Archives For skin

The 9th of January. 

No joy from the postman, nor is there anything on myhealth to show any upcoming appointments. Maybe on Wednesday morning we’ll ring a clinical nurse specialist, or try Andrew Willis’ secretary. 

I’ve had a very quiet day. I did a blog post, then iced three lots of cupcakes for Mommy to take to Grandma’s for her birthday. I got very chocolatey, sticky fingers. 

We had lunch, then Mommy went to Grandma’s and I went upstairs to do some extra moisturising because my skin has become really dry with this flare. Discovered that I could peel all of the skin off my left big toe, which was the worst affected area. Classic GvHD. 

For the rest of the afternoon, I watched two episodes of The OA while crocheting my jumper, but I’ve had to stop because the skin between my thumb and forefinger is so dry and painful. I need some seriously heavy-duty hand cream. 

This evening I have to prepare answers to some questions I’m going to be asked tomorrow. I’m taking part in a radio programme for BBC World Service about death. It will be more uplifting than it sounds. 

The 10th of January. 

Definitely going to ring someone in the morning about my arm – the upper arm has grown to 29.5cm in circumference (compared to 24cm on the left). This morning I did some Cats Protection admin and had a look through the questions for the interview this evening. I don’t need to prepare much, it’s all stuff I can answer off the cuff. 

I had a follow-up appointment at the dental hospital at 1.40pm, so we went out straight after lunch. I saw one of Mrs. Richards’ registrars who I’ve not met before. I explained what I was doing with the steroid paste and my concerns about it not staying where it should. She said that I’m doing it right, but it probably won’t stick because it is on the tongue. She went to confer with Mrs. Richards, who came in to have a look and decided we should put a little bit of steroid in the two sites that are being problematic. More painful this time, right in the raw tip of my tongue and on the top. Thankfully the swelling has gone down enough for me to be able to speak. 

Afterwards, we went into town so I could stock up on facewipes and toothpaste, and we went to Lush in search of hand cream. Ended up talking to the perfect sales assistant who has a similar problem so knew exactly what to recommend. Got a tub of Helping Hands. Let’s hope it does the job!

I’ve had the pre-interview for tonight’s 9pm one (another one cropped up for BBC WM randomly), and at half six the chap is coming to record me for the one about death. In between then and now, I’ll eat dinner. 

The 18th of March.

I hate having emotional outbursts at doctors. I had haematology clinic this morning, so we arrived at ten, and for two and a half hours I read So You’ve Been Publicly Shamed and I’m two thirds through. Ram finally called me in at half twelve and we discussed my arms and the rash I’ve got and how this is all really messing with my mental health. Having looked at the rash, Ram doesn’t think it’s GvHD, he thinks it’s infection so I’ve got ten days of fluclox (more joy) and steroid cream, and hopefully one of the other week get it to bugger off. I went on quite a rant about how my swollen arms and the idea of steroids completely crush my self-esteem and make me totally depressed. This left him pretty speechless, and after some silence, he suggested I meet with Ang who runs the counselling service, so after we’d finished, I had a chat with her. I’m not sure if I’ll go for a full session yet. Oh also, I have a fan – a man came up to me while we were waiting and asked how I was doing, then proceeded to tell me how great and inspirational I am, and how he was going to tell his wife he’d met me. So that was nice to hear.

After a quick lunch when we got home at two, I was back at the gym. It takes me so long to do so little, because my rests take up so much of the time. So puny.

Tonight, I’ve given Daddy a Creme Egg to cheer him up, and Hamilton fell down the hole in his second floor where the ladder used to be. Must replace that.

The 19th of March.

Rest day today. I went to Black Sheep (Michaela has bought her salon and renamed it) to get my fringe trimmed at half past ten, then we went to Pets At Home to get a replacement ladder for Hamilton and some more wood for him to chew, then to M&S to get some more juice, a pretzel and other such exciting groceries.

This afternoon, I’ve done the body of a bunny and part of the head which I’ll probably finish tonight.

I am just really concerned that my rash is GvH, not some infection like Ram thinks. Obviously I’ll carry on with the antibiotics and steroid cream, but I think systemic steroids are probably inevitable. And that’s a crushing thought. I have literally just got my face back to its actual size, and it would be devastating to lose that again. I hate not looking like myself. I know it stems from my anorexia, and I don’t have a desire to lose weight anymore, but I have serious emotional problems with my body not looking the way it naturally ought to. I’m not asking for anything drastic, I just want my arms and face to be the right size! Is that so much?

The 16th of March. 

Well I am still avec plumbing which was not the plan. Igor texted me at quarter to ten last night to say he’d not heard back from Andrew, and Ram wanted him to be in the loop before we take the line out. So it’s still in my chest and I’ll have to continue with furosemide until it comes out.

