Archives For March 2015

The 28th of March.

There is not a great deal to say about today as it has been driving to Wales for the most part. I got up at nine and we all just did basic morning things plus packing before setting off. We stopped at the Starbucks near Oswestry for lunch where I had a ham and cheese toastie, and got an oat and Nutella cookie for the rest of the journey which ended up being disappointing. We saw loads of frolicking little lambs on the way, in fact there are some outside the window of this house we’re in. It’s one my Aunt and Uncle have rented but they aren’t arriving until Monday, so we’ll be here tonight, have lunch with.Taid at The Hayloft, then drive home. I don’t think I’ll have lamb though.

I have been thinking about my “terminal” status and I think I might change that. By all means, I’ll still did before I thought I would; something is bound to get me. But I’ve lasted a lot longer than was expected, and why can’t I carry on? So long as I take care of myself the best I can, I think I could have maybe a good couple of years? Maybe I should be more optimistic.

The 29th of March.

Well both my parents had terrible nights, what with the wind and the downstairs neighbours apparently having some sort of race at about two am. I slept through all of this because I had a Zopiclone as I didn’t think I’d sleep well in the incredibly squishy bed.

We made a mad dash from the front door to the car in the pissing rain to drive to Conwy for actual coffee before picking up Taid to go to The Hayloft. That was all perfectly pleasant – Taid and I had the same meal of vegetable soup, then roast beef. The soup tasted mainly of tomatoes, but the beef was good.

Mommy and I left the table to look at the food shop while Taid and Daddy finished their coffee/beer and paid. We got some presents for Christine and Grandma, before going back to Taid’s house, where the piles of papers and post have grown even more. Now, I’m not saying he’s boring, but there was a half hour conversation about rubbish and recycling collection. He always says I’m quiet but that’s because I’ve got literally nothing to say on the topics he brings up. Daddy tried to fix his hard drive recorder but the only thing to do is format it, which Taid doesn’t want to do.  

We left just after four, only stopping so I could get water and Sour Skittles. Home about seven, and new I am trying to get warm and watching The Big Painting Challenge. Tired.

The 26th of March.

Today I feel kind of listless and restless at the same time. I slept in, and spent the morning breakfasting and blogging before getting dressed – if I got dressed and put steroid cream on first, breakfast would have been very late. At noon, we went out to Tamworth because Mommy needed cards from Hobbycraft for the cross-stitches she’s done for Easter cards, but they had none of the right size. However, I got a hoodie for the gym from H&M, so it wasn’t a totally ways trip.

This afternoon, I have made the bunny’s ears, and tonight I shall make the tail, then sew it up.

I am very sad about the plane crash in the Alps, and today there is news that the co-pilot deliberately crashed it to commit suicide. One of the few reasons I haven’t killed myself is because I know how selfish it would be, to hurt the people I love like that. But to take 149 other people with me is beyond my comprehension.

The 27th of March.

Okay well suddenly we have a plan. Igor phoned me this morning after Katie had been to flush my line (one lumen dribbled, the other did nothing), and Ram had indeed spoken to Andrew this morning. They had a long discussion and the plan is that on Tuesday, Igor will take my line out, and on Wednesday, Andrew’ll put a new apheresis line into my femoral vein. Which is in my groin, if you weren’t aware. Fun. Also my there’s a chance that once the line comes out of my chest, the vein could block and stop the blood getting above there, so we’ll need to watch out for that. It’s unlikely, but possible. It’s fixable if it does happen – our friend the stent.

This afternoon I was back at the gym before probably being off for a week – we’ll be in Wales this weekend, then Monday in Miss Jackson’s funeral, Tuesday the line comes out, Wednesday the new line goes in, then I’ll need to recover. I am definitely getting stronger and it feels so good. Today I made my own breakfast and coffee for the first time since last year.


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 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 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 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 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.