Being at home – the world outside.

After 31 days in hospital the simple act of walking outside and into fresh air gives me so much elation. And a fair degree of trepidation.

I’ve been cosseted in a world of infection minimisation. There have been professionals on hand 24/7 to respond to every random question or worry I’ve wanted to discuss about my condition, symptoms or side effects. Now I’m responsible for myself. Armed with loads of sensible and practical advice I still feel a bit like a new parent when they are handed baby……oh shit…..what if I break it!

I go for coffee and out for dinner…..I need to make the call on what’s safe to eat and drink and how busy, is too busy, in a cafe. I turn into Mrs “hand-gel” which makes me think I must have been a manky thing before. I am washing my hands more in a day now than I ever did in a week! And I’m having to avoid the easy way into town on the number 23 bus…….because buses are UNCLEAN!!!!

However despite all of these new wee elements that I’m having to work into my routine, it is wonderful to be out. Free. At home. I can eat and drink when I want. Lie in if I want to. Mooch about to my hearts content. Potter in my lovely new kitchen which was only finished a couple of weeks before all this merrygoround began. 

I’m enjoying the wee stuff. A walk in the Meadows. Going out alone and doing exactly what I want to do. A quick look around Harvey Nics. Normal stuff. Stuff that I took for granted. Until my life got interrupted.

Until something catastrophic occurs in your life I doubt that any of us would have the capacity to get our heads around just the level of interruption that is caused. We are happily on our wee treadmills of going to to work, going out and enjoying our life with our friends. We set our schedules. Make our own choices about what we do and when.

Since my diagnosis, despite my will to hang onto ownership of the bits I can control, I’m finding it a challenge to let the NHS machine take over so much of my every day life. It’s helping to fix me, but as I’ve said before, there are plenty of bits of the NHS that need a good fixing. Perhaps if I felt that the ‘system’ was more fit for purpose, I’d be more relaxed about letting go.

Until I do feel that way, I will be holding onto the control I’ve got and won’t be shy about voicing my opinion if I feel that some element of my care could be working better. 

I’ve never been able to bite my tongue – having leukaemia isn’t going to change that.


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