The 15th & 16th; I’ve got loads of Tramadol.

The 15th of April.

Sweet baby Jesus my back has never hurt this much. I spiked yesterday evening and again at 1am, so I’ve had barely any sleep. My back now just hurts constantly at a fairly high level, then I get breakthrough pain when I move and sometimes when I do nothing.

I had clinic today, so we arrived at about ten, waited for three hours and was finally seen by Ram at one. I was almost in tears by this point, and nearly broke down when trying to describe the pain. I’ve got loads of Tramadol, starting on 200mg a day and if that doesn’t work, I can double it. We had to get a massive order from pharmacy, three huge bags, so I gave them my prescription and we went for lunch while we waited for an hour. I was starving.

Oh and no results from any of my tests were back yet, so we have to ring up tomorrow. Ram said depending on what the x-ray shows, I’ll probably need an MRI which I can’t currently imagine as lying flat is incredibly painful.

Getting out of the chair after five hours was no fun at all, I was incredibly stiff, and since getting home, I have just stayed in the armchair. This is just awful.

The 16th of April.

Things are better today. I had two lorazepam last night which did help – I didn’t get up until about ten. I was a bit stiff, but once I’d got the Tramadol on board, it started building up inside my system and I can walk around a bit better now. The constant ache I had its basically gone, which is a huge relief. I also haven’t spiked since 1am yesterday, so I’m hoping that continues.

Today I’ve just watched tv that I don’t need to remember (Lorazepam makes me forget what’s happened in the day after I’ve taken it) and made the last two legs for Anna’s elephant. I’ve put that on pause for the night as I’m going to make a black sheep to give to Michaela tomorrow. I’ve also been through the new Hummingbird Bakery book which arrived in the post today, and there seem to be many tasty things I want to make, like the birthday cake cookies and chocolate doberge cake.

Igor just rang to see how I am (bless him), so I told him, but none of the results are back yet and there’s no record of the urine sample being at the lab, so he wants me to go in tomorrow at half one to have more bloods done and do another urine sample. He knows I need to leave by half two.

Right, back to the black sheep!


The 13th & 14th; I didn’t have a good sleep. Instead, I had a temperature.

The 13th of April.

Oh dear, this is not going well. I had another really bad night, tossing and turning. I realised the reason early this morning, when my back was killing me. I presume I did something at the gym on Saturday but I’ve no idea what. I had Mommy come upstairs to rub it for a little while before I had to get up. Every time I did move, I made noises like “Nrrghhh”. 

We had an appointment at the Apple shop for the laptop. Frustratingly, it didn’t show the issue, so it may be that it just needed a proper reboot, which is a wee bit embarrassing. We also bought several birthday cards, then I got a gingerbread man from Greggs to cheer me up.

After lunch, Mommy went to see Grandma, and I went upstairs to lie in bed with the electric blanket to try to warm up the muscles while I watched two episodes of Dexter on Netflix. It didn’t work. So I came back down and we watched the Oliviers, and I just have to hope that a good sleep tonight will help.

The 14th of April.

I didn’t have a good sleep. Instead, I had a temperature. The Zopiclone didn’t work, so I barely slept, and have been awake since about six with another temperature. I was still in pain, and felt totally awful. Mommy came up and helped me a bit, and she rang the hospital at half eight, spoke to one of the clinical nurse specialists, who said she’d ring back when she’d spoken to a doctor.

I managed to get myself out of bed and dressed, and slowly came downstairs. We got a phone call at about half eleven, saying to go to 622 where I’d be seen by Sandeep. So off we went! I was actually feeling much better by this point, but considering how unusual it is for me to spike, we thought we’d better go on anyway.

I was in a small side room, and while waiting for Sandeep, Igor walked past, so he came and saw me instead. We talked a bit about my symptoms and pain, so I’ve had bloods done, plus cultures of both lumens, a urine sample and he sent me down for a back x-ray, in case I had a crushed vertebrae, which could apparently account for this level of pain. I have clinic tomorrow, so we’ll get the results then. In the meantime, I’m on augmentin.

After we got home and had lunch, I had a visit from Alice who I have come to know via Twitter, and who I made the aardvark for. We had a lovely time just chatting about stuff, life in general, and it was just nice. I don’t often get to meet new people.

The 11th & 12th; At least I don’t feel sad today.

