Archives For transplants

The 24th of February. 

Ugh, I feel like trash. Have done all day. I had a bad night, and got woken up early by the man who came to fit the carpet. Joy. It took longer than usual for me to get up and dressed, because I kept having to stop to breathe extra oxygen. 

Since then, I’ve kind of felt like I’m suffocating all day, so am trying to do very little. I can’t get a deep breath in, and neither my inhaler nor extra oxygen have helped. Just have to hope that a good sleep tonight sorts it out. 

Three good things to mention: the compression garment hurts less today, Christine has come home for the weekend, and NHS England have committed to definitely routinely funding second transplants! Finally, someone in there saw reason/had some compassion and the funding has been reinstated. 

The 25th of February. 

Breathing is very difficult and it is making life very tiresome. I am back at the stage where I am no longer capable of washing my own hair because the activity is too exhausting, and the shower is one of the few places I cannot take the oxygen. I have been able to take deep breaths though, so there’s that. 

Compression garment is back to being painful. Obviously yesterday was a fluke, worse luck. 

Had a really exciting afternoon – did my Cats Protection admin, which involved taking cats who were adopted last year off Catalog. Basically inputting all the microchip and neutering data, and all the adopters’ details. Really, very thrilling. Then, while not paying attention to the rugby, I worked on a new doily. I am such an old woman. 

This evening, we have been out to Tom’s Kitchen at The Mailbox for Mommy’s birthday (which is tomorrow). It didn’t start off brilliantly because Daddy insisted on parking on the street, so we got wet going in, then the disabled doors were broken, so we had to carry my wheelchair up steps to get inside. So I was annoyed, but then I got over myself. I had to have the truffled mac’n’cheese to start, because it is ridiculously delicious, then I had roasted pollock and pea risotto, and that was also excellent. I had no room for pudding though, and was very ready for my bed when we got home. 

The 20th of February. 

I so want to be able to breathe normally again. Or at least, normally for me. To walk from the living room to the kitchen without needing to recover, to not need to spend the first hour of every day coughing up endless amounts of crap. I suspect Andrew won’t be able to get me in next week because he’ll be only just back from half term, so I have to be patient. I am just so tired. 

I spoke to the orthotics team this morning and I’m going in tomorrow at 9.30, presumably to be measured for a sleeve that goes over the hand. 

The rest of the day, I have been waiting around for Mommy to be available so we could bake brownies with the triple double chocolate Oreos in. At one point, we almost got started, then there was decorating chat, then Alison came over, so an hour after going to the kitchen, we began. I made sure we cooked them for the full amount of time, so hopefully they won’t be underbaked like usual. 

Good news! NHS England have announced they “are confident” that funding for second transplants will become available, but this is not yet confirmed. It also begs the question of what the hell has the anguish of the past six months been for? The pressure is not off. 

The 21st of February. 

I think the steroid eye drops are working – I had to wake up at quarter to seven, and it took much less time for my eyes to adjust to the light. Hooray!

Up early to see the orthotics team – Chris is on annual leave this week so I saw Pete, the clinical lead. I explained what had happened and showed him the pictures. He took some more measurements (and was pleased I had worn a jumper with easy arm access), and with any luck, I’ll be able to pick up the new sleeve tomorrow after haematology clinic. 

Before going home, we went into town so I could return the jumper I bought the other day, and I got a birthday card for Mommy. Her present is on its way, so if it arrives in time, I’ll wrap it on Thursday while the dining room is being painted and the fumes will force me to retreat to upstairs  

This afternoon, Daddy and I went to see Hidden Figures. It is really superb. I adored all of the costume, especially Janelle Monáe’s dress at the beginning. Loooove. I read an article about the three women (Katherine G. Johnson, Dorothy Vaughan and Mary Jackson) in New Scientist a few weeks ago, and have been really looking forward to seeing it since then. I can’t believe I did not hear about these women until now. And I am worried that we are going back to the time they came from.

 

The 3rd of October. 

Ugh. There has been a cloud over today as I found out last night that a woman I had become friends with over Twitter who had recently had a transplant, Amber Fox, has died. I knew she had pneumonia, but I really thought she’d pull through. It’s a feeling of disappointment I know far too well, but it never gets any easier. 

So this morning I just ambled around, feeling generally shit about the world and this fucking disease that just never seems to be diminished by the fight back. I wrote up the very long blog post about Christine’s birthday weekend, and made myself a cheese toastie for lunch. 

