Archives For hospital

The 22nd of February. 

New compression garment in place. Still not a fan. 

I had haematology clinic this morning, in the old hospital while the usual building is being refurbished. It’s not ideal, and it think they’re still getting used to it, but it wasn’t horrendously busy when I got there, so it was okay. The nurse said my weight out loud, and I made the foolish mistake of converting it from kilos to pounds which has freaked me out. Bah. I saw the reg that I saw last time, and all he really had to do was sort out my prescription for the next three months. 

We took it over to pharmacy, then went to check if my compression garment was in, but it wasn’t. Dean was in, starting a cycle of chemo today, so Mommy went to get a coffee and I went up to YPU to say hi, although I ended up being there nearly an hour, I think! By then, my prescription was ready, so we picked up my three bags, and were about to leave when my phone rang. It was the orthotics department! The lady who rang was obviously not familiar with my situation, because she said the sleeve was in, but then asked me to come in on Tuesday? I said no, I’m here now, and Pete said he would fit it today. She wasn’t keen on this and said she’d check with him and get back to me, but I just went there anyway, where I was welcomed. I had to wait for him to finish with a patient, then it was my turn. This one went on a little bit easier, although it’s still really tight on my elbow. Really not my favourite.

This afternoon, I’ve been avoiding the decorator man hanging the wallpaper, and stretching out my sore arm. This better be worth it. 

The 23rd of February. 

This is not going to be an exciting one. Obviously, the insane weather has imprisoned me inside all day, although thankfully I have not been gassed by paint fumes. 

No, my problems today have been fourfold – my ribcage is upset again from coughing, my breathing is depressingly terrible, and the compression garment is excessively squeezy inside my elbow and in between my forefinger and thumb. Lots of discomfort, no respite. 

I had planned on doing lots of Cats Protection admin today, but Daddy decided that in order to paint, he had to turn off the internet. I know that doesn’t make sense, but that’s what happened. 

I have therefore spent my day on my own, crocheting the current doily and watching random crime dramas. I had a break when I went upstairs to wrap Mommy’s birthday present, which was much larger than I expected. I am not entirely sure where she’ll put it. 

Oh, and I had a phone call from one of the nurses at the QE – apparently my CRP (infection marker in my blood) is 47 (which is high – should be less than 5), and she was just checking whether I was showing any signs of infection? Well, apart from the cough I’ve had for weeks, no, so that’s hopefully not something else I’ve got to look forward to.

The 10th of February. 

The news is so depressing, I have put Phineas and Ferb on instead. It is a nice distraction, and there are amusing bits for grown-ups. 

I had planned on being productive today, but somehow it did not really happen. I wrote up a blog post this morning, although in writing that, I’ve just remembered that I didn’t publish it yet. Will do that when I’m finished here. 

Mommy went food shopping, so I was twiddling my thumbs while waiting for her to come back so we could have lunch, but it took somewhat longer than I anticipated, so that was time wasted. Then after we had eaten, we decided to watch some more Case, and I can’t crochet while that’s on because I need to pay attention to the subtitles. 

So, two hours were gone on that, and now I have half a doily. One positive of the day is that I found another jumper that can accommodate my ginormous arm. The parka is not going to cope anymore, nor will it keep me warm, so when I go to the QE in the morning, I am going to have to wear Joan’s enormous fur that she gave me. Knew it would come in handy one day.

The 11th of February. 

One can never call a day when one is up at quarter to seven (particularly when that day is a Saturday) unproductive. I had another hospital appointment, this time with the eye department because of the ridiculous sensitivity that I’ve had for the past eight months. First, the chap could see that I had several lower lashes in my left eye growing inwards so he numbed it, then whipped them out with some tiny tweezers. There is also some mild GvHD acting up, not cool, so I’ve got some dexamethasone eye drops and hopefully they will do the trick. 

Went into town afterwards to get some toy stuffing, and got some more of my favourite chocolate from Selfridges as it was half price (slightly worrying – I hope it doesn’t mean they’re going to stop stocking it), alongside some triple double chocolate Oreos which we are going to put into brownies. 

