The 2nd & 3rd; I think I need blood.

The 2nd of March.

I think I need blood. It was mentioned at hospital that my haemoglobin was a bit low, and I think I’ll need a couple of bags before photopheresis next week. It’s very boring and annoying, being so tired all the time. I have no appetite whatsoever – some things even taste different. Breakfast makes me feel sick. I just want to be able to move around my house again – this morning it took me nearly an hour and a half to get downstairs this morning.

I had an appointment at the chiropractor at one which was good because my lower back has still been unhappy and very stiff. After I’d been crunched and massaged sufficiently, we had a brief trip into Sutton so Mommy could look at dress patterns and I could get a box to send Benedict the Chimpanzee and the pink/purple bear to Jamie and Georgia in.

Coming home, my lunch was some rice with ketchup, then I uploaded a blog post. Since then, I’ve made the body of another monkey for Oliver.

I’m glad today is my last day of antibiotics. Hopefully my tummy will then sort itself out. I want to enjoy food again!

The 3rd of March.

There is very little to say about today, if anything at all. I woke up feeling absolutely rotten, like I was going to throw up. Mommy brought me up some water and my tablets, and I spent the morning in bed, drinking the water and trying to summon up the energy to get dressed. 

I did eventually do so, at about half past twelve, and I cleaned my face and brushed my teeth. Since coming downstairs, I have made a monkey head and leg, and we watched Critical from last week. The window cleaner also paid us a visit – is it ever okay to ask them to go away? I just hide or if can’t, avoid all eye contact. 

I’ve just had a slice of toast so far, but I think I will be having scrambled egg on toast for tea. I’m expecting to feel more normal tomorrow. 

 


The 28th & 1st; Every day my breathing doesn’t improve, I worry a bit more.

The 28th of February. 

Just to add insult to injury, my period has returned. I only just stopped taking Provera! It is not supposed to work like this! Going to have to see Dr. Robinson and get her to give me the coil, provided I can get the haem team to decide what they’re going to do about clexane. 

I’ve felt really kind of pathetic all day – cold, no appetite, no interest in being productive. I finally read the paper this afternoon after Mommy washed my hair. I at least look vaguely human today. 

My hands are almost back to normal. Still got squidgy arms, but I am getting there. I’m just grateful it’s worked! See how long it lasts. 

This evening Christine is making a dinner involving pheasant breasts because I am too rubbish to venture out to a restauran. Every day my breathing doesn’t improve, I worry a bit more. 

The 1st of March.

I am nearly back to my proper size I think! The size 16 pyjama top I’ve been sporting for the past few nights is now loose which is nice – I enjoy having all my limbs be in proportion.

The fluclox is certainly affecting my digestive system – my tummy is just very unenthusiastic about any food at all. Grandma came for Sunday lunch and I was really not thrilled at the prospect of roast beef at one o’clock. Only one more day, thankfully. 

I have just felt generally grotty, so watched the rugby and crocheted. I’ve been productive, but quiet. 

Last night I started having a panic about what I’d do if Mommy ever gets ill and can’t look after me. I hope I never have to deal with the reality because it would just be the end of everything. It’s thoughts like this that make me think it would be better if I died sooner rather than later. Which is very selfish on my part. 


The 26th & 27th; I’m sick of being afraid all the time.

The 26th of February. 

I have such fat hands!it is obviously going to take several days of furosemide to get rid of the fluid. It is bizarre to have fat palms. There are no dents in my hands unless you press into them. 

I woke up with a very dry, sore throat, and trying to talk, I sounded like Chewbacca. But I was in my own bed which is all that is important. I gave Mommy her birthday present and card. I hadn’t been able to wrap the earrings – my hands don’t really work. Writing is making them ache. 

So I’ve spent my day going back and forth from the bathroom as that’s what diuretics do. I haven’t been able to crochet. I will just be quite useless until this fluid is gone. It hurts more than you would think. 

The 27th of February. 

It just doesn’t stop, does it? The fluid is slowly going, after having 60mg of furosemide, but now it looks like the GvHD in my skin is flaring up on my torso. It might be a side effect of the fluclox but I don’t know. It would just be fucking typical that having been off steroids for a month, the fluid finally draining from my face, I might have to go back on them and everything be ruined. 

