DAY 25 - DOOR OPEN!

To save you all a bit of time - the beginning of this is EXACTLY what I wrote on my Facebook page! 

Dr F BOUNCED in this morning and went STRAIGHT to figures! (We share this joy thing). Numbers written straight away show engraftment has taken place! New Stemmies are off to work on a new immune system - little sweethearts!!!
Haemoglobin (normal is 120-160): Mary is 103...nearly.
Platelets (normal is 150-400): Mary is 220 - NORMAL!
Leukocytes (normal is 4-10): Mary is 3.8 (compared to 0.85 yesterday)!!
The door has been open!!! I am allowed in a very small, controlled environment, with all of us in masks, etc for the afternoon!
No more Vodka baths, normal toothpaste and soap etc! Yabba-Dabba-Do !!
Naturally my immune system still shot to pieces BUT...this engraftment has taken a giant leap in the right direction!
I was so unbelievably grateful... I started crying!
He was so happy for my joy!
Now if only my legs would work....they are so so shaky! 10 times worse with MS. No one seems surprised.
And now - I'd better find a cap or scarf post haste!
Yes - even my clothes are retuned today!!!
I still have a good solid week of recovery here and then I'm home !!
I feel blessed beyond compare, so grateful, strengthened, my faith is off the rictor scale, my family and friends are insane (no - I mean - really) - nah - they are just my WORLD and this Team Russia is so far beyond phenomenal it's not funny....GRATITUDE OVERLOAD!

Unfortunately - my unbridled enthusiasm for 'the great outdoors' (aka lounge 10 feet away) was curbed a bit with meals, infusions and waiting for my luggage to return, but by early afternoon, I was out hanging on the lounge with a NZ lady, Norwegian lady, Canadian man, American Carer and 'my' Aussie Friend!  Talk about BLISS!

It certainly shows you how quick your time here REALLY goes because I remember being EXACTLY the person who had just finished tests and I felt SO BEHIND everyone else who had just had transplants or were out of Isolation! 

Bearing this in mind - I really tried to be as helpful as I could and explain that it really does move quickly; I found isolation very therapeutic and no bother whatsoever - was calm and happy each and every day; I describe my Chemo experience but was quick to explain that every experience has been different), talked about Vlad the Neck Impaler and so on!  They all at different stages already too but they will share the journey which is GOLD.

I think I'll still be able to spend some time with them which be lovely but I will miss Transplant Birthdays because Hooo-laaa!  I'm out on 7 October!!  I week to go baby!  I week to recuperate, learn, be a support to the others, rest, contemplate, etc.

Oh yeah - you may have seen - hair fall out is a GO.  I WAS pulling it out until another a fellow HSCT said OH NO - just let it fall or you'll do root damage!  GREAT!  I look like....I dunno a ferret who got himself into a tussle.  - HAT ON today :)

I'm off to have a REAL SHOWER WITH SOAP and a Toothbrush and Toothpaste so that'll be heavenly!! 

As I mentioned - legs are like Jelly so work outs have commenced - just very low key to TRY to get some strength! I'm gunna walk out of here better than I came in that's damn straight (...and then take FULL ADVANTAGE OF WHEELCHAIR ASSISTANCE THROUGH THE  AIRPORTS)!!!  Hey - I'm only human!

Joyous Overloadus!  OUT.

DAY 24 - CLEAN I SEE A LIGHT???/

So the days are slowly moving along and each day is a day closer to release .. and HOME,

Today begun the same as before.  Awake WAY too early, infusion at 7am, find things to fill the day....

Today I tried to rest a fair bit...read on the bed...looked at Ezibuy catalogues online and did a bit of Christmas shopping.   I also organised accommodation for my first night in Adelaide before I get to return home.  Spoke with Mum, my little sister and Andy as my hair started falling out around me....sigh.

All other hair has left or is in the process of leaving.  Strangely (and thank God) my eyelashes and eyebrows remain intact.  Curious and Curiouser....

Dr F came to see me mid-morning with my blood results.  We are both in good moods and he's just a card.  He took my blood pressure, had a chat, listen to my heart...chat....I said "SOOoooooo - what are our numbers????"  He laughed, pretended to drop the paper, couldn't find his pen, mucked around with the blood pressure machine some more and then filled in numbers for Platelets (185) and Haemoglobin (99) ...both important buy Leukocytes is what I'm interested in.  He started laughing and I drummed on the table....commenting that Russian's are NOT funny.  He disagreed completely.

What an anti-climax!  My numbers was still low 0.85 (remember normal is 4-10) but had gone up from 0.32 yesterday so that's significant.

He explained that it is rising well and as such, it could be possible for me to sit in the lounge tomorrow and then maybe outside on Thursday!  He said it is not uncommon for numbers to now jump to over 2 or 3 overnight now that engraftment is occurring!!

Woop Woop! 
So all going to plan - I may be able to sit out in the lounge tomorrow arvy!  Small victory but how exciting all the same!
There are other Aussies, a Kiwi, Canadian, Americans, Norwegian...plus of course Russians so how exciting! 

So now it's only 3.40 but I'm just going to try chill for the day.....I watched a movie yesterday arvy so will do the same.  Easily kills a couple of hours !

So hopefully tomorrow I can report from out of the dog house!!  Not that it's been bad by any means but it'll be so nice to listen and chat with others rather than sing badly to myself!!

