Archives For February 2015

The 26th of February. 

I have such fat hands!it is obviously going to take several days of furosemide to get rid of the fluid. It is bizarre to have fat palms. There are no dents in my hands unless you press into them. 

I woke up with a very dry, sore throat, and trying to talk, I sounded like Chewbacca. But I was in my own bed which is all that is important. I gave Mommy her birthday present and card. I hadn’t been able to wrap the earrings – my hands don’t really work. Writing is making them ache. 

So I’ve spent my day going back and forth from the bathroom as that’s what diuretics do. I haven’t been able to crochet. I will just be quite useless until this fluid is gone. It hurts more than you would think. 

The 27th of February. 

It just doesn’t stop, does it? The fluid is slowly going, after having 60mg of furosemide, but now it looks like the GvHD in my skin is flaring up on my torso. It might be a side effect of the fluclox but I don’t know. It would just be fucking typical that having been off steroids for a month, the fluid finally draining from my face, I might have to go back on them and everything be ruined. 

Another day of not doing much at all, because I feel like a useless heap. My hands can do most things now, so I started doing some crocheting late afternoon. I’ve made up Benedict the Chimpanzee, and I’ve done the body of Georgia’s bear. Christine has come home this weekend and she brought us brownies! I had half of the triple chocolate one because the others seemed too much for me to consume. 

I’m sick of being afraid all the time. I haven’t had the slightest chance of normality since July, when I had to go back on steroids and lost all my muscle mass. I just want a break. 

The 24th of February. 

Okay so I’m still here. Slight change of plan. This morning I woke up insanely, painfully swollen. I could feel my face in a way that usually, one cannot. Igor did a bit of a double take when he saw me as I don’t think he could quite believe the amount I’d expanded since last night. Anyway. My infection markers are now negligible, so he said we could either take the line out today, or pin down Andrew and see if he could inflate my veins in the next 24 hours. Something magic happened, because he’s going to squeeze me into his list tomorrow! What time, I don’t know, I am just grateful to be being fixed!

My neighbour snores extremely loudly. Earlier, she went down for an endoscopy, but upon her return, she phoned multiple people to tell them she’d had keyhole surgery, and had a bag outside which some bile was draining into. Sounds like gallstones to me. Anyway, she fell asleep and her snoring was becoming incredibly irritating. Thankfully, she got so loud that she woke herself up. It was quite phenomenal. 

Had to disagree with nurse Rowel tonight as he tried to give me 80 of clexane when I’d distinctly heard Igor say to do 40. Sorry but pretty sure nobody would cut me if I was going to just bleed everywhere. 

The 25th of February. 

Waiting is the worst. I had double Zopiclone last night so I’d definitely sleep, which was pleasant, until I was woken by people offering me breakfast even though I was nil by mouth. I declined. 

Igor came and said it would be between ten and three, so Mommy and I just twiddled our thumbs, waiting for angio to call. I am so glad I’ve been able to hijack the wifi for TV or it would have been even more dull. We had just started watching Graham Norton on iPlayer just after two when the nurse came to get me!

She and a porter took me down on my bed, and we did all the checklist bits. There was a man snoring in recovery so loudly that the ward manager had to come and find out what the noise was! Lovely Bruce who always looks after me was there and he came to make sure I was okay. Everything was fine until the actual procedure was happening. It wasn’t Andrew, it was the man who did half of the venogram. A nurse was doing the sedation – I had 4 of midazolam and 50 of fentanyl but it didn’t seem to work at all – I felt all three inflations. It was awful and I got really tearful. Andrew came to see me in recovery and he felt really bad and said next time I must have more because I seem to be building up a tolerance. Bruce came to talk to me to take my mind off things, then Rowel came and I got some taken back. 

I cried at Mommy, then I was supposed to lie flat for four hours, but I decided to do it for two, then I sat up for an hour. I was allowed to leave at seven, we had fish fingers for tea, and now I just want to start deflating. 

The 22nd of February. 

My body feels like a wreck. I barely slept last night, with things hurting that I didn’t know were affected. My brain is on fire because I am hurtling through multiple scenarios of what the next six months might be. I daren’t think much further ahead. 

I watched Sunday Brunch and other things while I worked on Benedict. I’ve got very little of him left to do no because I’ve worked so solidly. 

I have nothing to say. I am so exhausted and so desperate for it to be tomorrow, I just need them to do something. I will go in there myself and force them to see me and the mess I’ve become if that’s what is necessary. 

The 23rd of February. 

Back in the QE. Inevitably. 

I was woken by Nicola ringing to see how I was, so I told her how my life was essentially ruined and she promised to ring back once she had seen Ram. 