After lunch, I pretty much sat and worked on the crocheted present constantly. Nearly done. It will be very cute. Although I had to redo one part because I wasn’t paying attention and didn’t read the instructions properly. 

The lady from the new family next door came round with baby George to give us their phone numbers in case we ever see a burglar or something, and we gave them the keys Joan had given us. George is cute but he was grumbly because he is a bit poorly so I did not squidge him today. 

Shaki phoned to ask if I could take a kitten for a few days, so she’s bringing this five week old one round at some point this evening. It’s going to be so small!

The 4th of October. 

Shaki did not appear last night because her evening turned into a total disaster, so we had kitten delivery at ten o’clock this morning. Oh my god she is perfect. Her name is Olivia and she is so small and cute and soft! I could just look at her for hours. It’s such a shame we only get to have her for a few days while Shaki’s away. 

This afternoon I’ve been back at the gym and Vlad actually left me alone! Nice to not have to stop what I’m doing to have a conversation I don’t want to have. I didn’t see anyone who irritates me, and was even gently amused by the enormous toddler wearing cycling shorts under his normal shorts. What is it with guys at the gym who like to pull up their shorts so you can see their entire thigh? Not necessary, thank you. 

Upon getting home, I went straight back to the kitty. Looks like she will need lots of company because right now she is climbing the bars of the cage and doing tiny sad mews because she wants to escape. We can’t let her roam around too freely because she’s so small, she could get stuck anywhere.  

The 2nd of August.

The one day I’m actually able to sleep past eight o’clock, I got woken up by Mommy at ten past because she’d got me an appointment with a different GP at twenty past nine. We decided to go back because of the gabapentin causing me breathing trouble, so it needed changing. Because it was for this reason, I didn’t mind being woken. I got up and dressed as quickly as I possibly could, and had time to eat my cereal but not have coffee before we had to go out. 

Dr. Carter was a very sensible and reasonable person, and she actually listened to what I had to say. After some chat, she just asked what I wanted. I said morphine or oxycontin, so we decided on oramorph. I have to taper off the gabapentin first, so I’ll start it four-hourly on Thursday. Hooray!

Came home to have coffee and give the kittens breakfast. I spent the rest of my morning writing, and anxiously checking my inbox for replies from some people I sent my piece about second transplants to. 

After lunch, I watched the third episode of Mr. Robot, so I’m caught up on what’s been shown, and had just started one of Fringe when Sheila rang to tell me about a potential adopter for Nola. We went through all the information, and had got to the end when she was recanting a conversation she’d had with the woman, said the name of the kitten she’s interested in, and it isn’t one of mine at all! Whoops. At least she realised before I phoned the woman; that would have been very confusing. 

After we hung up, I have started on the cookie jar cat, and I’ve had responses to both the emails I sent which I am 90% happy with so it has been a positive day!

The 3rd of August.

It was not a good night, and the day has not been much better. I was really cold in bed, having to pull up my blanket over the duvet to be warm enough. In August. I despair. 

I woke up ten minutes before my alarm, which was set for half past seven because I needed to be at the (new) dental hospital for 10.35, but we had to leave the house earlier than we normally would because the cricket was on today and Edgbaston Cricket Ground is right by the dental hospital, so we thought parking opportunities would be scant. This turned out not to be the case; there was plenty on-site, so we were really early!

I checked in and we went to sit in the assigned area to wait for my name to be called. We both got decent chunks of our books read, and not too long after my appointment time, I was called in. Through the doors and down the corridor to the booth on the end, where I met a new dentist called Dev. We ran through my drugs and talked about how I’ve been, then he had a look in my mouth. There is an ulcer on my tongue at the back on the right, but we didn’t think it was massively problematic. He went to get Mrs. Richards to check, and she actually thought a steroid injection was necessary, just to give the ulcer a hand in moving on. This was a surprise to us but I wasn’t opposed to the idea. Dev got another dentist, a chap I have met before, to help him. He put some local anaesthetic into my tongue, but the first lot didn’t seem to have any effect, so he had a second go, and that one I felt. My tongue then went numb and swelled up as it should have, and then the steroid was injected into the ulcer. I am to go back in six weeks. 

As we drove home, I had to ring Grandma with my huge tongue and explain to her that we had left and Mommy would be with her as soon as possible, because they were supposed to be going to a funeral and time was being squeezed. 

We decided to actually pick her up and go straight to the church, where I would go home from in my wheelchair. However, when we arrived, it emerged that Grandma had a very enlarged leg and a potential DVT, so she was not going to this funeral. We went home, Mommy sorted out her stuff and went back to Boldmere Court to take Grandma to A&E, as the GP was going to take too long. 

