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The 6th of February.

My arm really fucking hurts today. I don’t know what it is, and I doubt I’ll actually find out much tomorrow because a radiographer will need to interpret the scans.

I had a horrible dream about a child being run over multiple times, so it took me ages to get back to sleep. This morning, I wrote up a blog post, then I returned to crocheting the scarf, because it doesn’t seem to make my arm any better if I do nothing.

After lunch, I listened to The News Quiz, then watched the new episode of Black Lightning while I did my exercises again. We’ll see if it’s the cause of my extra back pain when I get up tomorrow.

Really hope my new glasses come in tomorrow, then we can pick them up after my scans.

The 7th of February.

Well, today has been really rather good. This morning, I had my scans. Getting there was not fun – the traffic was very bad, and the car park was so rammed, it was hard to even find a place to pull over so Daddy could drop me off (Mommy had had to take Grandma to Good Hope for an echo). I arrived about five minutes before we were meant to start, but it was okay. Had to go through all the usual questions about metal in my body, then one of the techs tried to find a vein so they were ready for the injection when Andrew came. However, my veins didn’t want to cooperate, so we gave up and did the MRI on my cervical spine (to see if there’s a reason for the numbness in my right forearm). I got an itchy nose mid-scan, but I was able to ignore it. When I came out, Andrew was there, and he went hunting for veins. Still not very forthcoming. It got to a point where he was considering a different kind of scan, but it was a cardiac one and I didn’t have an appointment there. On the fourth go, in the underside of my wrist, he got a cannula, and we were able to do the MRV. He’s going to look at the pictures and see me in clinic. Pray for answers!

I rang Piccadilly to see if my glasses were ready but they won’t be in until tomorrow. On that way home, we got a pretzel from M&S, now a rarity, and this afternoon, I have been crocheting the scarf again, thankfully without pain. My back has also not hurt any extra today, so in all, a win!



The 20th of December. 

I am home! Ohh so happy to be back where I belong. 

Last night I wore earplugs which helped me sleep a little longer this morning, although any remaining tiredness was very quickly shaken off when the woman next to me shat the bed. The stench. 

Different consultant but same junior doctor today, and I said I was pretty much losing the will to live waiting for this scan. I also explained that regardless of the outcome, I would be discharging myself today because I could not spend a fourth Christmas in hospital (and I did a small cry). The consultant was very sympathetic and instructed the junior to hassle ultrasound about getting me scanned asap, and having all my drugs and paperwork ready to go. 

A haematologist came to see me with the thought that I might have a fungal infection, and he wanted me to have another kind of scan, but the consultant above him felt that was not necessary, thank god. 

So then all we had to do was wait for ultrasound. A woman turned up shortly after two, and proceeded to scan me right there in my bed! Once again it was commented upon that I am lovely to scan, and having covered my right side in gel, she found no evidence of a clot. Obviously we informed the doctor of this immediately and by three we were out of the door. Just a tiny visit to Pandora on the way home to get the charm for yesterday’s anniversary, and now I am at home in our living room. I have petted the kitties and tonight I am out at The Glee for Joe’s Crisis at Christmas gig. 

I’m just SO HAPPY. 

The 21st of December. 

Sleeping in one’s own bed does not get old, let me tell you. 

I had lots of fun last night – Joe’s friend Ben who I met the other day was sat in front of me, with Jess Phillips (MP), and they were both amazed by my mug of sausages. I pointed out that they too could order one, they are always available. 

I went into the dressing room at the interval and at the end, and got to spread the Anthony Nolan word some more. We also had some chats about which was the best gay Christmas pun, and wondered whether Sara would make it. They were all lovely and really funny; will definitely make an effort to see them again. (On the bill we had Joe and Sara, Guz Khan, Fin Taylor, Andrew McBurney and Mo Amer.)

Today I finally finished my wrapping, watched Elf and decorated our tree. Daddy came home with Christine while I was mid-tree, so she helped me finish. My right arm is still huge and I’m coughing but I’m trying not to care. I’m okay and I’m home which is all that matters. 

