New consultants, passing tests, and giant cake

3 minute read time.

Hello my lovelies! Hope the full moon didn't adversely affect too many of you??

 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 snack available all day, 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...

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..........

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Anonymous
  • FormerMember
    FormerMember

    PS I will need all my childhood immunisations again after a few months too!

    LM, I KNOW, what am I like?? All this just to get out of visiting you! Shocking tactics :D

    Yay to typing via drug induced madness!

    Colin - I think LM has more dastardly plans in mid haha!

    Xxxxxxxxxxxxxxxxxxxxx

  • FormerMember
    FormerMember

    Think hospikal will have more dastardly things for you to do then LM could dream up.......I had to fill in poo chart AND........weigh poo, wee and vomit! Now can anything be more disgusting then that!!!

    I also had my older son setting spider traps...

    Had conversations with my hubby....when he wasn't there

    Rang my younger son at work saying I was returning his call....when he hadn't called

    Sent any number of nonsense texts

    What Larks Ems (Been watching the David Lean Great Expectations this week)

    xxxxxxxx

    PS Childhood Immunisations is also a new one. I have to have the flu jab each year...they just like stabbing us!

  • FormerMember
    FormerMember

    Hi Ems

    Haven't been around for a week or so, so I am just catching up with what everyone is up to!

    Yes it will be hard but you are a tough cookie and when you come out the other side things are going to be much better.

    Sending you the biggest squidgy hugs and all my love.

    Nin xxxxx

  • FormerMember
    FormerMember

    Sorry, I missed your blog Ems, I think alls been said so I'd just like to say I think you are one amazing lady and all the very best wishes for an onwards and upwards to the light at the end of that tunnel. Hurray for cures and better days to come.

    ((((((((((hug))))))))))) and much love

    Jan xxxxxxxxxxxxxxxxxxxxx