DAY 23 (& A BIT OF DAY 22) - NUMBERS AND STUFF

So I hope yesterday's blog was okay.  I am certainly not trying to offend anyone but I am really nervous about infection...in 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 amazing....so 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!! 

SWEET. .

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 132....so 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 hopefully....it'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!!

DAY 22 - IMMUNE SYSTEM

Hi all.  This blog will a little different because....well, let's be honest....today has pretty much been a carbon copy of yesterday except that rather than writing in Russian, I've been writing in Messenger. 

The Wi-Fi is playing up (how rude) but I'll have a bash at my update.

I may update again later depending on boredom levels!!

So anyway - MY (NON-EXISTENT) IMMUNE SYSTEM

I was up 1/2 the night worrying about this as I had things racing through my head after 'chatting' with a fellow HSCTer.   I was talking about visitors that we have coming, and dogs, and travel etc.  We were discussing what 'others can be carrying unbeknownst to them' which in fact can be lethal for us. 

All of you have (I suspect) strong immune systems and/or have been vaccinated to protect you from all sorts of things.  BUT this doesn't mean that you can't be a carrier and thus, putting a little fledging like me, at risk.

I have friends and family who are travelling to remote areas and 3rd world places in the holidays and, to be honest, this is the major thing scares the bejesus out of me. 

Kids get sick and Piper will be around kids....

We all have animals. 

So a couple of rules that I think I can safety express here:

1) No flowers.  No dust/pollen etc allowed in house...whimper.  Chocolate and coffee and fine though.
2) If you have been around sick people or have a sniffle...PLEASE don't visit.
3) Sick kids?  Yours or others - PLEASE don't visit.
4) If you have been around communities that carry sickness (3rd world; hospitals; remote communities and the like), even if you feel fit as a Malley Bull, please visit another time - because YOUR immune system is strong while mine is in it's infancy.  You could be carrying something that is critical for me - but harmless to you.
5) If you have pets/animals that may have been subject to same - either at a dog park, in caravan parks, around sick kids or have been around other dogs...can they please not visit (nor visit with our dog).  Our poor puss has been relegated outside too as cats are renowned for being filthy!  Poor Puss!
5a) If you have been handling animals, also bear this in mind.  A house dog might be fine but one that has been sociable may have picked up something from his/her mate...again, unbeknownst to you but no good for me.  Basil has had all his shots and needs to avoid other dogs too....which sucks with the new dog park in town!!
6) Hand sanitiser is key in our house...as you enter, after the loo, using the iPad, etc! 
7) Shoes off in the house..for Andy's sake as much as mine!  We have a lot of floor space to keep clean!
8) I can't eat fresh fruit or veg (salad) - can you believe it - and everything needs to be microwaved to kill the bacteria.
9) No need to come over to clean my house or cook me meals.  I have to sterilise everything so I may as well do myself .... and I have 24 hours to kill each day.  I'm sure Mum and my sisters will lend a hand at times - but no chemicals etc in house and I have a great cleaning system (Norwex) and food is going to be a learning curb for us all.  Although I don't think we'd turn away a good lasagne, roast or casserole! (coming into summer - sheesh)!
9) Andy and Pipes will probably like/need a hug every now and then.  They've been amazing.   But again - only if you're not sick!
10)  Trust me!  I am NOT trying to keep you away but I am quite nervous about the 'no-immune' system especially in the early days. 

I feel a bit of a bully but I'd rather put it out there and be safe rather than sorry.  I've heard of several patients that have ended up in critical condition on their return, just because they thought doing 1 little thing would be okay.   I can think of 2 that ended up in hospital for quite a prolonged time after only 1 week home.

I'm nervous about the flight (although I'm told business class is lush) - I'm nervous about eating on the plane - I'm nervous about animals and sick kids from school - I'm nervous about lots of my friends and family who have been travelling in Central Australia, Bali, Thailand.

I just want to hug and kiss my family when I get home and I don't know how I'm not going to do that when I see Pipes, Andy, Mum and Dad....but we all know the rules....

Thank you in advance. 
Anyone that knows me, please feel free to ask me questions. 

DAY 21 - BUELLER....BUELLER....

I have come to the (not really surprising) conclusion that I am NOT designed for being still..resting....etc.  I don't really get "what do you DO to rest"?  Sleep?  Lay on the bed?  Like what actually should I be DOING?? 

I had my morning (7am today) infusion and was up.  I made myself a coffee (thanks to fellow patient Vanessa who left her Nescafe Gold!) and read, caught up on facebook and played card games til breakfast (9am).  That's "REST" right??

After breakie I tidied myself up (which - without a hair and makeup routine, is a 2 minute ordeal of trying to avoid the mirror while putting on face cream)!!  It's fine - small things amuse me.  I put moisture on my legs, my cuticles, lips...repeat.  Ho hum! 

My hair is very slowly starting to fall out .  I was talking to mum yesterday and brushing my head as all these little hairs were falling on the table....this is NOT a bad thing where my legs and underarms are concerned!! 

