Archives For transplant

The 6th of August. 

Day 1 of oxycontin. No side effects but no relief yet either. I’ve started on 10mg twice a day with scope to adjust it as I see fit. I have oxynorm too, and I’m just hoping between them, I might start feeling better.

I had a much, much better night. All sleep, no vomiting. This morning I watched the Olympic opening ceremony while I blogged and read the paper. I got suddenly, surprisingly emotional at the part with the Olympic Laurel, and the lone girl running down the aisle with her dove kite. I don’t know why; I’ll blame tiredness. I think the games will probably take over our lives again. I loved London; 2012 was a really excellent year and it was so different to how I saw Beijing, which was being trapped in an HDU cubicle, having just had my second transplant. I remember very little. 

This week’s Saturday cinema trip was Jason Bourne. I enjoyed it for what it was – mainly fighting. Fighting and running. And car chases. There is one in Vegas which is too long – you could easily have a nap in the middle. I very much enjoyed Alicia Vikander’s fashion; she has a grey jumper and a grey coat that I am coveting. I live for good knitwear, even when it’s boiling hot. Roasting outside, yet in the house I need a cardigan. 

The kittens are being mental tonight. The heat has sent them bananas. 

The 7th of August. 

I’m really hoping that the upsetting dreams I had last night were just my brain being weird and nothing to do with the new painkillers. One involved our garden being full of cats but not in a fun way, in an ominous, scary way and the other one was about a man in our house who was made of bags of skin. We’ll soon find out. 

I have had a very quiet day. Sunday Brunch this morning, painting my nails and sorting out the care package that will be posted tomorrow (well, that’s the plan). I just need to choose a book to put in, then pack it with tissue paper before it is all taped up. 

After lunch, I finished season 4 of Fringe while I weaved in the ends of the small blanket I made weeks ago. It’s meant to be for a kitten but I like it so much, it’s going to have to be a very special one. I have been deleting more photos from my phone and coming across lots of Nick and Neve. They were so cute and funny. I wonder how they are now. Hopefully they have learned how to behave with water; they were forever splashing it everywhere, making loads of mess. 

Mommy was in with ours this afternoon, trying to get them used to her because they’re still not big fans. I’m not sure how well that went when she spent a lot of time shouting at the women’s rugby sevens team – Christine does training with two of them so we’re rather invested in their victory. Nothing quite riles my mum up like sport.

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.

Continue Reading...

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 10th of April. 

I am exhausted today. I woke up at half past eight, which is admittedly earlier than usual but not ridiculously so, I have done very little (although that was not the plan), and yet I just want my bed. 

My morning was upstairs and downstairs (more so than normal, I mean). After my shower, I put my pyjamas back on so the moisturiser could sink in, and had my breakfast and coffee before writing up my 500th blog post. What a milestone. Congratulations if you’ve read them all. Then I returned to my bedroom to get dressed for going out to meet a friend this afternoon. However, she texted me to essentially ditch me for her boyfriend, and I am not cool with this. You make plans with me, you keep them unless you are literally in mortal peril. Being blown off makes me feel like absolute shit, and that may be contributing to my tiredness. 

So instead of going out to have a fun afternoon, I have been stretched out in a chair with a blanket over my legs and a napping kitty on my lap while I idly absorbed three more episodes of Fringe and tried not to fall asleep. 

I would like it to be bedtime now. 

The 11th of April. 

So yawny. But I feel better than yesterday, having had a decent sleep and a productive gym session. 

I woke up from a dream that I was about to have another stem cell transplant, which has reminded me that I need to get started on my talk for Anthony Nolan. Twenty minutes is the longest I will ever have spoken for and I need to plan what I’m going to say. 

This morning mainly involved kitty cuddles, seeing as I was going to the gym this afternoon. She’s so sleepy all the time, I think she must run around all night long. 

Went to the gym immediately after lunch because Mommy had to get to Grandma’s to take her to the optician. I wore another of my new sassy gym vests, although today’s was a bit wordy for anyone to read unless they stared at me. I stared a bit at a girl with an exceptional stomach but I will never look like that because a) my skeleton isn’t as narrow as hers and b) the only time I’ve ever had a flat stomach was when I was anorexic. Not doing that again. 

Hoarder Lady got a taste of her own medicine today because I had the dumbells and someone else was on the machine she uses in conjuction with the mat and box, but OH WELL boo hoo how sad what a shame. That is also how I feel about David Cameron feeling upset about people speaking about his dad. Well now he knows how Ed Miliband felt and he gave no fucks about that. 

The 19th of December. 

I am quite pooped from all the Christmasifying. It feels like I have been doing jobs all day. All for a good reason though, so I don’t mind at all. 

During Sunday Brunch I tidied all the area around my armchair in the living room (I tend to spread myself around). I was then supposed to sort out my wool and the remaining snowball hat, but Mommy went out so Daddy and I ended up in a rather long conversation about her presents, and before we knew it, it was lunchtime!

Cheese on toast, then I made up the last large snowball hat. I had to invent a pattern because I didn’t like the one supplied; it looked ridiculous. I did it as fast as I could but it still took me a good hour and a half. Daddy out the lights on the tree (after great discussion about which ones we had last year), and I put Elf on and set about decorating. The tree is my domain. Memories of the years I’ve felt lucky to have – a Disneyland bauble, Harrods and Liberty ones, my little yeti man with his special arm that I bought in November. Now I’ve just got to add my presents underneath.