We waited all morning, and having heard nothing by lunchtime, we decided to ring back to find out what was going on. Ram had arrived and gone straight to a meeting so was unavailable, so Nicola was waiting for Sandeep to finish on the phone so she could talk to her. By two, I was getting really stressed so I decided we should just go to clinic so someone would physically see the distress I was in. 

However, on the way there, I had a phone call from Igor, King of Specialist Regs. He’d heard what was going on and decided to admit me and he’d take the line out in the morning. So we turned the car around, stopped at M&S to pick me up some dinner and went home to pack a bag. 

Now here I am in a bay on 625. I’m having IV antibiotics tonight and tomorrow morning, then Igor will take the line out after ward round. I’ve managed to latch onto the TCT wifi so I will be watching Broadchurch no matter what!

 

 

The 20th of February. 

Ah a bit of baby-squidging can fix me every time. I woke up and did not feel brilliant because I’m extraordinarily full of fluid today so I’ve got a ridiculous amount of chins and my arms are getting painful. I didn’t really feel like going out this afternoon but I thought seeing the Coe-Winningtons would make me feel better and I was right. 
During the day I have finished and made update Winston so he will be ready to go to Heidi’s! Now I begin Jamie and Georgia’s monkey and bear. 
So yes, mid-afternoon Mommy took me to meet Elle, Ben and Luna. She is getting so big and fat which is my favourite kind of baby. Speaking of babies, also in Starbucks was Greg Rutherford with his baby! His baby was quite angry though. 
We spoke to the QE regarding my line. They need to talk more, we have to monitor my temperature, if I feel at all unwell we have to ring 625, and on Monday morning we have to ring back. I bloody hope they form a plan because this is becoming intolerable. 
The 21st of February. 
I had a double Zopiclone night. I was fine, then when going to brush my teeth, I was coughing so much, I got really out of breath and upset about my arms, and how I’ve been wanging on at my doctors for weeks about this, and it’s taken so long that now the line is infected and it’s even more complicated to fix. Essentially a lot of “it’s not fair” self-pity that got me rather worked up and incapable of sleep. 
I got up at ten, and after watching Saturday Kitchen, Mommy washed my hair and I’d just finished drying it when Aunty Hilary and Uncle Jeremy arrived. Yesterday they found themselves with a suddenly free day and asked if they could come and visit. We had nothing on, so up they came! We had a nice catch-up, Mommy roasted a chicken and we watch some athletics. Plus the saga of Taid’s phone (it’s as exciting as it sounds), bless him. He makes his life so much more complicated than it need be. 
They were on their way at about half four, so since then, we have taken down all my cards (83 at final count) and I’ve started on Benedict the Chimpanzee for Jamie. 
 

The 18th of February. 

Right. Well. Hm. I was having a really good dream when my alarm woke me up this morning, but I had to get up because the PIP assessor was coming at 9. She was not a dragon as I had feared, but was in fact very nice and it’s all fine. After reading my file, she wasn’t sure why she had to see me but she came, I answered all the questions and she was gone by ten to ten!

My line site has just been hurting more and more, and the veins around it are much more prominent, so I decided we needed to go to clinic and get someone to look at it. I was right, because Ram’s pretty sure it’s infected and needs to come out. But if we do that, the vein might collapse. Sigh. Ram tried to ring Andrew but had to leave a message, but he did say it was urgent so I am keeping my fingers crossed that that makes a difference. 

We didn’t get home until two, so there was just time for lunch and some work on Winston the Aardvark before I had to go to the dentist. He and the hygienist were happy because I’m an excellent patient and I brush and floss twice a day. 

The 19th of February. 

So all I have done today is work on Winston, with an overhanging hope that someone might ring me with a solution to the problem with my line, but to no avail. 

Mommy woke me up at ten – my body is just constantly exhausted right now. It’s probably partly to do with the fact that I have an infection and it’s taking its toll. Since eleven, I’ve finished Winston’s head and three legs, and I’ll probably do the last leg tonight. Then ears, tail, face and sewing together tomorrow. 

There was a brief break when Becky came over with some fabric samples that we’ve decided will work for wedding cravats. 

I have very little to report because I am just waiting for someone to operate on me. I’m managing under the theory that this is hindering my breathing, but if I have the procedure and everything is still this laboured, I will have to deal with the possibility that I might not be able to go anywhere independently ever again. 

The 16th of February. 

A much quieter day! But just what I needed. I was woken up by Radio WM calling to hear about my weekend so I told the story in brief in a rather sleepy, groggy state. I was then completely woken up from my Zopiclone slumber so I spent my morning writing about yesterday and pinching myself to prove it was real. 