Popped into Tesco on the way home, where I felt very overdressed, driving around in the fur. It’s not for supermarkets. Then I was starving by the time we got home, so we had lunch, and since then I’ve been crocheting Carol’s birthday present. Becky came round because I’d bought her some Malteaster bunnies, and she updated us on the local news, which is that the WHSmith has had its cash point ripped out. Plus school news was swapped for health news, and now I’m watching us probably lose to Wales at rugby. 

The 2nd of February. 

It’s been a very busy day. As soon as we arrived at the QE, we bumped into John Higham from the dental hospital (there with a family member, not ill himself), and then Janet, who adopted Monica from us ages ago. She’s doing really well, climbing up onto their garage roof, yet when she was with us, she couldn’t even jump onto the windowsill. 

Andrew saw me super promptly, which was excellent. He showed me the pictures from the venogram, and it’s quite obvious that what he did should have worked. He doesn’t want to go back in immediately, which is understandable, and having looked at my arm, our first port of call is going to be a compression garment which he is trying to get organised as an emergency (it normally takes two weeks to get an appointment). I have to keep it elevated, and squeeze a stress ball a lot to encourage blood flow, and see him again in a couple of weeks, when we’ll talk about next steps if necessary. 

We were meeting Naomi for lunch, and there wasn’t time to go home and back again, so we went into town. I bought a new jumper with large sleeves to add to my current rotation and spent the book token I got for my birthday on Negroland by Margo Jefferson. 

We got to Strada first, and it was full of elderly people obviously going to something at Symphony Hall. When Naomi arrived, I gave her the bunny I made, and she was delighted. She was very interested to hear about my most recent Anthony Nolan trip and to talk about the charity – she’s learning more about how they work because she’s choreographing the new show being created about Kids Company that’ll be on at the Donmar in the Spring. Must go see it, it sounds like it’s going to be fascinating. 

I had pizza and a chocolate fondant, neither really worthy of photos but very tasty. She had to go at half two because she was seeing Love at the REP, and we came home where I have done very little except squeezed a stress ball. 

The 3rd of February.

Bleah, my cough is extra rubbish today. I can feel the gristle in my lower ribcage as the bones grind together. It’s really not very pleasant. 

This morning, I did the blog post I should have done yesterday, and I started taking some diuretics. We thought it was worth a try to get some of this fluid shifted, so today has also involved more peeing than is normal. Maybe they, along with the stress ball squeezing and arm elevation, will help the fluid. Heard nothing about the compression garment.

After lunch, Daddy and I went to see Sing. It was that or Hacksaw Ridge, and I thought I needed the light relief of singing animals. I was not prepared for the ten or so children who were there – at a two o’ clock screening on a weekday, there should not be loads of kids, no matter what the film. If they’re ill, they should be at home, if not, they should be at school. I had to shush them several times because their parents were not doing anything. 

Apart from the children, I did enjoy the film. Rosita is my favourite – I love her and her piggy power.

The 25th of January.

Venogram day!

I was up at six, and having got dressed, I drank as much water as was humanly possible before my cut-off at seven. We arrived at ambulatory care at about quarter to eight, and we sat around for forty five minutes reading our books before the nurse came to start going through the checklist. It became apparent that the doctors wanted my potassium checking because it was high yesterday, but it was fine today. At half past nine, I was told to gown up because they’d be coming to get me soon, but then they actually didn’t arrive for two hours. There had been an emergency in angio so I was not angry, just bored and hungry. So hungry.

The nurse in imaging clerked me in (the amount of times I have repeated my date of birth, address and the fact that I am NOT PREGNANT today), then Andrew and the doctor who was working with him came to see me, and we talked through the plan. Andrew had the same theory as me, and the intention for today was to do the venogram and if we could do the venoplasty then he would.

