Archives For hospital

The 6th of March.

Back to the crochet habit. Might as well!

I woke up still tired, wanting to stay in bed but I forced myself up. Rosemary was coming round for lunch, so we had no trips out. I spent my morning writing up a blog post, then I started another sausage dog. This one is brown and cream, which is not a combination one sees often in them but it’s in the book and if it looks shit then I won’t give it to anyone. Rosemary did like the one I’ve already done, in black and brown, because he looks like her dog, Otto.

While she and Mommy had lunch, I watched the first episode of season five of Agents of S.H.I.E.L.D. Absolutely batshit insane – jumped forward seventy five years into the future in space. Obviously.

This afternoon, I made the head and ears of the dog, watched some Bones, and booked Mac into the vet for his secretary vaccinations tomorrow afternoon. Got a viewing on Thursday.

The 7th of March.

Tired. Up early for hospital. Not haematology, as was also previously in the diary for today, just ophthalmology. Mr. Kolli, not Dr. Barry. Today was about rogue eyelashes. The clinic was running very late – they were missing a registrar – so I didn’t get seen until an hour after my appointment time. That was fine – I got a lot of Eat Up! by Ruby Tandoh read. I wish I could give it to my thirteen year old self and keep her from developing an eating disorder to begin with. I wish I’d be able to read that instead of Wasted.

He checked my pressures and they haven’t gone down very much, but he wants me to try to get the prednisolone eye drops down to twice a day before trying anything new. He’s going to get me booked in to do the left eye again, then do the right eye a few weeks later. It would be tricky to drive my chair if they did both at the same time.

We’d been planning on going into town to do some shopping, but by the time we got out, there wasn’t time, so we just came home for lunch.

Mommy went to Grandma’s, then when she got back, we took Mac to the vet. He was a good boy, just very chatty on the way! If only all trips there were so easy.

The 20th of February.

Today has been very boring, but productive.

I woke up earlier than planned, which was frustrating but that at least meant I could get back to work on the computer early. Yeah, back on that.

I decided today I would back up the newer photos, the ones I’ll want to have on my phone, so if I decide to wipe it, they’re ready to put back on.

To pass the time while things got sorted and copied, I worked on the poodle. Now her arms and legs look all floofy (or as much as they can, when made of wool). I finished Altered Carbon, and then returned to The Blacklist. Did one of my minor workouts.

Also had some phone calls/emails about hospital stuff. I chased up my Andrew appointment, and he’s away for half term but I am assured it should be soon. Sorted out my next dental hospital appointment because that hadn’t come through. Going to clinic tomorrow to get some antibiotics because I am coughing up yellow phlegm of a morning and I’d rather it didn’t get worse. And finally, spoke to Dr. Blaney’s secretary, who has apparently sent a letter to the GP about steroid injections, but it only went today so we’ll see what actually happens.

The 21st of February.

Cripes. It’s been a long day, and it’ll be a long evening.

I woke up super early so we could go out at 9 to get clinic done. It was incredibly quiet, but I still got a good chunk of my book read. I saw Sridhar, and we decided that I only really go there for drugs, so let’s make it an annual visit and get the GP to dispense drugs. I didn’t get any antibiotics for my cough, but I gave them some phlegm to test so we’ll see what that says.

Waited for ages for pharmacy, then we went to Piccadilly to get my glasses adjusted as the right leg was rubbing on my ear bone and being painful. Also got a mint chocolate cronut from Medicine because it smelled too good to pass up.

Since getting back, I have been sat at the computer. I spoke to Apple on the phone, and they remotely accessed my iMac, but couldn’t understand why it’s done what it’s done. So I’ve linked everything back up to the iCloud, and am going to spend my evening manually deleting everything. Such fun!


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 15th of January.

Early start again – liver clinic this morning so we were out the door at nine. Philippa wasn’t in today, but I saw Kirsty and a nurse I know from TCT, who has changed jobs to help patients with the psychological effects of transplants and transition from BCH to the QE.

James was very happy with my liver tests; he went so far as to call them “perfect”. I’ll take that. He can’t quite believe it, after the way things were in 2013. To be 27 on Sunday is not something I thought I would do a few years ago. We weren’t sure I’d see 23. What a miracle my body is.

Got home and I had a coffee while I watched the first episode of season 4 of How to Get Away with Murder. The ending was a good twist – that’s a way to keep me watching. It’s so good. Viola Davis is amazing.

I was at the dentist and hygienist this afternoon. Dentist first, but not Liam as he has a new baby, so I met Elizabeth. She’s very nice, was very complimentary about my oral health, no problems there. Then Sandra cleaned my teeth and she was happy that we’d had success with the Oral B toothpaste.

