Archives For March 2014

The 27th of March.

I woke up with abdominal pain which was terrifying. I was able to go back to sleep and wake up again without it so it was just a pretend attack. We had to go out to hospital at half eleven to get to photopheresis for twelve.

A rather dull (in a good way) session – I didn’t alarm too much and  was finished by half past two. Afterwards, we popped into town so Mommy could pick up her new birthday handbag!

This evening, both Becky and Alison came over, so we had chats, but tonight I have been cold and tired. My white cell count was high today so I’m just hoping I don’t have an infection. Every day is so fucking stressful.

The 28th of March.

Woke up in pain again and this worries me. I checked my bloods from yesterday on myhealth and mu CRP was 16 which isn’t great, considering my white cell count too, but I checked back a fortnight and my CRP was 72 then, and I felt fine so we’ve just got to see what happens.

Photopheresis was a little bit lengthy today – my lines played up, the machine played up, it was all very boring, but I finally finished at about ten to three. Daddy and I were going to go and see The Winter Soldier, but we were going to be late and the Vue website was being a bastard so we postponed that until tomorrow.

James had come down as he and Becky are off to London in the morning, but she wasn’t home yet so he came here for a cup of tea and we had a chat. When Jonathan got home from school, James went to help him with the papers. Later on, he and Becky came back for some chocolate brownies made with an assortment of eggs, from mini to creme and caramel. I had one too, and they were rather tasty. I was lucky not to get a caramel one – I am not a fan.

I’m really looking forward to a big sleep tonight and no hospital tomorrow thank you.

The 25th of March.

Oh, my muscles hurt today. Arms, chest, abs, thighs, bum. Every time I move, I make a noise like I’m about ninety five years old.

This morning, Mommy and I went into Sutton for a Mother’s Day card and a Pritt Stick for Grandma, some interfacing, conditioner, chewing gum, mini Creme Eggs, a FireWire to Thunderbolt adapter, and some kettle bells so I can exercise with weights when Danny isn’t here. I also bought a hula hoop on a whim because I’ve always enjoyed that.

This afternoon, I watched the first Captain America on Netflix as Christine saw the new one yesterday and said it was super good. Daddy and I were planning on seeing it on Friday after photopheresis, so I thought I should probably know the back story.

Tonight I have been giving Oscar a good brush while we watch Lambing Live, some of which is rather gross. I’m also trying to decide how to get my hair done tomorrow but I haven’t done so yet.

The 26th of March.

I am so tired tonight! Why that is, I have no idea. My sleep wasn’t bad, I didn’t wake up super early and I haven’t exerted masses of energy today.

I stayed in my pyjamas until lunchtime, which was immediately a bad decision as the window cleaner soon appeared, then later, a man delivered my new wheelchair! However, he also picked up my old one which was in the garage, so I had to go outside to open the doors but thankfully no one else was around. The new chair is so much lighter than the old one – I can push it with one hand! Hopefully I will be able to self-propel this a lot more easily.

This afternoon I went and got my hair cut and coloured at Bad Apple – we’re calling this one “Battenberg”. I always love going there, because the team are all so lovely. They remember you as a person, not just a haircut, and they’re just brilliant at what they do. Michaela and James are the ultimate team.

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The 23rd of March.

Well I think I am done with all this computer business. I’m sure there are more jobs I could find but I will not be doing them right now.

So today I’ve pretty much just been finishing off sorting out iPhoto. I did some blog updating and ordered Mommy’s Mother’s Day present.

I promise this will get more interesting again now I’ve finished all the computer stuff.

The 24th of March.

A much more interesting day! It began well with news from Heidi that a company she works for, The Real Adventure, have selected Anthony Nolan as their charity of the year after she made a pitch about them/me because she is a fabulous lady and I love her dearly.

It was nice not to spend my morning staring at a computer screen, but instead to leisurely drink my coffee and read a bit more of Trouble in Mind.