I got taken into the angio suite, and everyone introduced themselves while I and the room got prepped. I got to be in the Who which is fun – normally I’m asleep for that part. While the doctor shoved the wire up inside my vein, the nurse on my other side stroked my hand and tried to distract me by talking about bees. I love that they do that kind of thing. We both knew what she was doing, but it is like a quiet contract we both entered into. They took some pictures of inside my arm, and it was found that I had a narrowing in the subclavian vein (not the superior vena cava like last time). I hadn’t had a massive amount of gadolinium (the dye they have to use because I’m allergic to the CT contrast dye they would normally use) yet so they gave me some fentanyl and midazolam, then I had a lovely nap while they inflated my vein. Hopefully that should do the trick, but if it doesn’t go down in a couple of weeks, I’ll have to go back to have something more invasive and permanent, like a stent. Let’s hope not.

The 26th of January.

Ooh I am so tired. Very long day. I’d not long finished my breakfast when my phone rang – it was a journalist called Christine who had got in touch with me via Anthony Nolan and wanted to do a kind of basic interview before she goes pitching the story to different publications. Sounds like it’s going to somewhere like Woman and Home or Woman’s Own right now.

When I’d finished talking to her, there was just time for me to eat some lunch and sort out my bag before I had to go to the station. I got taken to my train, but before we set off, there was an announcement to say there had been a fatality, so we were being diverted via Stafford, so would be skipping some stations. We eventually arrived in London forty five minutes late.

I had planned on going and doing some shopping but that seemed rather pointless and expensive considering the cost of cabs involved and the time I’d get to spend in the shops, so I went to Origin Coffee and had a flat white and a brown sugar cookie while looking over the NHS documents about second transplants. I get more angry every time I read them.

I sat and watched people go by for nearly an hour, then I needed to get a cab to go and meet Lauren and Amy for dinner. I thought it would be easiest to get one from Euston, so I drove back down the road to the station. I also had to pee and the disabled toilets at Euston are all out of service so someone had to let me in the baby change toilet instead, but at least it meant I didn’t have to pay!

I was able to pick up a taxi without too much difficulty, and he took me to The Diner in Camden. They found a ramp so I could get inside, then I got settled in a booth and had another coffee while I waited. Lauren was a bit late because the traffic was awful, but it was fine because there was a couple with two cute little boys nearby who were very entertaining.

When she did arrive, she gave me my birthday present of the Ruby Tandoh book, so I can make lots of tasty foods. Speaking of tasty foods, she ordered a vegan burrito and I got some pancakes with bacon to make up for the lack of pancakes on my birthday. Amy arrived mid-meal (she did say we could order without her), and we got to just have a nice dinner and talk about normal things, like Lauren’s move and an exciting project which Amy has been put forward for. I got my arms out, and Lauren found the size difference absolutely hilarious. She is one of the few people allowed to laugh. I’m actually fairly sure it’s got worse since yesterday but I just have to watch it.

I kind of had to leave in a rush, hauling my chair out of the door just in time to get into the Hailo cab. The driver was wearing shorts, which wasn’t then great for him when we got stuck outside the Anthony Nolan office gates and he stood around ringing bells until I got through to someone on the phone who let me in.

I was the first one of our group to turn up, followed by Jack, who is a supporter running the marathon (again), and Hayley and Jess who are both heavily involved with Marrow. We got started very promptly at eight, in a session facilitated by Ammeline, who does not work for Anthony Nolan. We began with an exercise saying what kind of animal we would be – I decided I am a panda because although everything seems to keep telling them to die, they just refuse to and I think that’s like me. Plus I’m cute. Then we got on to the subject of charity and Anthony Nolan specifically, what they do well and what they could do better. We were kind of biased because we love them, but we were able to come up withe some things.

I had to leave before we officially finished, because I needed to get back to Euston, although I don’t think it was going to go on too much longer. The car that arrived to take me there was a Mercedes, non-accessible, so I had to collapse the chair and put it up again at the other end, which was a disaster for breathing. It took ages for me to get back to normal.

I bought a hot chocolate and went to the assistance office, where the man told me to go down to the platform where his colleague would meet me. He did not appear, and after ten minutes of waiting in the freezing cold, I rang the office back and he was confused as apparently he’d rung the man “ages ago”. When he finally ambled up in his buggy, he was then pretty incompetent at putting the ramp on the train so having got up to my seat, I did not thank him.