My levels for today continue to drop.  Dr F expects a turn around in the next 2 or 3 days but it's different for everyone so who knows?!  Haemoglobin 81 (if it goes below 80 I'll need a transfusion which is not uncommon); Leukocytes 0.2; Platelets; 83.  All fine apparently.  My temperature continues to play funny buggers - 1 minute it's fine at 36.8, the next it hits 37.3 (when the nurses leave, I can't help but continue to play with)...They tested my blood for infections last night and all was clear so no need to worry.  Between you and me - I think it's because I have seriously hollow underarm's and the temperature stick is not reading my temperature correctly....but try explaining that in Russian!  I feel fine and no-one is concerned so we all roll with it.

Spoke with mum and dad and then, for a lot of today I wrote thank you letters to the multitude of staff here that have made my stay so memorable.  This includes of course Dr Fedorendo, Anastasia, Olga, Eirena, Valva, Nicolai and the entire team. 

I wrote a note to each of them in Russian and then in English....it took a LONG time.   But - I feel good for having had a go!  Who knows what I've really said to them ...but word translator seemed to get the gist of what I was trying to say - so we'll trust in the system !  Words like "Enormous Gratitude" featured strongly!! :)

I downloaded some more books, podcasts, music....cruised around ASOS.com and eBay and so on.  Pandora doesn't work in Russia but a girlfriend told me about Guvera and that's worked a treat so "happy Mary".  Lots (all) the instructions are in Russian but I worked out enough to have tunes all day and just singing and having noise makes the room better!

And suddenly - here we are at dinner time again so another day is ticked off.  I've attempted porridge with buckwheat for dinner but think I'm gunna have to find something else...rice...protein bar...freddo frogs ... I dunno - we'll sort something! 

Off for my vodka sponge bath and an attempt at exercises (although I am so weak that it's quite embarrassing - good thing I'm in isolation I guess)!  Weak = "C'mon Mary you MUST do them to gain some sort of strength"...so I'm having a go!  As my levels increase it will be easier I'm sure and the app I'm doing is a big 7 mins so feel like it's okay to have a bash at. 

Righto - Russia HSCT HQ Division ISO #328 out.

DAY 20 - GROUNDHOG DAY

Well, because the mornings start so early....the days go for a VERY long time!  Plus last night I was messenging a girlfriend on the Gold Coast and then Piper got online around midnight my time....OOopsy.

Anyway - Olga (my favourite nurse) was here last night and she popped in at 6.30am (!!) for infusion 1 for the day....all fine and normal/expected now.  Mind you - it's very hard to go back to sleep once you've had 1-2 litres of fluids pumped through your body....so awake I was.

Lucky for me - I had been given a 'job' overnight (with a couple more potential 'jobs' lined up) so I got to work on my VERY SLOW computer doing this.  It was super satisfying.  However I feel I was done by breakie #2...Oops. 

I do have 'real work' that I can do but the connection is so slow here that it can wait until I'm back in Australia and homebound.

I can't believe I have only about 12 days left til I fly home!!  That's NOTHING!!

My levels today are still going down.  Dr F expects they'll turn around Monday....fingers crossed.  Info for the experts is:  Haemoglobin: 86  Leucolytes: 0.24  Platelets 90.   All fine I'm told.  My temperature is playing up a little and this arvy crept up to 37.1 but after a lay down and drink it was back to 36.8 so not sure what's up with that.  They're monitoring all the time (as am I almost every hour) so it's all good.  It'll just mean an infusion of antibiotics I think if it goes over 37.5.

So this afternoon was spent doing....do you know what - I have no idea.  I was on the computer for a bit....played some brain teaser games...read for a bit....talked to Mum, Andy and Piper and here we are at dinner time!  Sweet.  Another day done.

I'm bypassing tonight's dinner for a stash of fried rice a fellow patient left me...I just can't come at the buckwheat today....

So...other than BORED ... I'm good.  Still happy, supported, comfortable, etc.  I'm quite weak today but Dr F says that's because of the dropping Leukocytes so all good. 

Time for dinner, cuppa, alcohol wash, gargle, bed.   Let's see where tomorrow takes us!

Sorry - boring day leads to boring post.....

DAY 19 - STARING AT THE WALLS

I had a perfectly reasonable evening after spending yesterday afternoon working on speech for my little sis.  I had my ...100% vodka alcohol wash...gargled....watched a movie....read....slept quite well.

7.30am is the first infusion for the day.  The day is broken up by the nurse's visits, 'food' deliveries; Dr F visit, Anastasia popping her head in, etc.  All the girls say "Good morning" but it doesn't go much further than that, other than Dr F, Anastasia, Eirena and Olga....so I hang for their shifts!

Official stats for today are that everything is still dropping (which is what should be happening).  For those playing at home: Haemoglobin 88; Leukocytes 0.33; Platelets 96.  All jibber-jabber to me but I can see what I need to get back to before I'm released so hopefully with good behaviour, all the numbers will turn within a week.....but who knows!

I get a feeling that my temp might be a little high for them as they've checked this quite a few times today and Dr F just called in to say they will check it again at 6pm; 8pm and 10pm.  I've had a sneaky go myself and it's sitting around 36.8 which I thought was okay....but maybe not!  I feel fine - if not a little weak and lazy...

My day has been filled reading, meditating, colouring, facebooking, talking to mum and dad, dozing and eating.  OMG I am not designed for this.  I have started stalking my work email to see if there is anything I can do, but with school holiday's starting next week - even that's going to go cold! 

