Archives For Photopheresis

The 28th of July.

I’ve had a very productive day, without even leaving the house. Not so much the morning – just blogging. But after lunch, Mommy and I decided to make Konditor & Cook’s Curly Wurly cake. My role was to warm milk, sugar and chocolate together before pouring it into the rest of the mixture. They had to bake and cool, so Mommy went to see Grandma, and I watched the first episode of Agent Carter and one of the episodes of Hannibal that’s on the box while I started making the body of Jessie the Raccoon.

When she came back, we made the frosting and I filled the middle, then coated the whole cake with a thin layer of frosting before putting it in the fridge for an hour. Christine rang, then we watched Mock the Week from before we went away, then it was time to finish. I piled on the rest of the icing and decorated it with some chocolate swirls. I’m quite pleased with its appearance, just have to taste it later! I’ve finished Jessie’s body, now working on the head, and that’s going to be tricky. 

The 29th of July.

Jessie’s face was a disaster so I’m trying again. If this goes wrong I might cry. 

Had to get up at 7am for haematology clinic. I was fully ready to yell at Ram but when it came to it, I couldn’t. I was in by half past ten, and he read me Andrew’s emails, and basically, because it isn’t getting worse and it’s not medically necessary, he won’t do another venoplasty because he doesn’t want to screw up my veins more. I only have two ECP sessions left, at the end of this month and three months after that, so essentially, there’s not a huge amount of point in having those so we’re going to stop and the line is coming out. I did cry. I’m just sick of being angry about it all the time. 

This afternoon, we took some Curly Wurly cake over the road and had dramas on the house, then I was at the chiro with just a bit of neck aggravation,back in three weeks. We’ve watched an episode of Cordon, and I’m now trying really hard not to fuck up Jessie’s had number two. 

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 21st of May.

Well my day was better than I anticipated. I had to get up at quarter past six to be at the QE for my of function test at quarter past eight, so that was not particularly enjoyable, but after that, it got better. I had coffee and did my tests, the results of which were, pleasingly, better than last time. I did hope that would be the case, considering back in.February, I was still very much getting over the flu. Drl Thompson asked what I do in the gym, so I showed him the last I keep in the app, and he was surprised. I believe he described it as “proper”. 

I was all done by half past nine, but I wasn’t due up on 621 for ECP until 11:30, so I gave them a ring and they had a free machine so I was able to be done early! So we left around lunchtime and went to the Bullring, as Digbeth Dining Club are doing a collaboration with Selfridges, so I had a salame, provolone and preserved artichoke calzoni, then I got a new spiral crochet notebook and a salted caramel cookie.

This afternoon, I’ve been finishing off all the parts of mini Frankie, so I’ll hopefully put her together tonight.

The 22nd of May.

I am pretty sure I’m coming down with something – possibly what Mommy’s had, but I think it’s more a variation on that. I’m not sleeping well, feeling generally a bit pants and overly-sensitive, in a weirdly physical sense. I had ECP again this morning, and I was glad we got there early, as the machine hadn’t even been primed yet so God knows what time I might have got started. That all ticked along quite nicely, and Igor came to see me about my blood pressure. I’ve got a new drug to try, so we’ll see if/how much my feet swell up. He had Julie take some blood cultures, so they’ll show us if I need antibiotics. I probably won’t, I’m just hoping it’s a virus that goes away without getting much worse.

We went back to Selfridges after it was over as Andy’s Low ‘n’ Slow was there, and I wanted some pulled pork. I also got a couple of boxes to post crocheted stuff in, and we got an anniversary card for Peter and Sophie. Since getting home, I’ve changed into poorly-person clothes and am basically feeling pretty pathetic.

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 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.

The 12th of February. 

Ugh. Up at half six to leave the house at eight. I had lung function tests at nine which is never my favourite. It was a nice lady though who knows which tests I hate so we got those out of the way. We had to do one twice as the kit was broken and saying my lungs were three times the size they are, which I think we would have noticed. I also discovered that they have a new machine that just scans you and knows what your lungs are doing. I would prefer that. Then I saw Dr. Thompson and he said my results were a bit worse but that is not surprising considering the flu etc. 

Then at 11:30 we went up to level 6 for photopheresis. Except I didn’t get started until half past one. My blue lumen decided it felt left out and didn’t want to bleed, and the red was being very sluggish and they just weren’t working with the machine. They put urokinase in both and left them for an hour, then they bled! Hurrah! So I finally got going and we left at about half past three. 

Since we got home, I’ve had my first Valentine’s card from Pam and Alan – Alan is my paternal Grandma’s cousin, bless them, and painted my nails pink in an attempt to be festive. 

The 13th of February. 

Last hospital day! For now, anyway. Until the venoplasty but I still don’t know when that’ll be and it’s making me antsy. I had to get up at six today to be at Radio WM for ten to eight. So early – I am so sleepy now. I got greeted by Alex, my old pal from back in the day at drama school who’s now in radio (obviously) and then we sat and waited in the production area until it was my turn to go in to the studio. I wasn’t on for long, but I was able to tell my story and get my point about donation across, which I think I did well. Then we came home. 

I had a coffee and finished the final parts of Grandma’s bear, then Daddy and I went to the QE for photopheresis again. My line bled beautifully today, but then I got a time of 61 minutes! We still escaped earlier than yesterday – two o’clock! I gave Nic Cedric the Crippled Cuttlefish (because he’s only got seven legs) because she’s leaving and we’ll miss her. He’s going to live in her car, Gertie. 

Since getting home, I’ve finished Grandma’s bear and started on a bunny for a lady on twitter. 

The 15th of January. 

Day two of photopheresis, so through much quicker than yesterday. No arsing around with porters and oxygen today. I’m still on 1.5 litres which I’m pleased with, but I’m still having difficulty if I take the specs off and try to do anything more than just sit there. 

Since we got home m I’ve been working on my new crochet project which will be a cat. I’ve had to rework the pattern for the feet, but it seems to have worked. 

Becky came over briefly to collect her keys that James had dropped off this morning, but didn’t stay as she actually had work to do. 

I’m knackered. ECP is exhausting when you’re not at your best. 

The 16th of January. 

A very unexciting day. I woke up at quarter to ten, and have been working on my crocheted cat all day. He has a head, body, arms and legs, but no ears or face yet. He’s nearly done!

The most interesting thing to happen today was that I came down to 1 litre of oxygen, so I’m hopeful that I might be off it by my birthday!

I feel a bit strange about this birthday. I didn’t think I’d get here. I don’t know what I want for it, or what I want to do. I feel a little bit lost, purposeless. While I’m so helpless, attached to oxygen and unable to exercise at all, I just feel like an invalid. I hate being so incapable of doing anything on my our. I am so desperate for this flu to be gone and to be off steroids. That’s nearly the case – I’m on 1mg now and will be stopping very soon. I’m scared that everything I’ve hoped for won’t happen, that I’ll be stuck like this .