Other than that, it’s been kittens and crochet. Make this flipping bear.

The 16th of January.

Bleah, it is too cold. Bloody winter. I do hate having to get up so early when is freezing too.

This morning it was the Women’s Hospital for menopause clinic. I got a bit of my book read, then I was called in by Elaine, Dr. Robinson’s clinical nurse. We had a chat about the past year, and about the procedure last week. Bit of concern about the coil, because that has to come out next year or 2020, and there is some worry as to how we retrieve it because last time, Miss Byrom couldn’t even see it. Will discuss it with her in follow up, although that has to be rearranged because the appointment they’ve given me is on the 12th. Can’t.

This afternoon, I went to sit with the kittens, and I watched Get Out. I thought it was really smart, the way Jordan Peele used the classic horror movie tropes like the deer hitting the car, but the most scary part is just the general creeping unease that grows throughout the film. I was glad to have my furry friends during the final sequence.

The 13th of January.

I was feeling frustrated at myself, because I had to completely unravel the bear I’ve been making because I was going to run out of wool if I continued with the hook I’ve been using. Start again! However, Singin’ in the Rain is on and it never fails to cheer me up.

I was also annoyed because Daddy and I went to see Coco, but my experience was marred by the man behind us constantly talking to his son. Talking in cinemas should be illegal.

When they weren’t blathering on, I very much enjoyed it. It’s so colourful and well told, and for once I didn’t sob so I might be able to watch it again. The songs aren’t great though. Not a patch on Moana.

Not much headache to speak of this morning, which was good because we had to be up early for eye clinic at ten to ten. It turns out that the pressures in my eyes have gone up, so I’m starting a new drop to combat that. I’m to try to bring my dexamethasone use down to twice a day, then switch to prednisolone and get that to twice a day. Every time I’ve done it in the past it’s resulted in pain but hey, I’m a trier.

The 14th of January.

It occurred to me this morning that next Sunday is my birthday and I really haven’t thought about it at all. Got no plans, haven’t asked for anything. Not my usual self at all. I suppose I have just had too much other stuff on my mind!

Today it was back to being productive. This morning, I watched Sunday Brunch and restarted the bear. Over the course of the show, I finished the head, although even with a much smaller hook, it used more wool than I expected it to.

After lunch, I had to sit in silence so I could finish writing my blog post for Anthony Nolan. I took a break to watch an episode of The Biggest Loser with Mommy while she was not at hospital with Grandma, then I went to sit with the kittens and write some more. However, they weren’t keen on sitting still, and then I choked on some of my water which was terrifying for them and for me, so I returned to the living room where I got to the end. It’s a little bit longer than they asked for, so I’ll ask Mommy to proofread it, see if any of it needs cutting, then send it to Lucy.

The 9th of January.

Well it’s been a curious day. I had to get up at quarter past five to ensure I had time to drink a litre of water before 6am, from which I had to be nil by mouth.

We arrived at about quarter to seven, and had to wait outside the Short Stay Wellcome Unit until someone let us and the two nurses without working passes in. Then we sat in the waiting room and watched Good Morning Britain until someone came to take me to my bedspace.

I was in the corner of the room – it used to be the ICU when it was the main hospital, so the bedspaces are massive and it means I am not crammed next to loads of people. I have been here before but we can’t remember what on earth for.

Mr. Titley came to see me, and he ran through once again what was going to happen. Examination under anaesthetic, possibly biopsy, possibly smear, possibly photographs. In the end, none of those things happened, just the exam. I signed the consent form, and off he went. Then I met with the anaesthetist, Dr. Allan, who was very nice, as all anaesthetists are. We talked about why he didn’t want to knock me out – same as Dr. Thompson, in that I’d end up stuck in ICU and if they ever did wake me up, my lungs would be in worse shape than they were going in which we can’t have. He had to talk me through all the risks of epidurals and regional blocks etc, which I was happy to take, then he went away and I finished being admitted by the nurse.

Miss Byrom wasn’t expected to arrive until about ten, so I didn’t get changed until twenty to, and I’d not been ready long when a porter came to get me so my timing was impeccable. I started off in the little anaesthetic room, where the trainee anaesthetist got stuck up against a valve in my wrist, so Dr. Allan had to stick the cannula in halfway up my forearm. I needed it so they could give me a bit of antibiotics and fluid so there was a balance against the spinal injection when he did it. When it came to that time, I had to sit with my legs over the edge of the bed, and hunch over my pillow on my lap. I got sprayed with super cold cleaning spray all over my back, then there was a small amount of local which felt the same as always, and then he did the regional block injection which I didn’t feel at all. All I noticed was a spreading feeling of warmth from my bum downwards, which was sort of nice but also disarming. I could move my legs to get them back on the bed, then I had to wait for them to get heavy before we could do anything more. I didn’t expect the sensation to be so acute – despite my brain knowing that I have the muscle strength to move my legs, I physically could not lift them, not even using my arms. It is absolutely bizarre.