I have downloaded an exercise app (just 7 mins of planks, walls sits, push ups, lunges and stuff like that) so that will hit the agenda too.  Any good games I should download??  I've tried playing the Trivial Pursuit app; Sudoko and brain trainer games on the iPad but ....seriously boring as bat stuff.

Well - talk about a ray of sunshine!!  Just as I was typing this I got a call from my BFF Jodie and my sister-from-another-mister Simone!   Calling all the way from Bali!!  HOW AWESOME IS TECHNOLOGY!!!   I got to giggle at their bartering prowess and pedicure story while they in turn complimented by bad-ass head....(which incidentally I still hate and can't look at - no comments required)...

So great chatting....SO great.  Love these girls.  What strong, crazy women we are!  Hear us Roar!

Just before I sign off I guess I should document "how am I feeling"....I feel...Fine. Good.  Positive. 
I still can't quite get my head around the fact that I NO LONGER HAVE MS but I feel supported, happy, calm...yeah - good.
Without question I'm a little bored...a little tired....but I don't think they're classed as feelings.

I think that's it for now....I'm quite involved in my book so might read that until dinner than throw on some movie or something. 

I have an app on my phone that says HOME is 13 days away....How freaking awesome is that!!!  C'mon Stemmies / Bloods - do your thing!!

Day 1.5 done and dusted....Boo-Yeah.

DAY 18 - LOCK DOWN

I had a very productive night emailing and reading work emails, thinking of all the things that Andy, Mum, Dad and Mons can do before my return (cleaning; shopping, etc)!    I'm fairly confident that 2am isn't the ideal time to do this but my mind was racing so I went with it!

Quite funny as it turns out that one of the Aussie girls here was online by 3am and joined by the Norwegian girl for coffee by 4am!   So it's not just me! 

My levels plummeted overnight (for the experts: Hemo 90; Leukocytes 0.73; Platelets 117) and as such, I got moved into Isolation today.  I will remain in here until my levels creep back up to normal and we can see that the stem cells have engrafted back into my system.  Could take 6 days...could take 16 - we don't know.  The Aussie girls were both done in 6 days but the Norwegian girl took 11 (and was on the verge of crazy)!!  BUT she has gone home today while the Aussies are still here so it all comes out in the wash!  (sorry - confusing from across the waves I'm sure)!

So....I managed quick goodbyes this morning before I was put into lockdown!  My room has been cleaned.  I am no longer allowed to use my toothbrush (just gargle) and I need to wash my body with ...100% vodka.  So that's interesting!!  :)

My bags have all been taken but I'm left with food, colouring stuff and electrical stuff so it will be fine.  I am going to work out a routine for myself I think.  I have a yoga app and an exercise app that I will do....maybe colour....pray/meditate....watch a movie ....read.....crosswords/sudoko...something anyway.  I don't cope well with just 'time'....I need to be organised.  (work people - if you need proofreading done...:))  Sorry/NOT sorry I can't help out with the filing!

I can't get Pandora here in Russia but I've got (very glitchy) iTunes so I have music also. 

So yes - I'm in my bubble so can't tell you much more. I have been allowed to leave 'my wall' up (they just had to spray it) and all my photo's so I'm happy about that.  They all love my room and I thought what I did was 'the norm'....turns out not so!

Right now I'm going to try and do a speech for my little sister...so that should eat up the afternoon.  As a trade she's going to make me roast veggies when I get home!  (I'm pretty confident that makes me the winner this time round)!

See you tomorrow from 'the Cell' ! 

Who knows how random these will get from now on!!! 

DAY 17 - HEAD SHAVE...TRANSPLANT DAY!!!

PART 1 - NOODY NUT

I kept comparing this day to the birth of a child which is silly of course.....I needed to go through the 'pain' of having my head shaved and then enjoy this WHOLE NEW LIFE that I am about to be given!!!  A terrible analogy but it got me through the morning!!

I sat out on the lounge waiting....waiting...for one of the nurses to give me a call...and then BANG...there she was (1st contraction).  At around 10.40am, a young lovely nurse called "Mary? Mary?"  (2nd contraction) with clippers in hand!!!! 

And then (very much unlike labour, hence the crap analogy) - 5 minutes later it was all gone and I was an official romper stomper.  You may have seen the photo on my page.  For the record....I hate it.  I feel horrid and unattractive and unfeminine and bleaugh...and I don't need the compliments (but thank you!) and that's just how I feel.  I'm vain enough to admit it.   

On the upside of course - no need to go looking for a Halloween costume this year !!  Uncle Fester is in da house.

So I had a cry, tried putting on make up, cried a bit more and then got over it.  It's hair.  It'll grow back.  There are wigs.  My little sister is a hairdresser.  THIS IS TEMPORARY.  

NO MS FOREVER....WAY WORTH IT.

I sucked it up; got over my pity-party for one and then chatted with my fellow baldies who were (of course) complimentary as everyone is.  I need to see it as a Badge of Honour or a Rite of Passage.  This girls certainly don't care what I look like (nor I them) and after some easy chatter, all was well with the world again. 

PART 2 OF THE DAY - HAPPY 'DAY 0' BIRTHDAY TO ME!

At around 12.30 - 1pm, Nicolai came looking for me, ready to start the Transplant!  I was set up in my room and Nicolai, Anastasia, Dr Fedorenko and Valva were with me.  An infusion was first put through and then about 1/2 way through that, they implanted the stem cells back into my body! 