Another day of not doing much at all, because I feel like a useless heap. My hands can do most things now, so I started doing some crocheting late afternoon. I’ve made up Benedict the Chimpanzee, and I’ve done the body of Georgia’s bear. Christine has come home this weekend and she brought us brownies! I had half of the triple chocolate one because the others seemed too much for me to consume. 

I’m sick of being afraid all the time. I haven’t had the slightest chance of normality since July, when I had to go back on steroids and lost all my muscle mass. I just want a break. 


The 24th & 25th; It was awful.

The 24th of February. 

Okay so I’m still here. Slight change of plan. This morning I woke up insanely, painfully swollen. I could feel my face in a way that usually, one cannot. Igor did a bit of a double take when he saw me as I don’t think he could quite believe the amount I’d expanded since last night. Anyway. My infection markers are now negligible, so he said we could either take the line out today, or pin down Andrew and see if he could inflate my veins in the next 24 hours. Something magic happened, because he’s going to squeeze me into his list tomorrow! What time, I don’t know, I am just grateful to be being fixed!

My neighbour snores extremely loudly. Earlier, she went down for an endoscopy, but upon her return, she phoned multiple people to tell them she’d had keyhole surgery, and had a bag outside which some bile was draining into. Sounds like gallstones to me. Anyway, she fell asleep and her snoring was becoming incredibly irritating. Thankfully, she got so loud that she woke herself up. It was quite phenomenal. 

Had to disagree with nurse Rowel tonight as he tried to give me 80 of clexane when I’d distinctly heard Igor say to do 40. Sorry but pretty sure nobody would cut me if I was going to just bleed everywhere. 

The 25th of February. 

Waiting is the worst. I had double Zopiclone last night so I’d definitely sleep, which was pleasant, until I was woken by people offering me breakfast even though I was nil by mouth. I declined. 

Igor came and said it would be between ten and three, so Mommy and I just twiddled our thumbs, waiting for angio to call. I am so glad I’ve been able to hijack the wifi for TV or it would have been even more dull. We had just started watching Graham Norton on iPlayer just after two when the nurse came to get me!

She and a porter took me down on my bed, and we did all the checklist bits. There was a man snoring in recovery so loudly that the ward manager had to come and find out what the noise was! Lovely Bruce who always looks after me was there and he came to make sure I was okay. Everything was fine until the actual procedure was happening. It wasn’t Andrew, it was the man who did half of the venogram. A nurse was doing the sedation – I had 4 of midazolam and 50 of fentanyl but it didn’t seem to work at all – I felt all three inflations. It was awful and I got really tearful. Andrew came to see me in recovery and he felt really bad and said next time I must have more because I seem to be building up a tolerance. Bruce came to talk to me to take my mind off things, then Rowel came and I got some taken back. 

I cried at Mommy, then I was supposed to lie flat for four hours, but I decided to do it for two, then I sat up for an hour. I was allowed to leave at seven, we had fish fingers for tea, and now I just want to start deflating. 


The 22nd & 23rd; Back in the QE. Inevitably.

The 22nd of February. 

My body feels like a wreck. I barely slept last night, with things hurting that I didn’t know were affected. My brain is on fire because I am hurtling through multiple scenarios of what the next six months might be. I daren’t think much further ahead. 

I watched Sunday Brunch and other things while I worked on Benedict. I’ve got very little of him left to do no because I’ve worked so solidly. 

I have nothing to say. I am so exhausted and so desperate for it to be tomorrow, I just need them to do something. I will go in there myself and force them to see me and the mess I’ve become if that’s what is necessary. 

The 23rd of February. 

Back in the QE. Inevitably. 

I was woken by Nicola ringing to see how I was, so I told her how my life was essentially ruined and she promised to ring back once she had seen Ram. 

We waited all morning, and having heard nothing by lunchtime, we decided to ring back to find out what was going on. Ram had arrived and gone straight to a meeting so was unavailable, so Nicola was waiting for Sandeep to finish on the phone so she could talk to her. By two, I was getting really stressed so I decided we should just go to clinic so someone would physically see the distress I was in. 

