and had lunch, then the rest of the afternoon was pretty open, so I decided this was the perfect opportunity to get a new hamster. We’d bought new food and bedding just before Hamilton died, so it seemed only sensible to use it on a new hamster! We arrived at Pets at Home, and I stared at all the hamsters for ages until I settled on one. There was one who was showing off but he didn’t have a cute face so he was out. I liked a white one with a grey face (so we’ve named him Graham) and after some coaxing, he came out. New hamster pal!

The 24th of April. 

Last night at Tiff Stevenson was great fun. I haven’t been to The Old Rep since I was at Hallfield and we went to see George’s Marvellous Medicine. It feels a lot smaller than it did then; row C was really quite close to the stage. I just wish the lady in front of me hadn’t been there as she was drenched in perfume and it kept making me cough. The show was really good – I was surprised to hear her talk so much about Black Lives Matter but she was really well-informed and we all did lots of clapping. After the show, she was in the bar so we had a chat and a selfie in which I looked awful. I need to just smile instead of pulling a face. She’s in the cool gang. 

Today, I’ve been trying not to succumb to the heavy cloud. For some reason, I decided to Google bronchiolitis obliterans (the technical term for what I have) and I found some information saying that once it develops, most patients die of respiratory failure in five years. I already seven years post-diagnosis. What does that mean for me? How long do I have left like this before I get even worse? How I’ve been was okay, I could cope with that. I am really scared that I’m going to lose the tiny amount of independence I have left. What if I become so breathless that I need the wheelchair even more? To the extent that I can’t wash and dress without gasping for breath? I really don’t know if I can deal with that, and suddenly it feels ever so real. 

The 25th of April. 

My shoulders ache this evening. More jabs today. I can understand why babies find it so distressing – it doesn’t just hurt at the time, every time I raise my right arm, I am sore. I am having lots of paracetamol. 

My mood has slightly improved; I do not feel quite so morose. I don’t know how proactive I can be about my breathing, I’ll just have to go to the gym as much as possible, really build up my muscles. I got my appointment for my next set of tests in October. Maybe I can improve things by then. 

For most of the day, I have been crocheting. I am making a Moomin to take to Robyn and Stu’s in May, and so far I have done the nose and the body up to the armpits, so it currently looks like a rather large nappy. We had to go out just after two to go to the GP, and today there was no palaver about what I was to be vaccinated against. Two in the right arm, one in the left again. Two more lots to go; one in a month, and the last one in seven months. 

Before going home, we went into Sutton because I had had a text from Waterstones to inform me of the arrival of my copy of Sara Pascoe’s book, and while there, I also ordered the new Harry Potter book because y’know. We went to Tesco too for some naan bread because we’re having curry tonight and the naans at M&S were unacceptable. 


The 22nd of April. 

I had a really terrifying dream last night that the Grim Reaper was following me around and I was trying to hide from him on the sofa. I woke up very scared and had to listen to a podcast to distract myself from what was going on in my brain. 

Today has been recuperation from yesterday’s business. I did a blog post this morning while drinking a poorly-made coffee, then I returned upstairs to get dressed and I spent a good ten minutes taking selfies because I was feeling myself. 

This afternoon I crocheted a smaller mouse (I did one yesterday with a slightly larger hook). I think I need to give them noses because right now they look a little bit Voldemort-esque. Christine has come home for the weekend again and we’re trying to decide what film we might go and see tomorrow. 

Ugh I am so sleepy. I might have a Zopiclone tonight, I really would like a break from all my scary and stressful dreams. I don’t know why my brain is being so unfair to me while I’m unconscious.

The 23rd of April. 

Okay so I think my breathing is definitely worse. Maybe I have been in denial about it. If it is, I’m going to have to work out a way to make things as easy as possible, because if I continue to go downhill, I’m not sure how long life will be tolerable for. If I get to a point where I feel like I’m gasping all the time…well I don’t know. 

Sorry about that. On a cheerier note, I didn’t have any scary dreams last night, and I had a nice, chilled morning just reading the paper and actually doing the sudoku with no assistance from an app. 