It was intense.  Not painful but ...yeah, intense.  I had a tomato taste in my mouth, heaviness on my chest, the oxygen was splattering water all over me, and I was shaking like jelly all over.  Really quite indescribable.  But no pain for anyone researching....all I can keep thinking it...that was intense!! 

After that (stem cells all safely back in), the infusion was finished and I was left to rest for a bit, my body still shaking - like popping candy shaking.....and then...JOB DONE.

Officially, Dr F and the team (including me) have removed MS from my body (thanks to the b**** that is Chemo) and we have transplanted healthy stem cells back into my body to help rebuild a clean immune system!!   My head just can't get around it!!  How AMAZING is that!!

Of course, for me this does not necessarily mean I will see improvements - as the procedure doesn't claim to fix established lesions it just STOPS further progression....BUT I've seen a lot of improvement in others with my type of MS.  I think it's safe to say that I'm a determined little so-and-so, and as such I will do the work required to gain whatever I can!  Both Dr F and I are pretty confident here :).  I think he gets me!

I'm sure many readers are not religious or spiritual but I can honestly say I felt very connected and safe in knowledge that God has had me all through this.  I've never felt alone and I really feel that I've been carried through the tough times (and all of you slugging back wines for me has definitely helped too, I have no doubt)!  It's been a blessing:  this 'journey'...the community support with fundraising and following my page; the new friendships; the people I've met here at this time, the Doctor and team, the challenges that I faced up to...yeah...the timing was right I guess....I feel God is right in the trenches with me.  I feel safe.

Anyway - it just feels surreal.  I can't get my head around it - probably because I'm still hobbling etc but I am SOOOOO HAPPY right now!!!!  I WAS SOMEONE WHO USED TO HAVE MS.

PS ....CRAP!  I just went to the ladies and scared the crap out of myself in the mirror with this head.  This is gunna take some getting used to! 

MS KICKED TO THE CURB PEOPLE!   OUT - GONE - NEVER TO RETURN.  DONE.

DAY 16 - REST DAY

Today I still woke a little 'seedy' and had an ordinary night (but nothing on the night before).  Lots of weird dreams and awake times playing havoc with my sleep time....at one stage I was on a pirate ship and then I was reciting a poem for ...somebody.   I don't think I actually got to BE a pirate but....weird, weird, weird. 

They are pumping that many fluids and medications through me that no wonder my brain is a little water logged!

Anyway - today was my much anticipated REST DAY...AHHhhhh.  As you may have seen, the day was incredible - 22 degrees, sunny, slight breeze.  I managed about 1/2 an hour out in the sun which was absolute bliss.  I would have stayed longer had nature not called (calls ALL the time - again with all these fluids being pumped through).  BUT it was great. 

My walking was weaker than normal (disappointing?) but I guess that's to be expected considering I haven't walked farther than the lounge (which is about 10 metres away) since I got in.  The confidence was a little shot!!  Another patient is also quite weak after isolation so I'm taking it as normal. 

I was doing exercises each night but the Chemo kinda put a stop to that - will start again come Isolation time! 

After my outdoor jaunt, I rang Andy/Piper (having beautiful steak dinner at one of my sister's houses) and then mum and dad. 

Then I went out to chat with a fellow patient before she started her final 5 hour infusion!  The 3 girls I've met and been chatting with all had this infusion today which is the FINAL step before discharge (well, apart from having the line removed from their necks tomorrow)! 

I fluffed around, read, cleaned...waiting for someone to call me for the shave!!

At 4pm the other girls (and one of the carer hubby's) all emerged so we had a great chat, comparing notes, families, schools, kids...and a little bit of MS-FREE life too.  Really great bunch.

They informed me that I actually have to ask to have my head shaved!  Doh!  It was late in  the day but I caught Anastasia and she said they can do in the morning for me...like, GREAT.  She just said don't worry - tomorrow is a CELEBRATION!!!! 

So, after gas-bagging and comparing hair stories, we all left for dinner.  I then tidied my bags, ready for them to be taken away in a couple of days (not allowed in Isolation).

So - it really was a rest day and I'm glad for it.  I feel good again - got some sun - had a laugh etc.  Tomorrow will be the head shave and then sometime in the afternoon will be...TRANSLANT TIME!!  This my friends, is my new MS-FREE BIRTHDAY (or Day 0)!

It blows my mind to think about!  Here we are....on the eve of NO-MORE-MS.
Cakes, chocolate and lemonade around 4pm tomorrow!!
  
Crap - doubt I'll sleep much tonight either!!! 

See you for the celebrations tomorrow!

DAY 15 - CHEMO IS DONE.

Well....what a horrible, horrible, night!

For me, Day 3 Chemo was N.A.S.T.Y.  I was awake most of the night with nausea, stomach cramps, bloatedness, (pee stops), etc.  The nurse on duty (Olga) took beautiful care of me but every time I had something for the pain, it would only return in about 1.5 hours so was just bleaugh...really crap.

But today heralded the FINAL day of Chemo for me.  1 day....c'mon...we can do a day. 

Thanks to all your prayers, wine drinking, support etc...today (so far) has been absolutely fine.  I got up, got dressed, ate all my food, chatted with the fellow patients (now all out of ISO) both in  the morning and this afternoon and so on. 

