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

    Hi Ems,

    Gosh, bloody hell, wow, and so many other emotions reading your post! I have just read the reply you got from Louise, and what better words of experience and hope could you ask for Ems!

    I think it is no point me beating about the bush, it seems like you will go through hell for a while, but whilst a cure is strong possibilty then I know you will focus on the finish line and fight all the way.  It is wonderful that you have got a chance of cure, and can look forward to lollipops!

    I'll be behind you all the way, and wish you all the luck in the world.

    Big hugs and special tight lines.

    p.s. My ears have got very hairy this week, must have been the full moon!

    Tim xxx

  • FormerMember
    FormerMember

    Dear Ems,

    I was close to tears when I'd finished reading your blog, and even closer when I'd read Stinker's, and no I AM NOT GOING TO SAY HOW BRAVE YOU BOTH ARE because that would be tilting the head but privately I think you are both terrific ladies SO THERE.

    Your cakes sound terrific and ooohhh raspberry jam filling, how wonderfully decadent! I've made two loaves this week, first ever, from a Dan Lepard (Guardian) recipe for sourdough, and I'm so pleased with myself it's embarrassing. But cake and coffee with a good pal surpasses even that, go girl, enjoy.

    Dentist, yuk, me too next Wednesday, plus hygienist, then presumably another root extraction as another crown broke off. More expense & pain! One thing I really drummed into my daughter was to look after her teeth. I always took her to the dentist regularly - result, beautiful gnashers. Mine were only attended to if a letter from the school dental service demanded it - result ... well, it's obvious innit! But You've sailed through all your horrid tests etc. so far, no doubt this one will be a doddle too

    Hear hear to Cruton's C word, it's what we all want but especially for you and your girls right now. Stinker's given you a brilliant start - 3 years and still fizzing with life! so courage, mon brave, as they say over there.

    Will stop now before I get silly.

    Hive & lugs,

    Annie xxx 

  • Ask for caphosol it works sure I have mentioned it before for mouth care

    http://www.dailymail.co.uk/health/article-1246082/New-mouthwash-eases-discomfort-chemotherapy-preventing-treating-mouth-throat-ulcers.html

    have they given you a date yet ?  the feeding tube is a new one but if it helps then good, sore bum syndrome seems to go with the treatment and varies just don't try to beat my record or the one that Paul set after his sct.

    you will get through this and cure sounds so much better than remission. with the omeprazol if you start to get achy joints especially hands its probably due to them.

    good luck not long before you will be having a party to celebrate or at least tea and cake ha ha

    john 

  • Ask for caphosol it works sure I have mentioned it before for mouth care

    http://www.dailymail.co.uk/health/article-1246082/New-mouthwash-eases-discomfort-chemotherapy-preventing-treating-mouth-throat-ulcers.html

    have they given you a date yet ?  the feeding tube is a new one but if it helps then good, sore bum syndrome seems to go with the treatment and varies just don't try to beat my record or the one that Paul set after his sct.

    you will get through this and cure sounds so much better than remission. with the omeprazol if you start to get achy joints especially hands its probably due to them.

    good luck not long before you will be having a party to celebrate or at least tea and cake ha ha

    john 

  • FormerMember
    FormerMember

    Hi Ems

    I wish you everything everyone else has said and a million times more, big hugs and lots of love

    Jackie xxxxxxxxxxxxx