The 11th of April.

I feel a bit sad this evening and I don’t know why. I had a massive sleep – early night, two Zopiclone, slept in until nearly ten. I spent the morning searching for the right wool for a special project, which is now on its way.

After lunch, I went to the gym, and it was there that I started feeling down, my breathing wasn’t good – I should’ve used my inhaler earlier in the day. I couldn’t get into the music I normally listen to, I was really cold – the air con was on full blast, and I just didn’t feel good about myself or what I was doing.

On the way home, we went via Boots as I needed some more handcream for the terrible dry skin on my fingers from the GvHD, and some leg hair removal cream as I’m not using that spray again – it went everywhere.

I hope this is just a bad day, and I feel better in the morning.

The 12th of April.

Ugh well I had a terrible night. I dreamed that a murderer was trying to get me and if I moved then he would, so I couldn’t go and fill my water bottle which was nearly empty in case I got murdered.

This morning was Sunday Brunch and hairwash, and this afternoon, I made Anna’s elephant’s head and we watched several things that were on the box.

I forgot to do my writing before dinner as I got distracted by The Lorax, so I just started during Masterchef. That was probably a good idea as it was quite stressful. Masterchef is always super stressful – I could never be a chef, I think I’d just run away and cry,

At least I don’t feel sad today.

The 9th & 10th; Having your blood messed about with is exhausting.

The 9th of April.

Today I have actually done things, so that’s an excellent start. I had my first ECP session with the new line, as we suspected, bigger line = quicker time. I was fine in less than an hour and a half! Julie noticed that it had leaked a bit (as in, blood was coming down the line) so we’ll probably need to flush it more than once a week as it’s not good to just let it sit there; it might clot. We happened to bump into Igor in the queue at Costa and he was very pleased to hear that everything seemed to be in this working order.

Had to go into Tesco on the way home because Mommy suddenly realised we only had half a swede and a parsnip in the vegetable drawer, so that really needed to be replenished. After we got home m Becky came over to borrow the pressure washer, then Mommy went to see Grandma and I went to de-hair my legs. Which I had to do twice.i I use the cream that burns the hairs off? But i think it might have gone out of date, as I have had it a while. So I went through all the motions once to find it hadn’t worked, but thankfully I had some spray that was unopened, so I used that and it worked. Now I have smooth legs!

I have started that body of Anna’s elephant this evening, then I’ve got a pig to do, then I think I can start new ones again!

The 10th of April.

Having your blood messed about with its exhausting. I yawned all the way to the QE this morning, despite having had coffee, bought more coffee and lunch, then got started ON ECP just before 12. Julie had got all the line flushing kit for me to take home already, so I just needed her to get Dr. Tim to rewrite the heparin prescription, as otherwise the district nurses won’t do the amount that needs doing. I read the paper and had my lunch, then Julie took the stitches in my chest out and we were pretty much done!

On the way home, I felt somewhat crappy as I was tired and the skin on my fingers has been damaged by the GvH so they were sore and I was just a generally unhappy bunny. Since getting home, I have crocheted a banana, and that it is all, really. I will have a whole fruit bowl, eventually.


The 7th & 8th; I feel terrible about it.

The 7th of April.

Another warm day! Surely this can’t last. I went out this morning with Mommy to take Christine to the station, then we went to the Apple shop. My Macbook Pro might have a virus, but every time I try to book an appointment, it tells me there aren’t any available. Ever, it seems. So I spoke to the lady on the door and I now have an appointment to take it in on Monday. Then we had a quick bimble around the Selfridges Easter sale and I got a Milka egg down from £7.99 to £1.99, and some Fiona Cairns cakes down to £2.99, so I think those were decent bargains.

Popped into M&S on the way back for cheese (v. important), then this afternoon I made the aardvark’s ears and tail, and now I’ve sewn him up so I can give him to Alice. Joan came round, wondering if Daddy was home as she’s having a problem with her phone, so I’ve promised to send him round as soon as he gets home from work. She was telling me not to get old; it’s no good. Don’t worry Joan, I don’t intend to.

The 8th of April.

