Archives For igor

The 2nd of June.

Just seven and a half hours in hospital today, then an hour and a half drive home. Despite having two units of blood, I’m pretty pooped. I was awake at quarter to seven, ready to be at hospital for nine for my blood before ECP. No checked my haemoglobin and it had gone down again to 8.4, so it was a good thing she’d ordered two units for me. 

From then on, it was fairly dull. I read the paper, and took the time as a good one to listen to some new albums in their entirety – Wolf Alice, Kacey Musgraves and Amber Run. I’d just got on to Florence and the Machine when Igor came along to talk about my leg and recurrent anaemia. The leg – well, we are going to get Ram to talk to Dr. Lester, the thrombosis man, about getting me off clexane, and I just have to live with my leg being boggy until it gets worse and we can do something then. For the anaemia, it appears that I’m iron deficient, so I have more tablets to take! Joy. This is probably the last time we’ll see him because he leaves in a week! I will be very sad to lose him, he’s been so great. Lucky Glaswegians. 

Then just the 90 minute drive home, and here I am. Phew. 

The 3rd of June.

Heavy cloud. It came over me this morning when I realised quite how big the difference in the size of my legs is. It looks like I’ve had a cast on the left one and it’s withered away, when it’s in fact the correct size. This is all Ram’s fucking fault and he’s going to bloody fix it. I’m angry because the way it looks is the only good thing about my body and he’s fucked that up.

Photopheresis was an hour late in getting started too, so that annoyed me more, then the hot dog I had at Colmore Food Fest was fine but not exactly warm, and we encountered traffic on the way home that meant we were too late to pick up packages from the sorting office, so I’ll have to get those tomorrow morning. 

I’m just sitting here in festering rage because once again I look like a fucking freak and it’s someone’s fault and it’s not going to get fixed before we go away so I have to feel like shit about myself for weeks. 


The 17th of April.

Awake at half past five. Why? Stupid brain. I tossed and turned for a llittle bit, started listening to the Today programme, then got bored and watched an episode of Dexter. Mommy day my light was on so she came in to say hello, and I asked her to bring up my Tramadol so I could take it and give it a chance to start working before I started moving around.

I spent my morning frantically finishing Michaela’s black sheep, working right up until quarter to one when Daddy and I had to go to hospital for more bloods. Clinic was totally empty as it hadn’t started yet which was lovely, and Igor appeared promptly. All my cultures came back negative, but my CRP (infection marker) was 200 (it should be less than 5) so he wanted to make sure it was going in the right direction. We looked at my x-ray which showed no fractures, but the spaces between my vertebrae are smaller than they ought to be. If the pain doesn’t go away then I’ll need an MRI. Got some antihistamines from pharmacy as Tramadol makes me itchy, then Daddy took me to Black Sheep!

I got to see baby Blossom (so small!), and it was so nice to see Michaela back! I told her and James that I wanted short and vibrant, so now I’m a pink and blue pixie and I love it.

The 18th of April.

Three episodes of Dexter this morning. Plus several podcasts before I actually fell asleep. I’m so mad at my body because I’m not even on steroids – I ought to be able to sleep! I had my Tramadol upstairs already so I had it about forty minutes before I actually got up. After breakfast, I went through the weekend Guardian which took up until lunchtime.

This afternoon, I have finished Anna’s elephant and taken a frankly absurd amount of selfies because I am obsessed with my new hair. I feel pretty great about the way I look right now. Super fly. Yesterday, Michaela couldn’t get over the change in my face, which Ram also noticed, and I’m just like “Yes! This is what I’m supposed to look like! Do you now understand why I get upset about looking different “?

My right foot is swelling again a little so I’m taking furosemide but it’s still quite uncomfortable inside my slipper, so I might have to lie on my back with my legs in the air for a while. I’d also really like to go back to the gym but the pain hasn’t improved enough yet. And I have ulcers in my mouth that are not cooperating with the treatment I am doing, so tongue injections are a possibility this week.

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 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 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!


The 30th of March.

Busy day number one! I had a text from Asha at That’s Life asking to postpone our interview until Thursday, which was fine with me as it meant I could go and help Becky assemble wedding invitations. I got over there just before eleven and spent nearly two hours putting double sided tape on edges and sticking hearts and sparkly bits on. That sounds awfully tacky but they are in fact lovely.

I came home for lunch to find Mommy with frozen peas on her face, and it transpired that she’d slipped over in the Tesco car park and landed on her side/face. She doesn’t look too bad, just a very bruised cheek. I have tried to give her hugs but she is a bit battered so I can’t squeeze too tightly.

This afternoon was Miss Jackson’s funeral. It was like an incredibly bizarre reunion – so many old girls and teachers. It was really nice to reminisce about the old days, falling immediately into old rhythms, despite the morbidity of the circumstances. At the wake, I caught up some teachers, including Miss Insch which was good. I still credit her with my decision to go for the second stem cell transplant. Sometimes I miss school – it seems so easy now. I am grateful we didn’t have Twitter then. Had that been the case, I’m not sure I would have done so well at GCSE’s. We didn’t stay too long as Mommy’s face was hurting and she didn’t feel great.

Tonight I will get at least one blog post up as I’m behind, and I’ll look forward to finally getting my line out tomorrow!      

The 31st of March.

This might be pretty short as I’m trying to squeeze it in before we have to go out again. I’ll explain.

This morning, I just got dressed and started on Alice’s aardvark, then this afternoon, I was at the QE to have my line taken out. We arrived at two, as that’s when my appointment was, but Igor for delayed for some reason, so we didn’t get started until nearly three. It took about an hour, as the line is really thick so it’s hard to cut through, and it was really deeply embedded in the scar tissue so he really had to tug a lot to free it. Igor and Marcia were very complimentary about my stoicism while he put the local anaesthetic in. I am a brave girl, apparently. They must just get lots of wusses because the four or five injections it takes are really not that bad.

Once it was out, I had to hang about for an hour and a half just to observe me, and tonight I’m going back to 625 to hopefully have the new line in tomorrow. I say “hopefully” as Andrew was off today, but his list tomorrow isn’t cancelled, so I’ll be there if it happens, and if it is off then I’ll just go home! So right now we’re going to have dinner, pack a bag and be back on our way! I’m just keeping my fingers crossed that we’re on tomorrow.

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.