Tuesday, 26 October 2010

Horses and Zebras

I've been meaning to write a blog for the past week but really not been in the best mood. I didn't really want to write anything whilst incredibly grumpy! I am still very sore and yesterday was my first venture outside since getting home - I didn't manage to walk very far at all and was pretty annoyed with myself. It's nearly three weeks since my operation and I thought by now I would've felt more normal... Guess not!

So, we saw the prof last Monday afternoon and he basically confirmed what he had told us on Friday night - I will need at least one round of the high dose chemotherapy. As this chemo kills off all your bone marrow, we will need to use my cells taken from the Aepherisis. However, these cells are infected - typical! In order to 'activate' (unsure what other word to use) the bone marrow cells, you need to have a round of chemo so this either means I will need a random round of chemo to bring them to the surface or they will take them directly from my bone marrow (OUCH!). To be honest, I'm gutted about this. I was really hoping that the operation would be the end of it but now the problem is, we just don't know when this will end. I really hate the uncertainty of the situation, I just wish it was more straightforward. On Monday they also removed the 33 staples from my tummy. I was told this wouldn't be sore... Yeah right! Turns out only the middle of my stomach was numb so I felt most of the staples coming out. It's fair to say I was not happy with this! Dad flew home on Monday night and Mum and I came back on Tuesday. It was great to be home and be in my own bed. I forgot how annoying our cat Twinkle is though, I didn't miss her. I also had LOADS of Masterchef Australia to catch up on so that has kept me busy.

I found it strange that most of my hair, eyelashes and eyebrows started to fall out when we came to London. It was really frustrating me so I asked Ruth to come over and shave it. It took longer than we thought but Ruth being the perfectionist that she is, did a great job. I feel a lot better without the wispy hair but I do look a bit like an alien. Also, my head is constantly freezing! I do not know how Ally Meek coped being bald for so long.

I was supposed to have an appointment at the Beatson this afternoon but felt awful, so Mum went without me. It was to discuss my further treatment and whether it would be carried out in the Beatson or London. It looks like the decision is up to us, which is making me quite confused. There seems to be quite a few contradictions with the treatments in the different places so I am unsure how we will choose. We have a call with the Prof tomorrow so hopefully more will become clear then.

I was on the BBC News website the other day, and there was an article about a young girl who has cystic fibrosis. She also has a blog which I had a read most of, and a lot of what she said was very similar to how I feel. One of her blog posts really stood out and identified a lot of the emotions I have felt throughout this. If you want to have a read here it is... http://tor-pastthepointofnoreturn.blogspot.com/2010/08/cathartic.html - I think it was very brave of her to put this down for people to read (even complete strangers like me) as there are times I have felt similar, but have not wanted to talk about it. I know we are in different situations, but a lot of what she said has resonated with me.

My sleep pattern has been a bit strange lately so I'm going to try and have an early night tonight. I am aiming to be in bed for 10... But that never happens. Good night all.


  1. me and ally meek say we love you and goodnight little pie.

    Ally also suggest backwards baseball caps could be the way forward for warmth.

    how sad. 90's loser.

    LOVE YOU xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  2. I'll definitely second those sentiments... you could totally rock a 90's backwards baseball cap!!

    It's morning here so I hope you got some good kip last night or indeed are still sleeping like a wee cherub!

    Love you little lady xxxxxxxxxxxxxxxx