The 24th & 25th; I’m already super-antsy to get off the steroids again.

The 24th of March.

I’m already super-antsy to get off steroids again. My face isn’t swelling yet (I don’t think) and I want to be steroid-free again without going through much moon-face hell. I am desperate to get all my hair chopped off again and that does not look good with hamster cheeks.

I was up early to be at the dental hospital for 9.15. I saw Neil who is good, and he observed the small ulcer under my tongue, but I’m doing all the right things to deal with that. A dermatologist was also there, I’m not entirely sure why but he was perfectly nice. Mrs. Richards also came to have a look and she was quite happy. Back in three months. When we were done, we went to House of Fraser to get a 1mm crochet hook for me to practise micro-crochet with, then to Waterstones for Them by Jon Ronson and Reasons To Stay Alive by Matt Haig, but also ended up with Her by Harriet Lane and Forensics by Val McDermid. I have a problem with book-buying.

This afternoon, we had cheese on toast and Fiona Cairns Easter cupcakes for lunch, and I had a go at the micro-crochet. Then my wool arrived in the post, so I’ve made two bunny legs since then. I will get through my orders!

The 25th of March.

Well, the big news of today is that Zayn has left One Direction. I was in the gym when I found out. Frankly, I am not all that bothered. I am curious to see what happens.

Anyway, I was able to have some form of a lie-in today which was lovely, and this morning I made a bunny leg. After lunch, Mommy took me to the gym, but as we arrived, I realised I’d forgotten my heart rate monitor watch, so we went all the way home to get it, then back to the gym and this time I did actually get out and go exercise. Today, the boy who likes to smile at himself decided to read the paper out loud,and there was a lady walking around in hand who does not work there. If you are wearing jeans at the gym, you are doing something wrong.

I had a text from Igor and he has contacted Andrew again in regards to getting me into his clinic, and Ram will call him tomorrow if he hasn’t responded. For God’s sake, is it so hard to get this fixed?


The 22nd & 23rd; At least it seems the 5mg of pred is working.

The 22nd of March.

Well I am just thrilled to be telling you that Oscar the smushy kitty that I want to catnap was just in our garden, so I decided I’d see what he’d do if I opened the door, so I unlocked and opened it, and he didn’t run away! So I went onto the patio and after a little bit of coaxing, he came up to me! He smelled my hands, then once that was alright, he let me stroke him! However, Mommy then tried to take a photo and her presence scared him back down the garden. I gave him a minute, then slowly followed him and we had another little stroke on the step of the bridge. Then he decided to go and play with the frogs again so I thought I’d leave him then. But I’m so happy!

I had a Zopiclone last night let myself sleep until just after ten, but then I did feel it was time to get up. I watched Sunday Brunch, had lunch, then we washed my hair. This afternoon, I’ve crocheted an apple as I can’t finish the bunny until my new wool arrives. I then got ambitious and tried to start a pair of socks, but I was incapable of deciphering the pattern, so that project was unravelled. I might try an aubergine.

Two days off furosemide and my right arm is starting to get boggy.

The 23rd of March.

At least it seems the 5mg of pred is working. The rash is slowly fading, and last night my toes weren’t as itchy. I think the fingers and toes have been helped by using a stronger steroid cream.

We went out late morning for a trip to Sutton that was rather unsuccessful, as I only got one of the three things that we went for. I’m at the dental hospital in the morning so we can try again in town. Anyway, I agree lunch in the car before my chiropractor appointment at quarter to one. It was much better than last time, so my next appointment is in four weeks instead of three.

Then I was back at the gym. Not so much entertainment there today, just a man who was jumping really high onto some boxes. It was very impressive, but I refrained from applauding after the first jump (I think it was the first time he’d done it) because I wasn’t sure it was appropriate. I am hoping he is an athlete or a policeman, not a criminal, as those are the only professions I could think of where you need to jump that high.

Tonight I’m finishing an aubergine I’m making for Christine. Hopefully my wool comes tomorrow!


The 20th & 21st; Yeah I’m back on steroids.

The 20th of March.

I was woken by Mommy coming to tell me that the cute grey kitty with the short legs was sitting outside Christine’s bedroom window, and his name is Oscar! I now feel we must catnap him. I’ll put up posters saying “Is this your cat? NOT ANYMORE.” Then we watched the eclipse through binoculars on a piece of paper, before I was fully steroid-creamed and got dressed.

This morning I did a blog post, then shortly after lunch I went to the gym. I went earlier today so as to avoid the guy I keep seeing who uses the mats when I want to and it makes me irrationally annoyed. I did end up having a chat with a huge man that I have seen a few times, and he was asking how long I worked out for etc, and he thought I was a runner! I found this rather amusing as I’m not sure anything could be further from the truth. I don’t even have the physical capability to run.

As we got home, we saw Becky coming home from school, having spent her afternoon making cornflake cakes. Her dad has flu though so I didn’t get too close. I can’t afford to get poorly again.