Danny, the new personal trainer came at one, and we spent about an hour working out and talking. We were both surprised by the strength I’ve retained, even though I haven’t been working out regularly since July. My core is still impressive – I was able to do the plank for 46 seconds which I believe is quite good. My legs are what let me down so I really need to focus on them.

He only left at just after two, so I was pretty hungry (got to start keeping a food diary again, blah) so I had some lunch and caught up with the ridiculousness of TOWIE. I also had a delightful surprise in a moment in which some junk from my lungs decided to surface and I had to cough it up. My favourite.

I am tired but it’s good.  Danny doesn’t think it will take long to get me back to where I was and I hope that’s the case because I can’t wait to feel strong again.

The 21st of March.

I do not think my day could have been more mundane. I got up at nine and came downstairs to find Mommy trying to register the washing machine online, but it was all proving rather more stressful that imagined, then Grandma rang and was stressed, and when they hung up, Mommy cried FUCKING HELL and burst into tears and it was so horrible. I jumped onto her lap (not literally, but I sat on her knee) and just held her and gave her tissues. She doesn’t ask for help and I can’t stand that she lets these things build up. She is too special to be sad.

When everything was better, I thought it might be fun (read: necessary) to organise all the music I have across all platforms. So I’ve spent my day with my good friends, the Duplicate Detective and Captain iTunes. What a joy.

To break up the day, we had a visit from a district nurse to flush my line, and I had a chat on the phone with a chap called Danny who may become my new personal trainer if our meeting on Monday goes well!

Tomorrow is photos. Sigh!

The 22nd of March.

Ugh, another day of staring at a screen. But now iPhoto is basically sorted which is rather pleasing. Now I think just have to organise my backup drives and I’ll be done. I think. I hope.

I did read the weekend paper too, but really that has been the extent of my activity today.

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The 19th of March.

Much more successful day. I slept all night, got up at eight and came downstairs to have my breakfast and start the backup of the laptop, before getting Mommy to wash my hair. I was (optimistically, I admit) hoping it might be mostly done by the time I got back downstairs. In actual fact, it didn’t finish until some time mid-afternoon, when I was then able to move on to the next stage! Still not quite finished, but a lot more progress has been made.

I chased the nasty black and white cat out of the garden this morning after I noticed Oscar lying very flat on the bridge and staring at a spot I couldn’t see. I opened the back door, started to walk towards him and I saw the evil cat climbing up and over the fence. Prick. I coaxed Oscar back inside and we had a little hug.

Tomorrow is Mommy’s Harrods birthday treat! Such fun.

The 20th of March.

Mommy birthday trip day! The trains were not fun but the time in Harrods was lovely.

Our train down was delayed so we arrived in London an hour later than planned, but we still got to Harrods in time for our one o’clock reservation. Mommy had the Georgian blend and I had the Assam Gold. Then all the foods came! A lobster and prawn mousse in a brioche bun, and finger sandwiches of beef and onion marmalade, smoked salmon and truffle, egg mayonnaise, and my first ever cucumber sandwich. It was an interesting texture experience. Then we each ate our plain scones (we brought the sultana scones home – they were so massive!), then cakes! We decided to eat the fragile ones and bring the more robust ones home, so we ate the teeny weeny lemon meringue tarts and the millefeuille, and we brought home the chocolate hazelnut delices, the raspberry macarons, and the pieces of fruit cake.

We didn’t get Mommy’s present because we decided there wasn’t time, so we looked at the ridiculously expensive toys, then we went to the food halls. I bought some of Mommy’s tea, some chocolate Dorotea biscuits, and some William Curley chocolates. Then there wasn’t much time before we had to go back to Euston!

We were on a London Midland service back (never doing that again), and Daddy picked us up and it is warm sleepy bed time.

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The 17th of March.