Be buggered if I was go to let it throw me around like it did yesterday.

I didn't venture outside (which I should have because it's a lovely 'Indian summer' here at the moment), but the window was open in the lounge and that was lovely (small things)!!

Dr F came in and checked on me this morning and I was quite teary from the night before but he's so reassuring...'1 day.  You are doing such a good job.  Tomorrow you rest.  And then NEW LIFE."

He's very calming and I took strength from you all and soldiered on.

I must admit I'm a little apprehensive about night time as that's when it hits me the most but I feel a different person to yesterday so fingers crossed. 

It's 5.20pm here and I'm about to be served dinner.  I might wash some smalls and put on a movie....another day ticked off the list and another day closer to home.

I cannot tell you how grateful I am for your prayers and thoughts today...Today was SO different to yesterday....let's hope tonight it nice and calm before the head shave (I think) tomorrow...

DAY 14 - DAY 3 CHEMO

WHAT will today bring..... I'm already apprehensive about feeling crap but the girls here tell me each day can be totally different....so let's see...

I had a horrible night really.  After dinner I felt crap again so was in bed by 8pm.  By about 2am I was awake feeling nauseous and bloated and just bleugh.  I rode it out til morning though and was hooked up again at 10am sharp. 

I have no appetite and you can probably tell my 'spark' is a little diluted...but I just feel SO tired.

So the day has been spent lying on the bed ... pretty much all day long!!!! So unproductive but I couldn't muscle the energy to do much else!! 

The other girls here assure me this is short term and hey - 4 days of crap for a life without MS....no problems.

I had a beautiful chat with Piper today and she sent me a prayer and pictures so I felt HEAPS better (again quite teary though) about that.  Her, Andy, my Mum and Dad and one of my sister's and her family are enjoying a day down the beach....nice.

AND....On the upside....1 day of Chemo to go!!  Then a day's rest (with a head shave me thinks) .... then TRANSPLANT DAY! 

1 day to go....we got this.

DAY 13 - DAY 2 CHEMO

Before I begin....I feel it's necessary to paint a picture here....as I type this I feel good.  Normal.  All is well in the land of....well, Wonka me thinks.  It has become apparent to me over past 2 days that maybe...MAYBE....I am morphing into Violet Beuregarde from Willy Wonka.  She's the one that chews gums and swells into a lovely blueberry ball !!

I knew this could be on the cards, so it wasn't surprising...and yet it is!  My ankles, as previously mentioned, continue to be swollen to about the same size as my knees!  I sleep with them raised so by morning they're down a bit but, damn it if they don't come back with a vengeance around 11am! 

Today I've noticed that my FACE is now joining ranks.  I remember as a kid that I was called moonface...I think because of my shock of white hair cut in a bowl cut (thanks Mum) around a naturally round face...and that persona has taken hold again....

If I'm honest I would say it doesn't suit me (anyone that knows me, knows I'm all about being lean)...but looking for the positive....my wrinkles are disappearing with each puff of bloatedness (word?)...so....keeping the glass 1/2 full...that's a good thing!  :)

I tell ya - the steroid bloat; no fake nails; about to lose my hair; no make up; and I lose my contacts.....this ain't for the faint hearted people!!  At least you all know I'm glowing on the inside where all the good work is happening!!   MS is only days away from being eradicated!  How cool is that!

Faith, family, friendships, community, support, love.....that'll make me pretty...right....RIGHT......was that a tumbleweed..... :)

So Day 2 of Chemo is DONE.  I must admit - I felt CRAP afterwards.  Headachy and nauseous.  Not nice.  BUT 1/2 way with Chemo - 2 down - 2 to go ...so you gotta be happy with that!  And the nurses are quick with medication once you speak up so the lesson here is ...don't try and tough it out. 

I've never pee'd so much with all the fluids they run through you.   I was up every 2 hours and all throughout the day....doesn't help with a good night's sleep!

I rang Andy and Piper (too late) and she wouldn't talk (too tired) so I ended up quite teary with that phone call.  My own fault - I should have rung earlier but was flat out on the bed!  Doh! The difference between being this side and that side of the phone....

One of the Carer's has just bought me Chicken Chips - so - as with a 'usual' hangover ... I feel so much better eating a bit of fat and grease!!!  Bliss!! 

2 of the Aussie girls that were in isolation have been allowed out today so it's been GREAT chin-wagging with them again!!  Certainly brings some light to an otherwise quiet day!! 

Well ... grubs up so I guess that's it for today.....Russia HSCT HQ out...

DAY 12 - CHEMO BEGINS

Again ... you would think an event such as this might attract a bit of fanfare but no...all in a day's work here at Russia HSCT HQ!   Everyone very calm and efficient as always.

I must admit, I haven't really been apprehensive about this part of the process ... as it doesn't involve sticking needles half way down my body...and was virtually 'reading over it' on my daily schedule!  Actually - in all honesty - nothing has got me truly worried at all....forums and research are wonderful things (even this morning I watched a video of a fellow patient having his transplant so I even know what that looks like)!

Anyway..

With thanks to Olga who gave me an injection of pain killers last night, I slept surprisingly well and woke with minimal pain in my neck. 

Dr F was first on the scene giving me an outline of the day and what to expect from the Chemo.  Everything in detail...love it.   At about 11am Valva came in with the chemo and hooked me up and that was it.  It took about an hour or so and then, job done.

