Too indecisive to pick a title…..

So I went quiet again!! I think its because I don’t get as much time by myself as I did in hospital and everything still feels like such an effort. It’s an effort just making decisions on what to do, if not harder than actually doing it!! Deciding whether to go to Peterborough and visit a friend was a right palaver, very glad I made the effort in the end. Generally I have best enjoyed days where I’ve just plodded around the house and just taken the day a it comes. Planning seems to stress me out a bit!!

I’ve also become stupidly forgetful and forget i even wanted to do my blog until it gets to late in the day and I’m too tired……. Example of level of forgetfulness (or lack of concentration?)  Left some vegetables to roast in the oven for nearly 5 hours instead of 45 minutes…. makes the washing up quite hard work. Scarily I couldn’t even smell the charring peppers!

Generally I’ve been well though. Been chilling at my mums with her and my brother during half term and eating far too much food! Trying to build up my activity slowly, walks most days with the dogs unless i know I’m going to be spending a long time on my feet. I baked a carrot cake and made soup on wednesday and you don’t realise how tiring it is just standing around the kitchen all afternoon!!

Hospital wise its been the same old…… twice weekly bloods with one done at kings, all mostly stable although needed a few boosters for my neutrophils over the weeks. Been trying to juggle appointments to get my hickman line taken out at either hospital but this seems too much to organise so I’m stuck with a bit of plastic festering in my collecting bacteria and blood clots as it can’t be used!!!

My CMV virus levels have raised so I’ve had to go on valganciclovir tablets to treat it (which are apparently a right pain to get hold of as I ended up going to london to collect them!! Thank you Grant for collecting!). In healthy people CMV usually isn’t an issue, however in post transplant patients (or immune suppressed patients) I believe it can effect your organs so its important to start treatment asap whilst the levels are low.

Otherwise my only real issue is a spotty and serious itching!! (Can’t get a good picture unforuntately) Its predominantly on my head so I’m mostly wondering round bald as hats/wigs make it itch like crazy. The worst time is when showering as the heat tends to send my skin crazy and make it feel like it crawling!! Think I might have to start wearing mittens to stop me tearing my skin apart. Being referred to a dermatologist to try and work out whats causing it!

Next week I’m getting the full works though….. Bone marrow biopsy, Dermatoogist, Clinic and *fingers crossed* line removed!!

Here are some pictures from the last few weeks:






New wigs (thanks Tannis for the blondes 🙂 ) and baldies!!

One thought on “Too indecisive to pick a title…..

  1. Diana Lockyer

    Well done Emma. You are doing amazingly well. It must be very hard work trying to decide what to do. However, making a carrot cake and soup is fantastic. It takes planning and effort which cannot have been easy. Pete and I do hope that the bone marrow biopsy, dermatology clinic and hopefully hickman line removal goes well this coming week. I am starting to get mildly itchy and it is really awful. You look truly fantastic in ALL your wigs. I personally like the blonde one best. xxxx


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