I had another less than brilliant sleep, and I’m still clearing my throat/coughing a fair bit, which is indicative of RSV (for me, anyway). RSV is the evil viral chest infection that makes it difficult to even eat because eating takes up breathing time, and the only treatment is a poisonous nebuliser (seriously, I have to be in a negative pressure cubicle which the air gets cycled through, nobody can be in the room while I have it for the two and half hours three times a day, and they put a big red sign on the door saying POISON with a skull and crossbones, no word of a lie), and that only alleviates symptoms a bit; it doesn’t even treat the virus. I really hope I don’t have it again.

This morning I did some blog-updating, then went to back up my phone and discovered that I’ve literally run out of space on my laptop, so Mommy and I spent the rest of the morning debating solutions. After she’d been out and returned from seeing Grandma (no progress with the food situation – it’s back to normal i.e. good, but none of the relevant people were available to talk to today), we left for GvHD clinic early so we could stop in town for me to get the storage solution.

At clinic, I met a new doctor who’s doing research into GvHD and chimerism, and seeing as I’ve had nearly all the forms of GvH, and chimerism is how they initially discovered that the stem cells had going on their little jolly to the bone marrow and set up there, my case is pretty pertinent to her! Thankfully nobody wanted any bloods (my bruise from last month’s clinic still there) so we just went to pharmacy and then straight home.

We were supposed to have leftover pork from Sunday for tea tonight, but Oscar managed to get it off the top of the fridge (this involves jumping up onto the window seat, then up onto the work surface, across the cooker, then up to the top of the fridge) and stick his face in it! Of course he couldn’t eat it because it was cut into big pieces which he can’t tear apart anymore, so not only was he left without, but so were we! So we had these sausages from Heck instead and they were delicious. Not too spicy for me which is always a worry but a bonus when my mouth copes.

Oh and I am officially off steroids now! Come on, face.

The 18th of March.

Oh, it’s been a frustrating day. I had approximately two hours of sleep, and have been awake since approximately half past one this morning. I have then spent my entire day staring at a computer screen, waiting for files to transfer, only to find at about half past five that it hadn’t done any of it.

So I’m doing it again in a much slower and more laboured fashion this evening. It’s a good thing I haven’t got anything on tomorrow as I’m going to be going through the whole saga again.

Becky came over after school for more pupil chat, and she’s given up chocolate for a week which if she completes, will be very impressive! She is the chocolate monster (but also works it off by being super-active).

I had a minor crying attack at Daddy this evening because he couldn’t understand my current attitude to money and I just said “Well when you’re terminally ill, you can lecture me about spending money I have in the present because I’m not saving for a future”! It was a little bit melodramatic. He says he doesn’t think of me as being terminally ill. Well I wish I had that luxury.

The 15th of March.

I feel a bit rubbish tonight. I am hoping I’m just tired ’cause if I’m not, then I’m sick. I’m having a hard time taking deep breaths and I keep coughing. I didn’t have a great sleep so I’ll have an early night tonight.

Well my day has been spent mainly being stressed about food. I gained weight again yesterday and I literally cannot cope. I fucking hate my brain at times like this because it’s a downward spiral and I am unable to think about anything else.

I had a break from it this afternoon when I watched the Veronica Mars movie. It’s pretty perfect. Every nostalgic moment made me squeal with joy and Mommy was laughing at my gasps towards the end. I won’t spoil it, but if you’re a fan, you’ll be happy. Well I am.

Mommy and I just had a great chat about how we would like Justin Bieber to be horribly maimed. I like the idea of one of his dancers being a ninja and taking him out mid-concert.

The 16th of March.

I think I am okay. Just tired. I had a better sleep, and I haven’t coughed as much today so I must have just been having a little fit last night.

My Sunday morning routine was restored this week with the return of Sunday Brunch. So I watched that with my breakfast and coffee. This afternoon, I started reading Jeffery Deaver’s new set of short stories, Trouble in Mind (The Goldfinch has been put to one side for now).

I spent a little bit of time down the garden, taking pictures of the frogs. There are so many frogs! All climbing on top of each other. I do feel a bit sorry for the lady frogs.

GvHD clinic tomorrow. I would like a break from hospital appointments please.

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