Today is eight years since my liver transplant. Back then, nobody thought I’d even see Christmas, yet now I’ve had eight more. At what should be the best time of the year, my donor’s family went through the hardest thing I think there is: the loss of a child. But they were selfless enough to know that they could stop another family feeling that pain, and they gave us that. A Christmas miracle. 


The 18th of December. 

Guess who’s back in hospital? Lucky me. Having added up all the symptoms, I decided that actually, going to A&E this morning was going to be necessary. If I do have a pulmonary embolism, or need inflating, we needed to get the ball rolling asap. 

So after breakfast and coffee, Daddy brought Mommy and I down to the QE and here I will stay tonight. We arrived at 10.56, got triaged and had my obs done. My high heart rate concerned people despite me explaining it was normal for me. I spent most of my five hours sitting facing a corner in a sub-wait so I was exposed to as few germs from coughing people as possible. I had a minuscule amount of blood taken, enough for a D-dimer (a test to indicate a thrombosis) and saw a doctor who decided to admit me for the tests that I need. They’ll want to do a CT scan which I can’t have because I’m allergic to the dye, so if a PE seems likely, I’ll have the one I had before with the radioactive gas. 

I finished my book (Cats Cradle by Kurt Vonnegut), and eventually got a bed on CDU at half four. I filled in a form, was brought some dinner of chicken in a creamy sauce with green beans and mash which was actually edible, then we sat and waited for Daddy to come with my overnight bag. 

Once he arrived, a doctor followed shortly after. He’s from the liver team so has heard of me, and we went through all my symptoms and history again. He was mad that I hadn’t had a chest x-ray yet as he could hear prominent crackles, but it’s done now. I’m high risk because I’ve had a PE before, and my veins have been inflated before, and this doctor is sensible so I’m confident things will happen tomorrow. Hopefully it’s simple. PE and clexane please. 

The 19th of December. 

Happy 9th Marrowversary to me! Nine years ago today I was sitting in a hospital bed, having Christine’s stem cells transfused into my bloodstream; now I am sitting in a hospital bed waiting for another scan.

The doctor (Matt) came back last night to say that there was a shadow on my lung, so he wanted an ultrasound today to see if there was any fluid there. A porter came for me at half nine, but then we had to wait for a transfer nurse. After half an hour of him angrily pacing, a woman came up from ultrasound to help. For some reason, I had to go down on my bed, so two people were required. Anyway, a man scanned my right hand side and found no fluid so that’s good. I returned to CDU, where I was seen by the doctors who have now decided that because my arm is still swollen, they want a scan of that, so I’ve been waiting for that all day. 

Mommy came in with some lunch for me, and we sat around some more. Dr. Thompson decided to drop in to say hello and take the piss a bit because he is awful (but we love him). He feels that if there’s no clot in my arm, there’s no need to go hunting for one elsewhere, so tomorrow hopefully I’ll just have my arm scanned and then go home on clexane and co-amoxiclav. Please!

Gareth had been in to visit the liver team so popped down to say hello and ended up staying for nearly two hours! Still, we had nice chats about Keith and the liver team and Christmas. I think it served as a nice distraction for us both. 

I also had a visit from April who works here and follows me on instagram so I got to put a face to a name!

Loads of new people tonight. Go away.

The 20th of August. 

It has been a really good day. 

I got up at a normal time, and the pain I had while making my breakfast was mitigated by the fact that I knew I was having my MRI this afternoon and soon we will know things. I had an email from Sheila to say that the lady I was going to ring had phoned her this morning to say she definitely wants the cat she saw last night, so she wasn’t going to come and look at Nova. Fine with me!

Went out at half eleven to meet Rachel for lunch at Yorks at twelve. It was the one on Stephenson Street which I hadn’t been to until today, so it was nice to see it in person. She was already there when I arrived, and brought me some water which was secretly infused with cucumber and the taste was very confusing. We had coffee, then I ordered eggs benedict for my lunch which was really good, and I only stopped when I choked on a tiny piece of egg which tried to go down the wrong hole. It was my own fault; I tried to talk before I swallowed. I gave her the flowerpot kitty, which might upset their budgies but hopefully they don’t attack it. We just had a really nice catch up, talked about her PhD, my kittens, fun dogs, and watching people outside in the ever-changing weather. 