After lunch, we went on a brief trip into Sutton to swap Grandma’s hearing aid (such excitement, I just know) and for me to get some new cleanser as my skin has gone completely mental. I blame HRT. 

This afternoon, I have made the arms of a bunny and written another summary of my life post for the new masses. I shall probably get the feet of the bunny done tonight during Only Connect. Joe Lycett was interviewed on WM this afternoon to talk about yesterday, and he was so lovely. Oh and Aisling Bea tweeted me to invite me to Channel 4’s Comedy Gala! Bwahaha I will slowly make all of the comedians my friends. 

The 17th of February. 

Pancake Day aka one of the best days of the year. Did not begin brilliantly. Mommy had gone out to take Grandma to Parkinson’s clinic by the time I got downstairs but had left me batter and other kit including the perching stool. However, I completely failed at making them – mine were more like omelettes. They were consigned to the bin. I had got out some prosciutto though which can’t really go back in the packet so I put it in a toasted muffin and had that for breakfast instead. 

For the rest of the day, I have been finishing the bunny I’ve been doing for a lady on twitter, so that needs to go in the post. Must start the aardvark now,that’s next on the list. 

For lunch, Mommy had a go at the pancakes and succeeded, so I had them with crispy parma ham and maple syrup. And yes, we’ll be having crêpes for dinner too. 

Alison came over while we were watching Super Cute Animals because we haven’t seen her for a while as she didn’t want to bring any bugs from school round. We heard about the saga of Jamie’s new phone, and basically, Yodel are incompetent. 

I spoke to Andrew Willis’ secretary this morning, but she doesn’t organise the procedures. She said she’d email the coordinator with my number and she’d call me. I haven’t heard anything, so tomorrow after my PIP assessment, we’re going to clinic because things are just getting worse.  

I’ve gained a lot of new followers/readers in the past couple of weeks and most of you probably don’t know my entire story, or are least the correct version of it, and if you did, I hope you’d be even more willing to sign up to all forms of donation, and tell everyone you know to. 

It all began way back when, in August 2007, three days after our return from two weeks in Majorca, my case of suspected anaemia was revealed to in fact be leukaemia. Acute Myeloid Leukaemia M7 monosomy-7, which is one of the worst ones you can get. My type of leukaemia demanded a stem cell transplant for any chance of beating it, as with just chemo, it would almost definitely return. First thing: a stem cell transplant is effectively the same as a bone marrow transplant. They do the same thing but are slightly different products – stem cells are extracted from blood, whereas bone marrow is sucked out of a large bone, although this is unusual in the UK unless the donor is a child, as their bodies can’t really cope with stem cell harvesting. None of this is an operation! Two sessions on a harvesting machine over two days will be your greatest inconvenience. You can’t move one of your arms but that is why you bring someone to feed you and keep you entertained. 

But I digress! I had three courses of chemotherapy, including one pre-transplant course which is the heaviest, most toxic set of drugs they can throw at you to make sure your bone marrow is completely obliterated so the new cells can set up home in a nice clean place with nothing to fight with. I was lucky enough to have my sister as a donor – there’s a one in four chance that your sibling could be a match, and with only one and her being a 100% match, I felt very lucky indeed. I had my transplant on the 19th of December 2007, and it went incredibly well and I was home on New Year’s Day, fastest transplant ever. 

Transplant #1.

Then for a while I was fine, until I found lumps in my face in April 2008. A maxillo-facial doctor confirmed that it definitely wasn’t bone, so I was sent off to the QE to have one of them biopsied. It was determined to be malignant, and my bone marrow was getting full of leukaemia cells again, because some leukaemia had lurked in my bone marrow and regrown when it saw the chance. My only chance of survival was another transplant, and that only gave me 20%, but it was that or nothing. We couldn’t use my sister again, so the hunt was on for another donor, and in the meantime, I had another barrage of chemotherapy and radiotherapy. A German chap was found, and I had my second transplant on the 31st of July 2008. I spent about five weeks in afterwards, because I got a lot of Graft vs. Host Disease in my skin and gut, which requires lots of IV steroids until it’s under control with just oral. GvHD is when the donor cells recognise the recipient’s as foreign and they attack, manifesting anywhere in the body. It’s good to get a little bit because you get Graft vs. Leukaemia, in case there’s any left behind, which didn’t happen with my first transplant.

After my tumour was biopsied.

GvHD in my skin.