I had to wait a good couple of hours before my tongue had gone down enough for me to be able to eat lunch, which I managed to make but my back did not make it easy as I had to go down to one gabapentin today. Like being constantly poked in the back with a cattle prod. 

The post arrived, and there was a letter for me from Andrew Mitchell, my MP, in response to my email regarding Anthony Nolan’s campaign to not withdraw funding for second transplants. He was not interested. He feels that they’re not cost-effective, not good value for money for the taxpayer. I was a waste of money. He also wanted to let me know just how much the government has done for the donor registers, which is all well and good but pointless if we’re not able to use those donors for their matches. So then I spent the rest of my day trying to write something about it. It was hard. 

Mommy got home about teatime. Grandma’s blood test didn’t show a DVT but that’s not 100% reliable so she has to go back for an ultrasound tomorrow. 

Morphine in the morning. Hopefully I don’t throw up.

Eight years that I would not have had if the current rules had been in place. Patients will be denied the chance to have the same based purely on some bad luck, and that is fucked up.

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The 27th of July. 

Woke up at stupid time AGAIN. I am sure it is the fault of the Tramadol even though it is supposed Fri have the opposite effect if anything. I would mind less if it was actually doing anything for the pain but I am in just as much misery as before, even more so today because the tops of my legs hurt. For crying out loud. 

This morning I had an appointment at the Women’s to see a nurse about the problems I have being examined. Apparently, radiotherapy can cause a condition called vaginismus. Yeah, I’m going to talk about my vagina, if you are upset about that then skip to the next paragraph. People don’t talk about this enough, there is no information, so I’m doing it. It’s very painful and annoying but it can be treated, hooray! I have been prescribed these things called vaginal dilators. There are five sizes, the largest of which is apparently terrifying and I will never have to use it. I start with the smallest, obviously, and I have to use it every day until it is easy to insert, then move on to the next size up. I will require lots and lots of pillows, a distraction and a lock on my bedroom door. It’s going to be interesting. 

While I was seeing her, Mommy went to see the pharmacist in haematology clinic (they’re on the same site) to ask how long we should wait before deciding the Tramadol isn’t working, as the doctor had said it would take a few days. It turns out she didn’t know what she was talking about because I should have felt relief within 30-60 minutes of taking the first dose. Obviously, that has not happened. My consultant was not around to prescribe more or something stronger, so we are ringing the GP at 8am to get an appointment and make them write something up for me. I can’t carry on like this. 

Before going home, we went into town again to get my Pandora charm for Saturday because we won’t get another chance before then. We got the diagnosis anniversary one too, because it’s only a few weeks away anyway. They just have to stay in the boxes until the days themselves. 

After lunch, Mommy went to see Grandma, and I set about watching more episodes of Stranger Things (only three left!) and writing up a monster blog post from Saturday and Sunday. It took all afternoon with the uploading of the photos too, then when I’d finally got it posted, something malfunctioned and the entire thing got deleted. Many obscenities were uttered. 

I went to give the kittens a stroke to lower my blood pressure, then did it all over again. I have a problem with the cats now, because they are all my friends, it means that they all want to be petted simultaneously and I do not have enough hands! Nettie is the worst – if anyone is getting attention, she has to get involved. So jealous. 

The 28th of July. 

Yep, I am no longer sleeping past six am it seems. That’s fine, it just means I’ll get through more coffee and Netflix will definitely be value for money for a while. This morning, I finished off Stranger Things. It was so good

I got a GP appointment today for 11.40, because we rang up at 8. I had the chiro first, and obviously we talked about what’s going on with my back. It seems that they know Mr. Harland very well; they refer patients to each other. Trine said that if she were having spinal surgery, she would want him to do it. She also explained what actual surgery he might do, which is really good to know. One of the receptionists is training to be a doctor, and she was in surgery with him just the other week! I am feeling very confident about seeing him now. 

Straight to the GP who was on time, astonishingly. It was a lady I don’t know, and it didn’t go well. She hadn’t bothered to even look at my notes before seeing me. I got her to sort out the vaginal dilators, then we talked pain relief. She wouldn’t give me opiates. I have to take gabapentin in combination with the tramadol and regular paracetamol. I am not expecting it to work. I will try it and if/when it doesn’t work, I’m going back to hospital and getting Ram to write me up oxycontin or morphine. When we left I was so angry, I could just feel the tears in my face and couldn’t speak for rage. 