Anastasia was here with me at the finish of the chemo and she explained tablets, drinks, etc for me. 

I feel SOOOOO lethargic but other than that, no complaints.  I've had something to eat and drink and I'm trying to rouse myself out of bed...I don't feel nauseous but I'm definitely 'fuzzy'....so trying to walk out to the lounge with my computer and a drink does not seem wise right at this minute!

Just called home but Pipes could barely get to the phone she was so busy with Mum and Dad's dog...sigh....

Will wait for lunch then venture out to the lounge for a change of scenery....

No picture today but rest assured I'm still smiling! :)   Same process for the next 3 days ... gearing up for TRANSPLANT DAY....aka NO MORE MS DAY!!!!

Ugh... so TIRED!  Surely it's close to 8.30pm??!!   :)

DAY 11 - NEXT LINE IN....

Well - after a night without anything sticking out of my neck...a slept a little better.

My feet have swollen up to be as fat as my knees....I believe 'cankles' are all the rage in Russia at this time of year.  I'm pretty sure most of the others have experienced the same (thanks to the steroids).  I never experienced this in pregnancy and heck....it's neither attractive nor comfortable!  Not even hot pink nail polish is helping....what's a girl to do.

I enjoyed a night without the CVC (thanks Lynne!) but then today I have had the next line inserted into my neck...this one for the chemo.  It is a thinner line but to me....is hurting more.  I think the couple of stitches they popped in might be pulling.  Perhaps he saw my drooping skin and thought he'd help me out....bless.

I'm assured I won't even feel in a day or 2 but for now it's a tad annoying....but fine. No complaints.

Tomorrow heralds the start of  4 days of Chemo.  I don't really know how I feel about this.  Others have all had different experiences and on different days.  I have been assured that as soon as you say something is amiss (eg nauseous) they medicate you and you're fine.  I believe fatigue is the big, common 'complaint'. 

I feel like (so far) I am coping well.  Minimal tears, days filled with mindless 'jobs' for myself; afternoon chats.   I never really had any fear about coming here (after initially watching Kristy Cruise on 60 Minutes and then following a multitude of others complete the same, remarkable journey on a forum) I feel I researched pretty thoroughly...and I can confirm - if you are reading this and thinking about coming...CANNOT RECOMMEND HIGHLY ENOUGH. 
I'm here by myself and feel safe and supported (mind you, other carers, patients, FaceTime etc have been invaluable beyond words)!

Dr F has been here EVERYDAY since I arrived.  He explains every stop of every procedure in minute detail and ensures that I understand.  He has a true relationship with each of us.  He works with SUCH kindness and love.  He is exceptional.  We went through all the tests (again, in fine detail) and everything he does, he explains.  Anastasia is exactly the same.  And today Nicolai was the same again...step by step of what they are doing so nothing is a shock. 

I just adore the staff.  Dr F, Anastasia, Nicolai, Olga, Eirena, Valva (?), Sventlana....don't you love the names!!  They are all incredible and so invested in each and everyone of us.

Today see's another patient leave.  "Bill" our wonderful food provider will be taking his son home to America.  They (again) were absolutely delightful and another wonderful part of my own journey.  Best wishes guys...enjoy MS-free life!

Can you believe it...in about 1 weeks I will no longer have MS.  Pretty freaking awesome hey!  MIND BLOWN!!!!   * Insert happy dance here * !!!!   Thank you to everyone that got me here.  THANK YOU!  THANK YOU!  THANK YOU!!

DAY 10 - STEM CELL HARVEST

Well - results are in!!   2.01MILLION stem cells have been successfully removed from my body, ready for a good cleansing before being reintroduced to my body sometime next week!!

I am so excited !!  Sometimes the 'harvest' can take 2 days (which is normal) but I said to Dr F that I was going to do it in one and BOOM.  1 day baby! 

I was hooked up to the machine from 7.30 until 1.30pm so 6 LONG hours!! I pretty much just dozed the whole time until the last hour when I watched some TV...it was fine.

I got really tingly lips, hands and feet (which is normal) and while that didn't feel great, it was fine in the big scheme of things!!

Once I had finished, they gave me half an hour to go to the loo (Amen) and eat my breakie, then steroid infusion and done.

I was sitting out in the lounge when Dr F came to find me to let me know the magic number!  2.01M is absolutely fine (2.0M is required).  I think I may have shed a tear I was that happy!  He is so gracious - saying I did all the 'hard work' and laughing about my efficiency hang ups!  Competitive much?

As a 'reward' I have had Vlad the Impaler (thanks Princess) taken out of my neck for a night.  They will insert the next line (for the chemo) tomorrow but I think that's all tomorrow will entail.  I said to Dr F that I feel good and I'm happy to just keep going but he has said the usual protocol is to start chemo Friday...D'oh!  Couple of chill days coming up (which of course is fine). 

I think there was a bit of 'trouble' starting the harvest to be honest.  The machine was set up next to my bed and seemed to be working fine but then it kept beeping (with a little red man flashing at my eye level) and everyone was in looking at it.  They'd adjust things, leave...come back....look...adjust...smile at me and give me the thumbs up....leave...come back.