A slightly earlier cinema trip than usual, as Daddy wanted to be back in time to watch the football. We decided on Bastille Day, and upon our arrival at StarCity, none of the click and collect screens were working, which was most frustrating. We had to go and queue behind all the people buying food which takes forever because they all seem rather inept. Once we finally had the tickets, we had to get the radar key to get up to our screen in the lift, and we got to our seats just in time to see the trailers. 

Film was fun. Idris Elba playing a kind of rogue CIA agent who plays fast and loose with the rules and has to stop the corrupted French police stealing the national reserves. It’s all a bit silly but we enjoyed it. 

Came out to a text from Becky to say they had adopted some kittens! I immediately went round as soon as we got home. They’re super small and adorable, just nine weeks!

Aaaaand tonight I’m off out to Tiff Stevenson. Busy girl. 

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 18th of April. 

Oh God, I am so bored already by all the Brexit/Bremain talk. I’m still not sure which way I’ll vote but nobody is swaying me either way. I’m going to have to try to find unbiased information and go from that. Tricky. 

I went outside today, decided to break the monotony. This morning, while doing my blog post, I had a minor revelation. I suspect the reason my neck always hurts on one side is because of the way I sit when blogging, so I’ll have to adjust that and see what happens. (Calm down.)

Gym this afternoon. I was working my way through my routine, nearing the end, when I saw Hoarder Lady from across the room on the bikes. I could see that the mats were free, so I decided to bin off my last two machines and go straight to the floor. Yes, I am that petty. Then I left at a good time because Happy Clappy Chap turned up as I was going out of the door. 

Monica seems to be my friend again. I have given her lots of belly rubs. 

The 19th of April. 

It has been a good day because I got to squidge a baby. This morning, Mommy was out at Joan’s funeral, and after I finished my breakfast, I went to sit with Monica. However, I ended up not staying very long, because after running up and down the room like she’d been at the cat mint, she did a horrifically smelly poo and I had to leave. 

Ellie came round with Esmé after lunch, and we had a delightful afternoon of Disney films, smiles and squidges. She is teething, so very drooly, and had a bit of a grumble when she was needing some food, but otherwise we still had a lot of fun. She’s grown so much in the 9 nine weeks since I last saw her, we can’t leave it that long again. I just love to look at her; she stares back at me, so wide-eyed, mouth open, and I wonder what she sees. Everything is new and exciting for her. Ellie and I managed to have a bit of chat but it was mainly in baby voices to Es. Can’t help it. If I could have my own children, no one would ever hear my normal voice ever again. 

The 16th of April. 

I have just done my nails with a very gloopy base and top coat and it looks most unsatisfactory. Will have to redo those in the morning. 

I’ll warn you now, this is going to be a pretty dull post. A very standard Saturday, except for the fact that it started with snow. As you do, in April. Yet for the rest of the day, it has looked lovely apart from an apparent hailstorm which I missed. My morning consisted of writing up a blog post, then reading the Weekend Guardian. Such excitement. 

This afternoon I was getting Monica to be my friend again. I essentially had to sit in the room with her and give her a lap to sit on when she wanted it  I also may have bribed her with a Dreamie or two. I think we’re pals again now. She let me look at the bits she’d been licking excessively and they look alright now. I have someone coming to view her tomorrow, fingers crossed that goes well. 

Last night I had a dream that her room was full of other cats, two dogs and a fox, and I had to get rid of them all by putting them through different windows. It was very stressful. 

The 17th of April. 

Nails are fixed. Although without base or top coat so don’t look particularly great. I’m sure this is just fascinating. 

Monica decided to be really unhelpful for most of the day. Something obviously stressed her out in the night so she’d had a huge go at a patch of skin and it didn’t look happy. However, she clearly didn’t want me to do anything about it, as every time I went near her, she would run off under the bed. This wasn’t great for when the couple who wanted to adopt her came round. 

She made a few appearances, but refused to be sociable. They could see her, but not touch. I had to show them pictures of her on my lap and things to prove that she is actually friendly. They have another cat so hopefully they will become chums, then if both humans are out, she won’t get too upset. They decided there and then that they want her, so they’re coming back for her on Wednesday. 

This afternoon, she’s been herself again, sitting in my lap, not over-grooming, behaving in a way that would have been ideal earlier. She’s so perverse.