We got moving, and I was desperate to sleep. However, I cannot sleep in a place that isn’t my bed and especially when I’m not even poorly, and I am paranoid about missing my stop. No sleeping was going to happen until I got home. Unfortunately, this train got delayed too because an engineering one in front of us had a problem so we got stuck outside Milton Keynes for forty five minutes. So dull. We made up a little bit of time, but still didn’t get to New Street until one. Tired, cold, in pain.

The 15th of January. 

It is going to be an early night tonight. Well, as early as possible. As in, I will go upstairs and watch Sherlock in bed so I can go to sleep straight away afterwards. I was woken not long after eight this morning by the builders next door using the angle grinder, and tomorrow I have to get up super early for liver clinic (which is now on a Monday morning). 

Other than the noisy builders, it has been a pretty quiet day. I wrote up a blog post, watched Sunday Brunch, and worked on practising crocheting cables. I think I’ve got the hang of it now which is most pleasing – being able to do them properly has eluded me for ages. 

I also watched three more episodes of A Series of Unfortunate Events – it’s too good and I can’t help myself. Neil Patrick Harris is so excellent, and I’m enjoying Cobie Smulders and Will Arnett too. Having listened to all of the audiobooks when I had to live in the dark, and several times again since then, I can’t wait to see how they do the rest of them. The first four books just won’t do. 

My hands are still very dry. Leathery, one could call them. And not a soft leather, like a stiff, hard, scaly leather. Moisturising all the time, but this is going to take a while. 

The 16th of January.

Sherlock was not even worth staying up for in the end. So many questions, so many things wrong with it. Mycroft is a fucking idiot. 

Anyway. At least my very early clinic appointment meant I got through quickly. Philippa and James both really loved their crocheted animals for their respective children, and we got to see the latest pictures of James’ new baby. Then down to the business of my body – I explained everything that happened over Christmas and how far we’d got in regards to fixing me. The only things that need to be sorted are my arm and eyes – James’ secretary is going to get on the case about my arm (and the dates I’d rather not have it on) and we just have to wait for the eye appointment.

Then we were on our way and home just after half ten, at which point I needed more coffee. I am very sleepy. The rest of my day has been spent yawning, crocheting nothing in particular and having multiple chats with Shaki about the logistics of kitten/cat movement. It is very complicated. 

The 3rd of January. 

Of course the day we cancel my chiro appointment because I feel like crap, my neck starts acting up. It was fine before today, almost as if it knows. So unhelpful. Still, we spoke to the QE this morning and I can go to clinic tomorrow so finally I might get some things done about my feet, hands and arm, which are the most pressing issues. 

The only other thing I did this morning was a blog post, and I had a nice sit with the kittens – trying to squidge them as much as possible before they go to the adoption centre. 

This afternoon, I had the joyous task of phoning lots of potential adopters. A couple of people have changed their minds or got kittens from elsewhere, so I could tick them off the list, and most of the other forms I had, I forwarded to the one fosterer who has most of the kittens in branch. 

Since then, back to crocheting. I think I’ll have another early night tonight; I’m still super tired, and seeing as I need to be up early for clinic tomorrow, I need all the extra minutes of sleep I can get. 

The 4th of January. 

Neck not so painful today, I knew it was just throwing a strop. Thankfully, clinic this morning was helpful. I saw a specialist reg called Praveen who I’ve not met before, but he was very good. He took what I said seriously, and has some solutions, or at least the beginnings of them. My hands and feet are probably GvHD, so just carry on with the steroid cream, and about the arm and the eyes, he went to talk to Ram. He came in to have a look and said to email their man in opthalmology (pretty sure they knew what it is but I need to see a specialist to be sure – probably an eye GvHD thing) and call Andrew Willis, which he did there and then. He wants a venogram and the request has been put in so hopefully that comes through quickly. 

Popped into town on the way home to get Grandma a birthday card and a present as it’s her birthday on Monday. Meant to get some thank you cards but I forgot because I’m a nitwit. 

This afternoon, I have been watching Nashville and Conviction while crocheting. Got two episodes of each watched, and I’m on the last stripe of the blanket. I haven’t actually tried to get in it yet – I will be mightily pissed off if it’s too small. It shouldn’t be. Fingers crossed. 

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. 

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