Mommy came to pick me up about twenty past three to take me for my scan, asking everything moved very quickly! No time to even get my book out, let alone read any. I got changed into a gown and went into the room having answered all the questions, I lay down, and they put a support under my knees and gave me some earplugs. They put the alarm button in my hands incase I had a panic (I never do), and they put some blocks either side of my head and a cage (it’s not a cage but I can’t think of the right word) around my chest to keep me still, then put a blanket over me because I was a bit cold. 

Then I just lay there, eyes closed and cursed silently when my leg would spasm. Listening to all the different noises, imagining all the waves moving through my body. I was in there much longer than I expected, and I was really hot when it was over. So glad to get that blanket off. I was pulled out by two new people who’d taken over, and I put in a plea for the report to be done asap. We can but hope!

The 21st of August. 

Normal service has resumed; back to doing very little. I was able to have almost a normal amount of orange juice this morning, so that consistent treatment of the ulcer on my tongue must be working. Right after we’ve got a load of Difflam. Still, it lasts a long time so I doubt it’ll be wasted. 

Sunday Brunch all morning, which today involved retriever puppies and Miles Jupp whose cackle I just adore. Grandma arrived towards the end having been picked up from church. Daddy fixed my wheelchair because it has been misbehaving a little, but suddenly came over all weird and spent a lot of the rest of the day in bed. It happened on Friday evening too and we can’t really work out a trigger. It’s very mysterious. 

We had pheasant for lunch, then I have spent the majority of my afternoon crocheting the jumper. Twenty two rows of fifty stitches takes a good few hours, and now I’ve got to the end of the end of what I’ve deemed the first section. When I’d got to the end of row 32, I started Slade House by David Mitchell, and have got through the first two chapters. I don’t think it’ll take me long to finish. 

Just had Taid in the phone and his helper woman has just quit without warning and actually without word at all – he’s had to ring her son who has spoken to her and she’s just ignoring the situation completely. She has, in effect, ghosted on him and I’m so, so appalled. I’d like to call her up and ask her who the hell she thinks she is. 

The 9th of June. 

I was wrong about thunderstorms meaning it would cool down. Still kind of disgustingly warm most of the day, but right now it’s bearable. The kittens are too sleepy to do anything but loll around, yawning. 

This morning, I wrote up a blog post and wrapped Daddy’s birthday presents. I have been sensible this year and got him box-shaped gifts which make for much easier wrapping. 

I was at Black Sheep this afternoon, getting my hair re-purpled. Started at 1.45, finished at 4.30. Still, there are much worse ways to spend an afternoon – chatting with lovely people, reading Animal by Sara Pascoe and getting my head massaged. That part always makes me want to just close my eyes and have a nap. 

Once I was successfully mauve, we were done as I didn’t need a chop just yet. Daddy and I had been considering a cinema trip but decided against it as today was going to be the only good day for gardening. This turned out to be the right move because we would’ve booked for the 3.40 screening which we would not have made. 

Becky and James have just been round, saying hi to the fat kitties and collecting the tv that we’ve bequeathed to them. We mainly discussed that joys of kitten poo, especially in this heat. Splendid.

The 10th of June. 

The weather is as bleak as my mood. Dark, grey and rainy. The scan at the Women’s was an ordeal. Again. 

I had a horrible night, dreaming of a fictional serial killer. Lots of podcasts were required to distract my brain so I could go back to sleep. This morning I made the last orang-utan leg, which was one small victory – I no longer have to do any more fur stitch!

The ultrasound appointment was twenty past three, and I was supposed to finish drinking a litre of fluid an hour before that, which I dutifully did. We arrived extra early because it was visiting time, but parking wasn’t a problem. This turned out to be fortuitous because the lid hadn’t been on my water bottle properly and it became apparent that I had a very damp leg. This meant we spent a good ten minutes emptying my bag and spreading its contents all over the back of the car. 