At that point, we could move through to theatre, where my legs were put in the stirrups, and nine strangers got to see my vagina. That was interesting, because I could see them being flopped about into different positions, but I had no feeling at all; it was like they were broken, like they belonged to someone else. Then my vagina got sprayed with the cold spray to test if I could feel anything, which I could not, so they were able to begin. As far as I could tell, Miss Byrom tore through the adhesions again, then there was just a lot of shoving – I was aware of pressure, but no pain. It is entirely scarred, so no biopsy would tell us anything, and Mr. Titley cannot do any surgery to help. It took them about 20 minutes of shoving and looking to decide this, then some packing and a catheter were put in, and they started discussing what might be done next. It sounds like I’m going to end up with some kind of custom made silicone dilator but we will have to see. Emails must be sent.

Once covered up, I was taken to recovery, where I got a hot blanket which was so beautifully toasty, and we waited for my theatre notes so I could come back to the ward. And here I have sat since twelve, waiting for the anaesthetic to wear off and the catheter to come out. I have had coffee and a panini, and can move my legs independently again, which is nice. It still feels like I am sitting on a cushion of jelly, five hours later, but the catheter is out and I’m hoping to be able to pee in the next half an hour so I can then go home.

For all the NHS crisis talk, you wouldn’t know it here. I have been taken care of wonderfully, they are showing no signs of stress and I haven’t got angry at anyone.

The 10th of January.

I was woken up by Mommy telling me she had to go to Grandma’s because she was being taken into hospital. The cough she seemed to be incubating has definitely matured into a nasty chest infection and as the day has gone on, she has had tests and been admitted to have IV steroids and antibiotics while being on 5 litres of oxygen. That’s more than I was using even when my lung collapsed so she is really quite unwell. Apparently the doctor was not exactly optimistic.

My day has been a pretty quiet one, as one would expect the day after surgery. I was supposed to be going to a clinic at St. Giles but I cancelled that – I’m not sure how productive it would have been, and we’ve agreed I’ll reschedule once I’ve had my fancy MRI.

I had a couple of other phone calls; one with Adam from Black Sheep about my hair colour, one with the eye department at the QE to sort out an appointment, one with Lucy from Anthony Nolan to discuss press for Still Standing, and one with a lady who is going to come and view the kittens on Friday.

Speaking of them, I watched some more of Big Little Lies with them asleep in my arms. I’m almost reluctant to allow their adoption!

The 5th of December.

Ugh fuck I am tired and sad and stressed.

First thing I had to do was to out with Mommy to the sorting office to pick up my Christmas shoes, but that was the only good part of the day.

When we got back, I wrote up a blog post, and that took longer than it should have, which was bothersome. Then Rosemary came for lunch, so that was distracting and meant I couldn’t get on with more jobs.

I had some of the soup and cheese scone that Mommy had made, then I got on with my planned work. There are just loads of questions that keep coming up in the organisation of this event – it is a lot more complicated than I had imagined. I sent Daddy an email with some questions which he had additions to, then he got angry with me because he misunderstood my reply. I think we are friends again now though.

After that, I got my crochet out and have essentially completed one present. Two more to go. Then two other things to make. Sigh.

The 6th of December.

Mood greatly improved, despite a dodgy sleep and an early start. I woke up at three, then again at half five, after which I didn’t go back to sleep. Really hoping tonight is better.

I had haematology clinic this morning, where I met a new reg called Dr. Hussain. One of the first things he asked me was if the paper about me had been published yet, to which I didn’t know the answer. Just because I am the subject, it doesn’t mean I am kept in the loop. He didn’t have much to do for me, except my prescription, and took up the majority of my appointment. Then the pharmacists wanted to know about how my eye GvHD was treated, so I did some educating. Always teaching.

Pharmacy were going to take ages to fill my script, so we went into town to pick up two bits from Selfridges – Daddy’s Secret Santa for work and Jonathan’s birthday present. Back to the QE, picked up my drugs, home.

This afternoon, I did some crochet, and had a conversation with a chap from the venue of the event I’m organising so I could ask him the questions I’d talked to Daddy about. Once I was satisfied, I got the booking form back to him, so I should be able to announce it tomorrow!