Monday, 28 September 2015


So I hope yesterday's blog was okay.  I am certainly not trying to offend anyone but I am really nervous about case you didn't gather.

But anyway....I know those that know me, love me and will do the right thing.  Breathe.

So to quickly capture yesterday, I was INCREDIBLY tired and wobbly on my feet.  I hardly slept worrying about all things infectious and my levels continue to drop.  I spent the day typing to friends which was lovely however the Wi-Fi was playing up something fierce (how rude) so I missed calls and was wasting so much time waiting to send stuff (lucky I had time to waste)!  But it was fun - I had about 8 different friends I was chatting with so lots of fun!  Feel free to Messenger me!! :)

Dr F thinks I can expect engraftment at about day 9!  OMG - That's still days away!!!!  No problem.  He sounded happy with everything and the form we are working from goes up to Day 16 so I'm not complaining!  A fellow patient who left last week was up to Day 11... and she's home now and feels it all comes out in the wash.  And if Day 9 is it, that means I'm only looking at about 3.5 days to go!  Then some R&R with fellow patients, an infusion of Rituxlmab and I'm outta here!  WITH NO MS!! 


Day 22 numbers:  Haemoglobin: 88  Leukocytes:  0.19,  Platelets 78.  Still going down although Haemoglobin was up which was a good sign (no infusion necessary)
Day 23 numbers RISING: Haemoglobin: 90, Leukocytes: 0.32; Platelets things have turned overnight!  That's exciting I'm pretty sure!

"Normal" numbers are: Haemoglobin 120-160:  Leukocytes 4-10: and Platelets 150-400.

I took a sleeping tablet last night to try and get over this insomnia.   I had a great (deep) sleep until about 1.30am and then I was bright eyed and bushy tailed again!  Messenging some friends and Piper, reading and getting in another few hours sleep before the 7am infusion.

I feel rested although my legs are still horrifically weak.  But Dr F said this is normal - due to bloods - not MS.

I think I have an ultrasound today to check my heart, liver, lungs are all doing as they should.  I feel really well and alert so's after 3pm thought so maybe I got confused.

My hair has started falling out.  As mentioned before - this is wonderful news for my legs and underarms but no so much my head!  Funnily enough - my eyebrows and lashes remain intact! 

The day has been spent doing very little....I'm trying to save my iPhone and iPad because the charger decided to die (Argh) but I have an Aussie friend who arrived today and she's going to sort me!  Phew!  It works sporadically so I'm v.e.r.y carefully trying to keep something charged!! 

The weather has turned today and everything seems darker.  Very similar to my home town - 26 one day; 13 the next!  Dr F says that's it.  Autumn is here. 

He's happy with how things are going and has popped in a few times today just to give me the 'thumbs up' through the glass!  He laughs at my enthusiasm!  

Food today was provided by the colour beige again.  Semolina for breakie; yoghurt, steward apples and chicken for breakie 2; cauliflower and soup for lunch....I'm gunna hazard a guess as ...buckwheat for dinner (which is foul)!  So could be rice again.

Well seriously - today is a bore.  I feel (really) great but I just have no news to tell you.  Spoke with Andy and Pipes, spoke with Mum and Dad, spoke with fellow patient....sent messages to a tonne of you....Another day closer to home.  For those that know me - remember I'm good for proofreading or anything like that!!

I might have to succumb to reading or putting on a movie....tomorrow I might do a Montague of characters for you...depends how stir crazy I am.  I can be a hard-core romper stomper; a buddist monk; a chef; an ant hill, a pimple...the options are endless!!


  1. Mary, you are doing an amazing job with both your healing and your writing. The prayers are still rolling your way. Think of you often.
    Sonia B

  2. Mary, you are doing an amazing job with both your healing and your writing. The prayers are still rolling your way. Think of you often.
    Sonia B