I didn’t have to wait long to be seen, and the first part of the scan, with the full bladder, was done pretty easily and quickly. Then I was allowed to pee, and had to return for a transvaginal scan which I had not been warned about. I had to strip from the waist down and lie back with my knees up while the technician tried to insert the wand. Obviously, it was agonising, and she persisted for what felt like forever without success. A consultant had to be fetched, who deemed the first pictures “too blurry”, so I had to refill my bladder and be scanned again. 1800mls of freezing cold water later, I was feeling incredibly full and uncomfortable. Better pictures were obtained, once she located my elusive right ovary, and we left with me resenting my stupid body for not being able to accommodate medical implements. It’s like my body’s saying “Even if you could have children, you couldn’t get them out this way!”

The 12th of July.

For obvious reasons, it’s been a recovery day. I got up just after nine and watched Sunday Brunch, finished yesterday’s paper and wrote about the hen, which took much longer than usual as there was so much to say. I also had a look through the photos that the woman took at Pizza Express, need to delete a few as they’re not all worth keeping. 

Grandma came after church for lunch, then Daddy took Christine to the station, and we have been watching the Wimbledon final since then – I wanted Federer to win, but oh well.

That is all! Exceedingly quiet. 

The 13th of July.

Not the day I had planned! I had a free morning, writing up my blog from the weekend and a planned gym visit in the afternoon. Grandma had a nursing review at half past one, so Mommy was going to take me after that. However, I had a phone call from the QE from a woman in x-ray who was asking if I could come in for an ultrasound at half past one. Of course. I needed to have it done, so I got changed it of my gym clothes and got an Uber car to take me to hospital. It’s handy having one on my road who happened to be free!

I had to self-propel from the car to reception (which was far enough, a plenty decent workout for my arms) – I couldn’t take the new chair as I’m not strong enough to put it up myself yet. A volunteer pushed me to imaging outpatients, and after a few phone calls to find out where I needed to be, I got taken to the right place. I wasn’t waiting long before I was taken in, and as I expected, there’s no clot. She’ll write the report and we’ll see what happens. Then I was taken back to reception where I was picked up by Mommy about five minutes later. 

Now we’ve watched two episodes of Cordon which is a) stressful, b) gross and c) addictive. And we’ve got two more to go!

The 23rd of January. 

I was right – all I needed was a good sleep. I had a Zopiclone and by this morning, I felt better. Didn’t do a vast amount this morning – Kate the nurse arrived soon after I got downstairs, so she flushed my line and I was finally able to have breakfast at about eleven. I watched This Morning, then after lunch, Mommy and I went to Waitrose to pick up wool I ordered from John Lewis to finish the bunny I’m doing, but it’s the wrong colour!

We then went to Hobbycraft as it’s not that far away, so Mommy could get this tape for the duvet cover, and I got some more stuffing. Had I known the John Lewis wool was the wrong colour, I would’ve looked for more there, but I didn’t open the bag until we got home. I’ve had a go at ordering some more in a different shade from Wool Warehouse so fingers crossed! I would like to finish him. 

Since our return, I have made the body of an elephant during Mel and Sue and Pointless. More birthday cake tonight and Christine coming home!

The 24th of January. 

Today sucked rather exponentially. I woke up coughing, my face was much more dramatically swollen than yesterday, my arms are boggy and I had what I call a “pressure headache”. This made me miserable all morning, so Mommy rang the hospital who wanted me to go in to be assessed. 

So I didn’t go to see Ex-Machina with Daddy and Christine, instead I had to go and hang around on 622 which involved waiting a lot for few things to happen. A nurse filled in part of a form, then another filled in the rest. She was going to take some blood but couldn’t get the blue clave off the end, so eventually the sister, Claire, had to come and try her super fingers to remove it. She was successful in the end, after she caught it unawares. 

After a long time, a doctor came to see me and he determined that I needed a scan, but because it was the weekend so nobody was there to do it, so I had an ultrasound instead. I went down for that just after six, and a very nice doctor looked at veins and decided that they’re not blocked, but the narrowing is probably back. 

I got back to the ward about seven, then we sat around until nine, waiting for the doctor to say “yes you can go home”. The man opposite me was not so lucky and had to stay in overnight for more platelets. Hadn’t brought a bag. Rookie. He