This morning I did some crocheting and wrote up a blog post, then after lunch, we had a trip into Sutton to get Lauren’s birthday card and a couple of warm, long-sleeved gym tops that will accommodate my arms, then Mommy actually took me to the gym. I was there until about half past five, and I noticed a disturbing trend developing among boys/men of having their hair shaved at the sides and a teeny tiny ponytail on top. They look ridiculous, and I can’t even imagine how they look when it’s not tied up.

Tonight I’m going to have to try and relace my trainers as Hamilton has eaten part of one lace and I can’t get it back through the hole. Bloody hamster.

The 17th of March.

UGH fuck I hate days like this. I didn’t feel like doing much so I’ve had a rest day, just finished off the elephant I’ve been doing, bunny next. But that is not what has me upset, obviously.

Igor rang earlier to say he’d spoken to Andrew, and he is very reluctant to do a stent because photopheresis is only expected to continue for several more months, not years. Apparently there are long-term complications. Also, they expect me to have a normal lifespan. This is news to me. Frankly, I’m not sure I want a normal lifespan because if that happens, who is going to take care of me when my parents can’t? I’d rather kill myself before it got to that stage. I hate to say that but it’s true. What am I supposed to do?

Anyway, there are other issues. Clearly venoplasties are no longer effective, this line isn’t working properly anymore, and it looks like my skin is flaring up but we can’t confirm that until all my blood vessels recede from the surface. I suspect it has though, as my fingertips and toes are increasingly sensitive, just like they were in Paris when it flared up then. So I might have to go back on steroids which would be a fucking horrific prospect. Joy.


The 4th of March.

I feel much better today. Clearly just the antibiotics messing with my digestive system. Also my skin is calming down, so I think the rash that was attempting to appear was just a reaction to the drug and not GvHD. We’ll carry on with the steroid cream until it’s gone though. 

Today I’ve made all the bits for Oliver’s monkey, so I’ll sew him up tonight. I was planning on trying to have a little go on the exercise bike, but then Becky and James came over after work so we had cups of tea and talked about James’ new job (he has now moved down here to be an electrician at the university). 

So there isn’t much to say about today. I really want to get back into exercising, then I move and I’m reminded how totally shit my breathing is right now. I want to have muscles again please!

The 5th of March.

No matter how many times it happens (and believe me, it’s happened far more than it should have), I never find it gets any easier to hear about the death of someone I care about. 

Last night, a friend told me that her son wasn’t going to make it to the morning, and I just burst into floods of tears. Usually when someone is poorly, I am able to prepare myself a bit, although there is never a point at which one becomes ready. I wasn’t prepared to hear this news at all. It hadn’t even crossed my mind that he might die. I have thought about it a lot, and I cannot think of anything that is worse than losing a child. Sometimes I think I’m lucky to not have to ever have the worry that it might happen to me. I just have to not think about the fact that it’ll happen to my parents.

It seems frivolous to even mention what I’ve done today because it was all pure distraction, like going to buy hamster food and Easter eggs. I did some cycling on the exercise bike.

Oh, I’m just so sad. I can only take comfort in the fact that his pain is over now. 

Lay down
Your sweet and weary head
Night is falling
You’ve come to journey’s end
Sleep now
And dream of the ones who came before
They are calling
From across the distant shore

Why do you weep?
What are these tears upon your face?
Soon you will see
All of your fears will pass away
Safe in my arms
You’re only sleeping

What can you see
On the horizon?
Why do the white gulls call?
Across the sea
A pale moon rises
The ships have come to carry you home

And all will turn
To silver glass
A light on the water
All souls pass

Hope fades
Into the world of night
Through shadows falling
Out of memory and time
Don’t say: “We have come now to the end”
White shores are calling
You and I will meet again

And you’ll be here in my arms
Just sleeping


And all will turn
To silver glass
A light on the water
Grey ships pass
Into the West

The 7th of September.

Lorazepam day means that I haven’t been fully with it. I’m fairly sure nothing drastically important has happened, but I will re-read anything I wrote in my other notebook.

I know I can’t read books in this state, so Sunday Brunch was an excellent distraction this morning, and after Grandma came round for lunch, she and Daddy went to her old room to watch the Grand Prix, and now she’s back at Boldmere Court.

I can feel where my skin is going to split and it hurts. I would so very much like to be back to my version of normal.

The 8th of September.

Tonight I feel terrible – cold, tired and shaking even more than usual. I will be in bed by nine tonight.

Photopheresis went fine, nothing to really report. My time was a little bit longer than usual, and as Mommy needed to be at Grandma’s for two today, we were anxious to get going on time. In the end she was only about ten minutes late, and I spent the afternoon writing stuff and watching rubbish TV.

We cleaned out Hamilton’s cage, had dinner, and now I am honestly just waiting for it to be bedtime because I am done with today. I’m sorry this entry is so short and uninteresting but I’ve got nothing to say.

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The 2nd of August.

