Thursday 9 February 2012

New consultants and passing tests

Saw GP Monday, to both ask for painkillers for Megz, and to have my ''fitnote'' extended. Also the fibromyalgia consultant's notes had arrived, so I had my repeat prescription, plus another one for a pill to stp my tummy reacting to frequent ibuprofen, and another; so far with my fibrowhassit, I have not wanted to take the pill they offer for better sleep (not falling into a deep enough sleep is something that effects fibro-folk) - but with my sleep patterns all over the place lately, I agreed to give it a go. And they're only 10mg but I have been out like a light the last two nights. This evening I didn't take it until very late hence me typing at 1.30am!! - this is also because of the overload of information yesterday at the Heath!!!!!

Heath: met Keith from Trinidad briefly - brilliant bloke! Then his fellow doc, also called Emma, from Ireland, and we had A Long Talk. Apparently it was called our 'counselling' session, but really it was her giving me a barrage of sometimes reassuring and sometimes scary information.
I can't recall all of it, but..
3 weeks inside is most likely. A feeding tube inserted down through nose in case I am one of those whose mouth and throat gets too sore to eat...some people manage a few things, others don't. Most will also get the runs - the runs and the sore mouth due to Mucositis - oh joy. 2 visitors are allowed in but they recommend not having more than 8 during whole stay due to feeling crap; under 12's not allowed as I mentioned before (is it a bad habit to repeat things to yourself??).

If you can't manage the hospital food you have access to an ASK menu when possible, and ice lollies to suck on , plus there's snacks available all day if you can manage to eat but don't want an actual meal, and you can have supplement drinks if can't manage anything solid.

I was given a huge pack to read through, spent about an hour and a half in the doc's office, then an hour waiting for bloods (where I met 2 post-transplant people, one was bone marrow), then they took about 12 tubes of blood from me in one go!

The aim is not to be in remission, but to cure. Yay!! 4 out of 5 people are cured. So, a few weeks of feeling shite, then seeing if it works, which I am intending it to ;-)
I veer between wanting to sob at the thought of all that hard work, and wanting it to be sorted now! This is Big Time Stuff, and I know I'm made of Strong Stuff; just all a lot to take in, plus form to fill in and boxes to tick and sitting blinking at doc one minute then thinking of questions the next... Also, after a few months post-transplant, I will need to have all my childhood immunisations again!!

Today was bloods, then an echogramm/echograph (??) and ECG and lung function tests - all clear, passed with flying colours , then back down to WIndsor suite for the Rituximab, and Jo very kindly dropped me off and picked me up :)) Also been trying to fill the 24 hour urine sample bottle! Just gotta book the dentist next.
Hah, ''just'' ...... I HATE the dentist. But, it's gotta be done!!

Tomorrow, hand bottle in, have a CT scan, and hopefully Em will not be called into work and we will have our dastardly plan of... cake and coffee haha!
We can have cake, because to day I baked two so that I could layer them with lashings of raspberry jam. YUMMY!

And now for sleeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep

2 comments:

  1. I'll do the dentist part for you :)

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    1. If only I'd read this sooner, I could have spread the jam while Tiina went to the dentist for you! ho ho ho!

      So glad you're getting deeper sleep.... I can't imagine keeping up with your schedule, ((((Em))))! love you.... on to the next...

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