However, on the way there, I had a phone call from Igor, King of Specialist Regs. He’d heard what was going on and decided to admit me and he’d take the line out in the morning. So we turned the car around, stopped at M&S to pick me up some dinner and went home to pack a bag. 

Now here I am in a bay on 625. I’m having IV antibiotics tonight and tomorrow morning, then Igor will take the line out after ward round. I’ve managed to latch onto the TCT wifi so I will be watching Broadchurch no matter what!

 

 


The 20th & 21st; This is becoming intolerable.

The 20th of February. 

Ah a bit of baby-squidging can fix me every time. I woke up and did not feel brilliant because I’m extraordinarily full of fluid today so I’ve got a ridiculous amount of chins and my arms are getting painful. I didn’t really feel like going out this afternoon but I thought seeing the Coe-Winningtons would make me feel better and I was right. 
During the day I have finished and made update Winston so he will be ready to go to Heidi’s! Now I begin Jamie and Georgia’s monkey and bear. 
So yes, mid-afternoon Mommy took me to meet Elle, Ben and Luna. She is getting so big and fat which is my favourite kind of baby. Speaking of babies, also in Starbucks was Greg Rutherford with his baby! His baby was quite angry though. 
We spoke to the QE regarding my line. They need to talk more, we have to monitor my temperature, if I feel at all unwell we have to ring 625, and on Monday morning we have to ring back. I bloody hope they form a plan because this is becoming intolerable. 
The 21st of February. 
I had a double Zopiclone night. I was fine, then when going to brush my teeth, I was coughing so much, I got really out of breath and upset about my arms, and how I’ve been wanging on at my doctors for weeks about this, and it’s taken so long that now the line is infected and it’s even more complicated to fix. Essentially a lot of “it’s not fair” self-pity that got me rather worked up and incapable of sleep. 
I got up at ten, and after watching Saturday Kitchen, Mommy washed my hair and I’d just finished drying it when Aunty Hilary and Uncle Jeremy arrived. Yesterday they found themselves with a suddenly free day and asked if they could come and visit. We had nothing on, so up they came! We had a nice catch-up, Mommy roasted a chicken and we watch some athletics. Plus the saga of Taid’s phone (it’s as exciting as it sounds), bless him. He makes his life so much more complicated than it need be. 
They were on their way at about half four, so since then, we have taken down all my cards (83 at final count) and I’ve started on Benedict the Chimpanzee for Jamie. 
 

The 18th & 19th; I will have to deal with the possibility that I might not be able to go anywhere independently ever again.

The 18th of February. 

Right. Well. Hm. I was having a really good dream when my alarm woke me up this morning, but I had to get up because the PIP assessor was coming at 9. She was not a dragon as I had feared, but was in fact very nice and it’s all fine. After reading my file, she wasn’t sure why she had to see me but she came, I answered all the questions and she was gone by ten to ten!

My line site has just been hurting more and more, and the veins around it are much more prominent, so I decided we needed to go to clinic and get someone to look at it. I was right, because Ram’s pretty sure it’s infected and needs to come out. But if we do that, the vein might collapse. Sigh. Ram tried to ring Andrew but had to leave a message, but he did say it was urgent so I am keeping my fingers crossed that that makes a difference. 

We didn’t get home until two, so there was just time for lunch and some work on Winston the Aardvark before I had to go to the dentist. He and the hygienist were happy because I’m an excellent patient and I brush and floss twice a day. 

The 19th of February. 

So all I have done today is work on Winston, with an overhanging hope that someone might ring me with a solution to the problem with my line, but to no avail. 

Mommy woke me up at ten – my body is just constantly exhausted right now. It’s probably partly to do with the fact that I have an infection and it’s taking its toll. Since eleven, I’ve finished Winston’s head and three legs, and I’ll probably do the last leg tonight. Then ears, tail, face and sewing together tomorrow. 

There was a brief break when Becky came over with some fabric samples that we’ve decided will work for wedding cravats. 

I have very little to report because I am just waiting for someone to operate on me. I’m managing under the theory that this is hindering my breathing, but if I have the procedure and everything is still this laboured, I will have to deal with the possibility that I might not be able to go anywhere independently ever again. 


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