The 21st of March.

Yeah I’m back on steroids. My fingers and toes get so goddamn itchy, especially at night. I couldn’t stand it any longer, and the rash hasn’t even got the slightest bit better. I decided to stop taking furosemide today too, see if my arms swell up without it.

Daddy and I went out at half eleven to see Chappie before it isn’t on anymore. It was okay. A lot of it was quite clearly a metaphor for God – “Maker, why did you make me so I could die?” I particularly didn’t like the scene in which the kids were throwing rocks and setting Chappie on fire – it was almost like watching child abuse. Also, everyone had terrible 80s hair which I couldn’t understand.

We then proceeded to watch rugby all afternoon, getting very stressed at the crunch. In the prelude to said crunch, I read the last bit of So You’ve Been Publicly Shamed and it was really good. So interesting. I should really read Lost At Sea, seeing as it’s upstairs. Apparently, I must read Them too. So they’re on the list!

Tonight, Mommy and I went to Bank to celebrate Lauren’s 21st birthday! My little one, being a proper grown-up now. I’ve known her nearly 10 years and I’m so proud of the woman she’s become. So the food came and the bubbles flowed and we drank to my friend. I am so full and tired. Sleepy bear.

 


The 18th & 19th; I have literally just got my face back.

The 18th of March.

I hate having emotional outbursts at doctors. I had haematology clinic this morning, so we arrived at ten, and for two and a half hours I read So You’ve Been Publicly Shamed and I’m two thirds through. Ram finally called me in at half twelve and we discussed my arms and the rash I’ve got and how this is all really messing with my mental health. Having looked at the rash, Ram doesn’t think it’s GvHD, he thinks it’s infection so I’ve got ten days of fluclox (more joy) and steroid cream, and hopefully one of the other week get it to bugger off. I went on quite a rant about how my swollen arms and the idea of steroids completely crush my self-esteem and make me totally depressed. This left him pretty speechless, and after some silence, he suggested I meet with Ang who runs the counselling service, so after we’d finished, I had a chat with her. I’m not sure if I’ll go for a full session yet. Oh also, I have a fan – a man came up to me while we were waiting and asked how I was doing, then proceeded to tell me how great and inspirational I am, and how he was going to tell his wife he’d met me. So that was nice to hear.

After a quick lunch when we got home at two, I was back at the gym. It takes me so long to do so little, because my rests take up so much of the time. So puny.

Tonight, I’ve given Daddy a Creme Egg to cheer him up, and Hamilton fell down the hole in his second floor where the ladder used to be. Must replace that.

The 19th of March.

Rest day today. I went to Black Sheep (Michaela has bought her salon and renamed it) to get my fringe trimmed at half past ten, then we went to Pets At Home to get a replacement ladder for Hamilton and some more wood for him to chew, then to M&S to get some more juice, a pretzel and other such exciting groceries.

This afternoon, I’ve done the body of a bunny and part of the head which I’ll probably finish tonight.

I am just really concerned that my rash is GvH, not some infection like Ram thinks. Obviously I’ll carry on with the antibiotics and steroid cream, but I think systemic steroids are probably inevitable. And that’s a crushing thought. I have literally just got my face back to its actual size, and it would be devastating to lose that again. I hate not looking like myself. I know it stems from my anorexia, and I don’t have a desire to lose weight anymore, but I have serious emotional problems with my body not looking the way it naturally ought to. I’m not asking for anything drastic, I just want my arms and face to be the right size! Is that so much?






The 16th & 17th; Frankly I’m not sure I want a normal lifespan.

The 16th of March. 

Well I am still avec plumbing which was not the plan. Igor texted me at quarter to ten last night to say he’d not heard back from Andrew, and Ram wanted him to be in the loop before we take the line out. So it’s still in my chest and I’ll have to continue with furosemide until it comes out.

This morning I did some crocheting and wrote up a blog post, then after lunch, we had a trip into Sutton to get Lauren’s birthday card and a couple of warm, long-sleeved gym tops that will accommodate my arms, then Mommy actually took me to the gym. I was there until about half past five, and I noticed a disturbing trend developing among boys/men of having their hair shaved at the sides and a teeny tiny ponytail on top. They look ridiculous, and I can’t even imagine how they look when it’s not tied up.

Tonight I’m going to have to try and relace my trainers as Hamilton has eaten part of one lace and I can’t get it back through the hole. Bloody hamster.

The 17th of March.

UGH fuck I hate days like this. I didn’t feel like doing much so I’ve had a rest day, just finished off the elephant I’ve been doing, bunny next. But that is not what has me upset, obviously.

Igor rang earlier to say he’d spoken to Andrew, and he is very reluctant to do a stent because photopheresis is only expected to continue for several more months, not years. Apparently there are long-term complications. Also, they expect me to have a normal lifespan. This is news to me. Frankly, I’m not sure I want a normal lifespan because if that happens, who is going to take care of me when my parents can’t? I’d rather kill myself before it got to that stage. I hate to say that but it’s true. What am I supposed to do?