I spent a couple of weeks at home, then started feeling a lot of pain in my eyes, and being very photosensitive. The doctors were unsure as to what it was, but after conversing with the Sick Kids Hospital in Canada, they diagnosed GvHD in the eyes. I lived in the dark for a month, my only relief being the few minutes of numbness I would have when the ophthalmologists put local anaesthetic drops in my eyes to examine them. The treatment that eventually worked was eye drops made from my own stem cells, which I had for ten days, and soon I could see again! 

On Halloween 2008, a Friday, I spiked a temperature. When this happens post-transplant, you have to go to A&E, so we did. I thought we’d be in for the weekend with 48 hours of IV antibiotics. On Sunday my eyes turned yellow. I started having awful pain in my abdomen, and being incapable of keeping down any food. My skin was turning yellow, then from yellow to green, and I was diagnosed with GvHD of the gut and liver. In early December, I was told that my bile ducts had shrivelled away to nothing, and I needed a liver transplant. Three weeks later, the 21st of December, with days to live, one was found. Those three weeks were a haze of ketamine and morphine, throwing up NG tubes because I literally couldn’t digest anything, and trying to not die. 

 

 Jaundiced.

After I got my new liver, things were relatively good. I did spend the next six months as an inpatient, waiting for my stomach to heal and learning to walk again, as the past few months in bed had completely depleted my muscle mass. I couldn’t even stand. I went home on the 11th of June. A slight complication – when I had the liver transplant, some of the stem cells from it migrated to my bone marrow, kicked out the German and set up home, meaning I effectively had a third, accidental, stem cell transplant. I’m the only person in the world all this has happened to. I got GvHD in my lungs from this transplant, and that’s what continues to ruin my life to this day. They are so scarred, only 60% of the oxygen I inhale is absorbed efficiently, then when I exhale, I can’t get all of the air out before I need to inhale again, so any activity that increases my breathing and heart rate gets me breathless very quickly. 

Once I was home in Summer 2009, things were mostly okay for a couple of years. I got lots of flus and infections which often resulted in a hospital stay, but never anything life threatening. In March 2010, I started a blood treatment for GvHD, as I couldn’t come off steroids without my skin flaring up, and photopheresis was my only shot at getting off them. Essentially, they swoosh my blood around in a machine, take out some of the white cells called the buffy coat, add some Uvadex, a drug based in plants from the Nile, then pass the cells through UV light which damages them, then they give you the cells back and the body heals the damage and GvHD in those cells. Magic!

In 2011, I had biliary stones (same as gallstones but not technically because they throw away your gall bladder when you have a liver transplant) a few times, and it was determined that I needed a new bile duct, because the sphincter at one end wasn’t functioning properly, so the bile wasn’t draining, just sitting there and slowly forming stones. I had the operation in early 2012, and then we thought everything was fine. Except it wasn’t. 

In 2013, I had a lot of infections, and one that started in September was particularly bad. I had stones again, and a superbug called klebsiella, which is resistant to antibiotics. Scans determined that the other end of my bile duct that the surgeons didn’t fix in 2012 was now not functioning, and they couldn’t get to it to fix it. The klebsiella could only be supressed with over a month of IV antibiotics, three times a day, too toxic to do at home. It will always come back though, and every time it comes back, it’ll be harder to get rid of, until we can’t anymore and I die. The only solution is another liver transplant, but my lungs won’t support me through the operation, but they’re not bad enough for me to be allowed a lung transplant. So here we are. 

If my German donor had been a better match, giving me a less fatal degree of GvHD, I wouldn’t have needed a liver transplant. If my liver had been of better quality (we know it was deprived of oxygen and the bile ducts were damaged), I would be able to drain bile properly and not be getting superbugs or stones. I was forced to take these donors because the only other option was to die, but that wouldn’t be the case if more people were signed up to be stem cell and organ donors. 90% of people say they support it but nowhere near that number are registered. Three people a day are dying, waiting for an organ, and 40% of people needing stem cell transplants are unable to be found matches because that person hasn’t signed up. That number goes up to 80% if you’re from a BAME background. There are multiple stem cell registers, including Anthony Nolan and Delete Blood Cancer. You only need to sign up to one as they’re all merged, but they have different age criteria. If we knew a disease was killing that many people per day, we’d do something about it. All you need to do is sign up. The forms are incredibly simple, and all you need to give is a spit sample to become a stem cell donor. The organ register needs nothing. Once you’re registered for stem cells, there’s a 1 in 1200 chance you could save someone’s life. Isn’t that incredible?

If you can’t donate for whatever reason, try giving blood or platelets. I can’t tell you how many transfusions I had during my time in hospital, and more blood products are always desperately needed. 1 in 2 of us will get cancer, but by signing up, maybe you can stop it being a death sentence. Stop someone’s family from going through what we are. 

Now.