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..........

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Anonymous
  • FormerMember
    FormerMember

    Thanks Annie and Tim, for your kind words. It is always difficult to know how much information to give out, and I'm just glad that Ems has had a more straightforward journey to combatting this disease (apart from silly misdiagnosis), and hope that it will be so in this case!

    Oh, wonder if you will have the joy of filling in a poo chart Ems!

    xxxxx

  • FormerMember
    FormerMember

    *wipes eyes*

    Some dust or something got in my eye ....

    My goodness me I am bowled over by the absolutely solid, sincere, and super support that I have from you gorgeous lot!!!!!!!!!!!!!!!!!!!!!!!!!

    You're right, it's a damn hard slog, but how very worth it if I'm going to be one of those 4 out of 5 eh??

    THANK YOU THANK YOU THANK YOU

    I'm off to sort out this dust .....

  • FormerMember
    FormerMember

    *hands you a tissue*

    xxxxx

  • FormerMember
    FormerMember

    DID SOMEONE MENTION POO CHARTS??? OH I LOVE A GOOD BRISTOL POO CHART!

    nuff soppiness going on here.. lets get down to the real business!

    OK, Ems.... enough is enough... I know jelly and icecream and lollies are fun to eat, and I know I am cool and everyone wants to shit themselves like wot I do, and I know you were trying to find an excuse not to visit me cos I will smell of poo ;) BUT enough is enough.

    You could just pretend to be a kid and go to one of Deri's parties for the jelly and icecream and lets face it, shitting yourself is way too cool for you to ever do long term, so don't even bother getting going for the odd week or two, and you could have just said you were washing your hair, oh hang on... err what did I say oh yeah, having your nails done or somink like that..... I wouldn't have minded....

    Trust you to go to extreme measures eh? Honestly! So next time you want to get out of something, just ask me for an excuse eh? I've got millions of them that involve nice stuff like cake and that....

    Get your laptop willy sorted and we can type silliness to eachother and possibly drug induced madness too hahaaaa.

    LOVE YOU

    xxxxx

  • FormerMember
    FormerMember

    Be very careful here Ems. What LM is suggesting can have you laughing when you don't much feel like it!

    Big hugs to two very special ladies!

    Odin xxxxxx