Anyway, there are other issues. Clearly venoplasties are no longer effective, this line isn’t working properly anymore, and it looks like my skin is flaring up but we can’t confirm that until all my blood vessels recede from the surface. I suspect it has though, as my fingertips and toes are increasingly sensitive, just like they were in Paris when it flared up then. So I might have to go back on steroids which would be a fucking horrific prospect. Joy.





 


The 14th & 15th; I cannot believe just how lucky I am.

The 14th of March.

Today has been a day off extremes. This morning was Saturday Kitchen and a blog post, but no Guardian as Daddy had taken the Galaxy to get a new tyre, so Mommy hadn’t gone shopping. Thankfully, he was back by half past eleven which was when we wanted to go out to brumyumyum at King’s Heath for tasty streetfood! I had a Chorizcow burger from The Flying Cows and Mommy had a toastie from TSK Brunch. After getting grease all over my face and fingers, and being grateful for the wipes in my bag, we went to Bake to buy masses of cakes from the two lovely baking fellows. A red velvet bundt, a raspberry cheesecake pie, a double down brownie and a black and white cookie sandwich. I ate half of the cookie sandwich on the way home, but then I was stuffed.

After indulging in all that, I really felt I ought to go to the gym, so I did my two o’clock aciclovir and mouthwash, then Mommy took me there. I worked out for about two hours, although it was freezing – I couldn’t seem to escape the air conditioning. Since returning home, I’m not sure I can manage any tea, and I’m still trying to warm up. My arms are squidgy again. I’m so glad the line is coming out on Monday. Then some of my problems will abate for a while, at least.

The 15th of March.

Today has been Mother’s Day, so I thought I’d take the opportunity to tell you about mine. Not much has happened today anyway, besides Grandma coming over for lunch.

Anyone that knows her, knows just how spectacular she is. Before I became ill, she was the Hospitality and Events manager at the Birmingham Hippodrome, and continued in that position until my liver transplant, because by then she was with me full-time and work wasn’t possible. But for as long as she could be, she was with me before and after work, whenever I needed her.

Besides me, she also had my sister to support through leaving home, and her own mother who has Parkinson’s and add my health improved, hers declined. In 2013, there was a period during which my Grandma and I were in different hospitals, and all Mommy did was shuttle between the two of us and home.

When I am at my worst she is there. She will stay up with me all night while I rock back and forth in pain, get my food and drink, take me anywhere, hold me as long as I need. She is literally everything to me – without her I would be completely lost. She must be exhausted and angry and sad so much of the time yet she never complains or snaps. She is strong, funny, kind, selfless and the only person I could wish to be my mother. I don’t know anyone who comes close to her. And she gives me a daughter’s day card. I cannot believe just how lucky I am.


The 12th & 13th; The red lumen refused to bleed at all.

The 12th of March.

What a long day it has been! Up at 6:45 to be at the QE for 9 to have two bags of blood before photopheresis. So that you until about one o’clock, then I actually got on the machine. My line didn’t really want to cooperate so it was pretty slow. Igor came to see me about it and I showed him my arms that are still squidgy, and he sees that the venoplasty hasn’t completely worked. He’s going to talk to Andrew again. I just basically want this line of and a new one in with a stent around it please.

I was finally able to leave just before four, and to cheer me up after such a long day, we went to Waterstones and I got Jon Ronson and Malcolm Gladwell’s latest books, then we got pizza for tea from M&S because we hadn’t got anything out of the freezer.

Upon getting home, there was a note from DHL because they’d tried to deliver my Mother’s Day present while we were out, so Daddy took me to their main depot which is thankfully not far away so I was able to pick it up. Then we came home to pizza and I’m pooped!

The 13th of March.

Just over three hours at hospital today. I got up at nine and had time to do a blog post before Daddy took me to the QE for day two of photopheresis. I decided against going to buy coffee or lunch because I just wanted to get on the machine as I knew it would be slow again.

And I was correct. The red lumen refused to bleed at all, and the blue one only gave out the most pathetic dribble. Miraculously, I did manage to get going on the machine at a very slow rate on single needle. I relayed all of this to Igor via text, and he came to see me. We had a chat and decided the best thing would be for him to take the line out, then Andrew will have to put a new one in with the stent before my next photopheresis session in a month’s time. So we’ll do that on Monday.

We left about quarter to three, meaning it was too late to go to the cinema so we just came home and I had my lunch. Since then, it’s not been terribly exciting. I caught up on The Supervet and watched Rhod Gilbert try to be a fighter pilot. Now Dermot’s dancing for Comic Relief and we’re about to have tea. Such a busy girl.


Follow

Get every new post delivered to your Inbox.

Join 2,813 other followers