And today is the eighth anniversary of my first stem cell transplant. I think I’ve run out of words to describe how incredible I find it that I’m still here. It feels like another lifetime. I spent that Christmas in an HDU cubicle. I woke up alone. All my presents had to be alco-wiped, and I remember Mommy and Christine sneaking in a Dairy Milk Buttons ice cream that I wasn’t supposed to have because of the “clean diet”.

Happy Marrowversary to me!

The 20th of December.

Oh I feel so festive. A day of total joy. Becky and I started the day at The Electric Cinema, ready to watch The Muppets Christmas Carol in our Christmas jumpers and sing along. Before it got started, there was a game of the pass the parcel and we won one! An R2-D2 book of cardboard cut-outs that you put together, and the Spongebob DVD. I also got some colouring pencils which might come in handy, you never know. There was a short film before the main event, of various comedians and actors singing to It Feels Like Christmas, and it was lovely. 

There is not much to say about the actual singing apart from that everyone took part with great gusto and we left full of cheer, ready to spread the word about peace and to keep love alive. 

Becky popped in to say bye to Nick, and I gave her the small snowballs for Jonathan and the Christmas card for her and James. After lunch, I watched Rise of the Guardians which is delightful; I love the Sandman. I’d brought my presents downstairs so I’ve arranged them under the tree, then I went to see Nick for a bit. We were having a perfectly nice time, catching up on Jekyll and Hyde, until he decided to do the most appalling, sulfurous fart, I was forced to leave. 

Tonight, The Sound of Music! I can’t imagine I’ll fit much tea in – I had some chocolate buttons this morning which have been abnormally filling? Even after I didn’t finish my breakfast bagel having choked on it (again). 

 

The 30th of July.

I hate dealing with incompetent people. 

This morning I blogged, very boring. I had a phone call from Jo, the BMT co-ordinator, saying she’d put in a request for me to have my line out on 621, and shortly after hanging up, someone from there rang me offering me a time which I agreed to without looking at the diary. However, when I went to put it in, I realised it was the exact same time as my appointment with the kidney man. I rang back and spoke to someone who didn’t know who I was and claimed they didn’t do this procedure on the ward. I disputed this, saying they clearly do, as I had literally just been speaking to someone who’d offered me a time for it which actually wasn’t convenient. But the numpty didn’t know what to do, so I rang Jo back and told her what had happened, and then I had another call offering me an hour earlier, which I didn’t think will work as I’ll need to lie flat afterwards. They’re waiting to hear from another doctor, and I’m going to ring back in the morning. Igor would have sorted this. 

After dealing with all that, I went and worked off some stress in the gym. Leg press is still out of order, but I got to do everything else. The smiley boy appeared and thought he’d squeeze a spot in the mirror, and at one point picked up a bar near my head, putting his face about a foot away from my face. It was somewhat surprising. 

Raccoon legs tonight. 

The 31st of July.

Today is seven years since my second stem cell transplant. They came from a German fellow who was just eighteen, and he was found in the nick of time. One potential donor had been unable to donate on the day he was needed, and we were all set to use Daddy. If we had, the cancer would almost definitely have come back and I’d be dead right now. Even though his cells got kicked out by the liver donor, we shared DNA, and without him, I wouldn’t have had to have my liver transplant or the stem cell miracle that came with it. The GvHD might have nearly killed me, but the treatment made me cancer-free for good. He’s a hero. 

This morning I sat around waiting for nurses to come and flush my line, but when it got to lunchtime and no one had showed up, we decided to eat and go out. They didn’t come while we were out either so obviously they suck. We had to go and pick up a duvet cover and take back a dress, then went to Pandora to get my German flag heart charm, and I got a Brownie Bomb from Selfridges to celebrate my marrowversary. 

I’ve made two legs of Jessie, and we’re no further on in getting my line out. Going to ring up on Monday and prod them some more. 

One day seven years ago that changed everything. He doesn’t even know. 

The 20th of December. 

I am now fully prepared for Christmas – all of my wrapping is finished! It’s all under the tree except Mommy’s Chanel stuff and big box. I need Daddy to bring that downstairs. 

I spent my morning updating the blog and reading the paper, then at lunchtime, Daddy and I went to see The Hobbit. It was suitably enjoyable – Kili is my favourite dwarf. Other favourite character is Galadriel because she is ace. The women in general in this film are all badasses. 

When we came back, I finished my wrapping while I watched Mr. Magorium’s Wonder Emporium which is one of my favourites. It is full of poignancy and I just adore everything about it. It fills me with warmth and magic and brilliance. It makes me happy to have lived. 

The 21st of December. 

Another day, another anniversary. Today is six years since I was given my liver. It’s nearly nine o’clock, and around this time we were getting ready for me to go to theatre. Paolo and Darius scrubbing in before they cut me open, took out an organ (or two – gall bladder goes too) and  put a new one in! Couple of days later, I woke up in PICU, incubated (not my favourite), went to ward 8, then a day or so later, it was Christmas. It feels like another life. 

This morning, I watched Sunday Brunch and put my new charm on my bracelet – it’s a letter to Santa. Six years ago, I got everything I could have wanted in another chance. Mommy washed my hair, then I had “posh” (read: Heinz 5 beans) beans on toast and watched Miracle on 34th Street. I feel super festive and I just can’t wait for Christmas. Eee!