Today turned out rather more eventful than expected! I woke up around half past four which is decent right now, and had a kind of slow morning pottering around, reading the paper. It was supposed to rain all day, but this afternoon it brightened up so I decided to just walk round the corner to Tesco to get some snacks for the trip on Monday.

However, while I was there, I got a text from Mommy saying “Come back now!” because Becky and James were back! They got engaged on Wednesday. So I rang her to say come and get me in the chair because I thought it would be quicker than me walking. So I paid for my shopping and fought with the plastic bag which got me flustered, then when I went outside, nobody was there so I went to the cashpoint and dropped my money on the floor which stressed me even more! Then Becky and James appeared with the chair while I was frantically trying to pick up tenners and eventually I got my shit together and sat down. When we got to the front door, I got out of the chair before it stopped, so all the forward momentum continued, and suddenly I was face down on my drive at the foot of my front door.

My first thought was “ambulance” but thank god I was wearing jeans so there was actually no blood. I have a fairly serious bump on my head, the bridge of my nose is bruised, and both wrists and knees have suffered some trauma. I have a tiny graze on my left hand and a scratch on my nose but we were very swift with the arnica, ice packs and bags of peas in various place so I will hopefully be presentable on Monday for X Factor selfies!

So I sat on the sofa covered in cold things, and we heard the proposal story and gave them their cards and gifts, then they had to go before James’ parents arrived. I wanted to finish my trip so Mommy took me to Jen’s and I bought some pic’n’mix, where I felt like Bambi in a zoo.

Since coming home again, I have sat in the armchair, had coffee and had bags of peas on my head and eyes.

It’s a good thing I was planning on conserving energy this weekend.

The 3rd of August.

I ache less than I thought I would. My knees are swollen and bruised, and I can’t put much pressure through my right wrist, but it’s okay. The facial bruising is fairly minimal, and my glasses cover most of it. Bump on the head isn’t great though.

I was awake early but I tried to stay kind of relaxed and sleepy, only allowing myself an hour to read, then going back to podcasts in the dark which I think has helped ward off trembles today.

I had kippers for breakfast, and Sunday Brunch. Becky and James came over again this afternoon, and this time I actually saw the ring! With all the kerfuffle yesterday, I never looked at it! We are already discussing ideas because I am Maid of Honour 🙂 they showed us photos from the hotel and restaurant and lighthouse and they were all beautiful – he planned it so well! Excellent job, James.

I went upstairs for a bit and finished off the book I’ve been reading in bed, so that’s another ticked off. We made John Whaite’s cookie dough brownies and had those for pudding tonight, and when I instagrammed a photo, he retweeted and replied to it! Such fun.

Oscar has been walking (or not) really terribly today and I am getting seriously concerned about his remaining length of life. Like I am glad Christine is coming home on Friday.

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The 31st of July. Happy Marrowversary to me! Six years ago today, I had my second stem cell/bone marrow transplant from an anonymous German chap, only a year older than me. I don’t know how I feel about it now – yes, he gave me all the GvH that destroyed my liver, but without him, I may not have even got there. I do wonder sometimes if he remembers, if he thinks about me at all. This morning I worked out which felt great except at the end when the postman arrived and I had to answer the door all sweaty with my hair scraped back, such an attractive state. I did say “You could not have come at a worse time’! Mommy washed my hair, then we went out for lunch to celebrate my marrowversary! We went into Pandora to get the charm that is customary on these occasions. I got the passport, as we went to Paris right before my second transplant. We went out to The Balcony Brasserie in Selfridges, where we shared the charcuterie and seafood boards with some peas and broad beans, then Mommy had lemon meringue pie and I had Oreo cheesecake and a virgin apple mojito. Then I bought myself some nail varnish, masara, aloe vera gel (not such an exciting treat) and we came home! We watched some tv and ate a hot cross bun each, then went to pick up Daddy from work before going to see Wicked! It was fun, although it brought back loads of memories of when Lauren and I were supposed to be Elphaba and Glinda, just before I relapsed, and I may or may not have wept at For Good. I had such visions of us both singing that together and we never got the chance. Despite the family behind us have zero theatre etiquette skills whatsoever, I’ve had a wonderful day. The 1st of August. Well I am so tired, I tried to eat a chocolate mousse with a fork tonight. It would have worked, but taken an awfully long time. Also, one night of bad sleep and the trembles are back with a vengeance. Spent the morning waiting for Katie the nurse to come and flush my line and change my dressing, although she did it so dreadfully that we had to redo it after lunch. When she was gone, I worked out but not particularly efficiently. Not sure what was off with me today. I caught up with Utopia, Mommy and I finished the series of The Biggest Loser Australia, and I wrote up a blog post. Oh, I’m so tired. I don’t like today and would like to go to bed please. Which is such a contrast to yesterday. My skin is so sore. photo 1 photo 5 photo 3 photo 2 photo 6 photo 7 photo 8 photo 11 photo 12 photo 13