I calmed down after an hour at home, had lunch, and this afternoon my friend Anna came round. We had coffee and cake and lots of chat. Memories from school, of Miss Jackson, the deaths of our respective pets (R.I.P. Polo and Oscar), all the crap that’s going on with my body. She is a teacher, so we discussed that a lot. Secondary school, which I think is probably harder than primary. All those hormones. She said some very disturbing things about the way girls talk to each other, it sounds dreadful. They have no problem calling each other slags, they are of the opinion that if you are drunk or in a short skirt, you are asking to be raped. It is horrifying. They need Anna because they are not learning about feminism from anyone else. 

She left just after half four, and shortly after, a lady called Tracy arrived with her mother to view Nettie. Sheila rang me about it while I was in the changing room at the chiro, so I had to cut her off, but she emailed me the details and I set up the meeting. They are lovely people, very knowledgeable about cats and dogs – she has a boxer but she’s very timid and obviously wants something to mother. Nettie will absolutely fine with that; she is will be the alpha. Everyone was very well-behaved actually, But Nettie is who she wanted and Nettie wanted her. Perfect match. She’ll be picking her up in the morning!

Keep sharing and ask your friends to! Jeremy Hunt needs to see this.

The 25th of July. 

Well, I have some drugs. Not the ones I hoped for, but I have to try these first before I can get anything stronger. 

We rang up first thing this morning, and when Jo, the clinical nurse specialist we spoke to, rang back, she said to come in at 1pm to see a doctor. I then kept writing about Saturday until 11, when we went into town before going to hospital. 

I desperately needed to replace the ballet pumps I’ve been wearing – they are nearly ten years old and literally falling to bits. Topshop didn’t have a pair in my size, so I went to New Look, where I ended up getting the same ones in three different colours. Sorry Phillip Green, none of my cash for you. I also picked up some trivial stuff like moisturiser and birthday cards, then lunch from Pret which we ate in the QE car park. 

Up on 621, I waited over an hour for the doctor to appear. That was fine because I’d taken my diary so I could finish my writing. I got that done, then twiddled my thumbs and listened to music until I was called.

We had a chat, and she did some poking although to be honest that doesn’t really make it any more obvious where the pain is; it’s not muscular so it’s not tender. Just constant ache, made worse when I move at all. The strongest drugs she could prescribe were slow release double strength Tramadol, so I have to take that twice a day for a few days and see if it makes a difference. I’m honestly not expecting it to, but we’ll see. 

We had to wait in pharmacy for ages because there was a palaver over the fact that it’s a controlled drug, but we were able to leave at about half three. When we got home, the kittens were ravenous, practically chewing my arm off. I did apologise profusely but they don’t care. They got food; they’re happy. 

Tonight, I’m trying to get the video I made yesterday seen. It’s on YouTube, Facebook, Twitter and instagram, and I am begging everyone to share it with their followers. I want Jeremy Hunt to explain why he’s arbitrarily chosen this group of people who apparently deserve to die. Why he’s basing this decision on research that is 20 years old and has no plans to use current data or get any more, despite us constantly improving the science behind the transplants. Why he feels prosthetic penises are more important than the lives of people with cancer. What gives him the right to extinguish the last remaining hopes of people already going through more than he ever has. It is a privilege to be the health secretary yet he treats it like a game, and he gets to play God. 

The 26th of July. 

Terrible night. I barely slept at all for no discernible reason. The pain wasn’t unbearable for once, I wasn’t too hot, my brain just wouldn’t go to sleep. In the end, I started watching Stranger Things on Netflix and I am gripped. Loving it so far. 

I got up just before nine, and washed my hair for the first time since it was dyed. I wouldn’t mention it, but it had a slightly alarming effect. Because the colour is so vibrant, the water and shampoo made the dye run, and when I had dried my hair, Mommy noticed that most of the back of my neck had been stained pink. I was really glad James had let me in on the tip of milk being a great stain remover. Worked like a charm!

My day has been talking and writing. I got an email from a journalist from the Birmingham Mail wanting to talk about my video, excellent! Before I got back to her, I spoke to Simon at Anthony Nolan to make sure I had all the points I needed to cover. The writer, Anuja, rang me as soon as I replied to her, so then I talked to her and that should be in the paper very soon!

After lunch, I spent most of my afternoon uploading photos from the games on Saturday and writing because I am behind again. I’m not quite finished because I then got another interview request but it was email questions, so I stopped the blog-writing to answer them all in probably far too many words. I suspect I will be edited considerably. 

I am so tired. Sleep tonight please. 

The video is here, please watch it and share it with your friends.