I’m a sleepy bear today, I’ve obviously worn myself out at the gym. I spent my morning doing a lot of nothing, literally nothing productive at all. After lunch, Mommy took me to the gym. Got to (slowly) burn off those Easter eggs. While there, I stopped the doctor who did my ultrasound on Friday! Bit weird. Thankfully, she didn’t spot me. I did nothing different to Monday, but afterwards, I found I’d made my leg bleed, so we cleaned the site and put a new dressing on when we got home.

Becky came over for tea and to show us her and James’ engagement photos. They are lovely, despite the rather drizzly weather. She has been doing spin classes which sound like actual hell. No thank you.

I have very little to say and I feel terrible about it for the people who still read even when nothing interesting is happening. I have my first photopheresis tomorrow with the new line, and seeing as it’s so much bigger than the last one, in theory it should be even quicker! That would be fun.

The 5th & 6th; Sun on my skin.

The 5th of April.

My right foot looked good this morning, but it has got puffier as the day’s gone on, despite furosemide. I had a reasonable sleep, staying in bed until about nine. I watched Sunday Brunch in my pyjamas, then after Grandma had been brought over, we washed my hair and I got properly dressed.

I did a blog post, then it was lunchtime! Much lamb, then much chocolate. I’ve got through one egg so far. Sometimes I do wish I could eat more – my stomach is so small, and I think my liver contributes to it as well.

I’ve made two aardvark legs while munching chocolate. I’m not sure I’ll fit anything else in tonight.

The 6th of April.

Keeping a close eye on my right leg. It seems to be less bad as I’ve got socks on that aren’t tightly gripping my calf. I actually slept reasonably well last night – I think I was catching up on the sleep I’ve recently missed. So I was in bed until nearly ten, didn’t get downstairs until gone half past, so by the time I finished breakfast, the morning was nearly gone. I made an aardvark leg while catching up on TOWIE, then after lunch and half an egg, I thought I’d better go to the gym.

I spent a couple of hours there, just doing upper body work as I’m wary of stressing my legs too much right now. The bruise near the exit site is developing into many colours now. Delightful. Neil commended me on coming in a) on a Bank Holiday and b) while the weather is so lovely. It has been so warm today! I can’t wait for summer, it is my favourite. Sun on my skin, dresses, walking (if I can). I feel alive and warm and free.

The 3rd & 4th; Always happy to host multiple comedians.

The 3rd of April.

Another terrible night! I will be awfully distressed if I have a third one but I don’t want to take a Zopiclone as I don’t want to be dozy when Romesh comes.

This morning, we re-dressed my wound as it had bled a lot, then we watched Masterchef and The Truth About Fat from last night, because we watched the leaders’ debate then. I still haven’t decided who I will vote for, but I know it won’t be Farage or Cameron. Farage spouted pure bile, and I’m not prepared to let Cameron do any more damage.

After lunch, I took Christine to the gym with me because I can do that on Fridays. I just did arm and chest work – no legs today. I noticed while there that my right leg is significantly larger than my left. My foot was puffy this morning, so I took 40mg of furosemide but it hasn’t helped – I’ve just swelled more.

Upon arrival home, I had a little cry at the futility of my conflict with my body, then texted Igor to find out what we should do. And back to 622 it was. Now it happens that the junior doctor on today was a girl that was in my year at school. Not weird at all. The reg decided to send me for an ultrasound to rule out a clot or haematoma. The porter came to get me, and two nice doctors scanned my leg, compressing the veins and taking pictures. They commented on how easy I was to scan because I am slim. There was nothing there, so basically, this is a fairly common complication, and it might go down in a few days. If not, I’m back on Thursday.

The 4th of April.

Well I took a Zopiclone, then had a lot of coffee this morning so I was perfectly perky. We made some vegan sweet potato brownies, and I read the weekend Guardian. Much of the magazine was politicians on blind dates and since the debate, I really couldn’t be bothered with more of that.

This afternoon, Romesh came over and he brought Matt Richardson with him! Always happy to host multiple comedians. Basically we just hung out in my living room, drinking tea, eating brownies and trading stories of gigs, people we knew, the deficit. I do enjoy having the comedians round – I feel like they’re already my friends from the radiop/tv/twitter, so I just talk to them like that. It’s fun.

They left about half four months so I’ve watched Rise of the Guardians and finished the aardvark head. Christine feels to urge to make trifle which I have tried to stop but it seems trifle is happening and I’ll be unhappy about it. I really hate trifle.

Easter tomorrow! All of the chocolate!



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