After about 1.5 hours Dr F moved the machine to the ground so my blood didn't have to flow 'up' to the machine and from then - everything was super smooth!  It was amazing to watch the 3 different bags fill - 1 with platelets; 1 with blood; 1 with stem cells...fascinating!  (I think that's right )!

So that's me done for the day - stem cells OUT; neck line OUT...another tick on the page!

Got my daughter's school photo's sent through today and she was full of chatter tonight so that was great....sad....great!  I think she's as addicted to facebook as me .... poor love is going to be devastated when she loses it in 3 weeks when I'm home!!! 

Oh - and joy amongst joys - I didn't have to make use of the ADULT NAPPY that we are required to wear .... anyone that has spent anytime with me with attest that THIS is a miracle in it's own right!  6 hours with no wee stop...now that's a win in anyone's books!

Feeling GREAT.  Thanking God, prayers, rain dances, candles, thoughts, positive vibes, fist pumps, raised glasses etc!!  Mwahhhhh!

DAY 9 - NECK CATHETER IN

Today was my final day of steroids (for now)...

I can't get the photo's loaded on here but they are on my Facebook page and show that I haven't seen too much difference (other than lack of sleep)!  My legs aren't any more hairy than they were last week; my chest hair remains minimal, my muscles remain huge and my abs...well, yeah no - hard to see a real difference...

But the exciting thing of today was that I had my neck catheter (sorry - correct name escapes me) put in.  The A-Team - Dr Fedorenko and Anastasia  - came for me about 9.30am and took me down to a small sterile room where I was to lay on the bed facing left.  A different doctor and nurse came in to do the procedure while poor Anastasia stayed and took photo's for me.  She's a little sick so went home straight after...

Sorry - this is more for my record than your reading - they cleaned me with alcohol (99% sure it was pure vodka :) ) then anaesthetic then the knitting needle was IN.  They pushed ....and pushed...and pushed until it was in and then (I think) threw in a couple of stiches and stuck it all down and I was done.  I'm pretty sure it was poking out of my belly button but the nurse assured me it only goes just past your chest.
I think it perhaps took 20-30 minutes including all the preparation.

I feel like I it handled pretty good - few jokes lost in translation - but all good.

I got the shakes quite bad afterwards which was weird but hey - it's done.  Big tick.

From here they shuttled me up for a quick x-ray to make sure the line was in the right spot and job done for the day!

This line will now be used TOMORROW for Apheresis (Stem Cell Collection)!!!!  This is when they set me up for 5 hours on a machine that will harvest stem cells, to be retransplanted back next week!  It is common that this will take about 2 days, as 2 million stemmies are required, but I've discussed with Dr Fedorenko that I'm quite efficient so we'll do in one day thanks so much!  He laughed and agreed.  Let's go for it.  7.30am kick off.

So - I appreciate it's early days but I'm killing it (if I do say so myself)!!

I spoke with Mum, Dad, Andy, Piper and Mon so that always makes me feel closer to home.  Paid a couple of bills, did some online shopping....heard about Malcolm Turnbull and pretended to care...where would we be without the World Wide Web. 

The rest of the day I've tried to spend out in the lounge area, as, as I've mentioned previously - I'm losing 2 of my favourite Aussies tomorrow....then this week will see most of my other beautiful comrades leave (or remain in isolation) so that will change the feel of the place for sure.  Luckily I have a few carers to hang out with and another patient who is out of Isolation for another couple of days so it's all good.  I've also had an American lady and her carer join us so she will be up on this level soon I should think....such a well-run operation!

I did make comment to some of the group today that, with this neck line now in....I've finally joined the band....and now the band is breaking up! 

"Bill" brought in dinner again tonight (what a crazy kind soul) - steak and mash and we chatted about his mink hat purchases!  Gotta love Moscow don't you!

It's amazing to watch the good byes are there is no hugging, kissing etc yet the bonds formed here are incredible and obviously for a lifetime.  This experience - becoming MS free together - is ...nope...words fail me...it's HUGE...LIFE-CHANGING HUGE.   And all farewelled with just a wave and some kind words...

Anyway - tomorrow's a BIG day!  2 million stem cells in 5 hours.  Bring it.
Feel free to light a candle, say a prayer, send good vibes, think of me, do a jig, have a wine...whatever you thing will help!!

Safe Travels B&D.  It's been an absolute honour and privilege meeting you.

Much love!

DAY 8 - DAY 3 OF STERIODS

I'm a day late with Sunday's updated as it was a day much the same as Saturday  - but I want to log each day for myself in the future.
Sleep is challenging, especially with the 11pm and 3am shots!  I've heard from all the others that we are all suffering the same in that respect - we think a side-effect of the steroids.

So - I plucked out my newly acquired chest hair and benched 150kg...nah...I had the infusion around 10am and then fluffed around from Breakie #2 to Lunch.

After this I went into the lounge area to get my fix of Aussie / USA positivity and chat with 'the gang' of Russia HSCT HQ.

I chatted with one of 'our' ladies getting ready to go in to Isolation as she, oh so patiently, waited to be locked up!  She was one of the 4 who celebrated their transplant together and all the others are in Isolation now.  It's funny but I think it's actually something you really WANT to happen, as just WAITING for that next phase must be excruciating! 

So sadly - all but 2 of the posse are either in shut down or LEAVING!!! :(

I spent the evening last night chatting with my PPMS team-mate who will be leaving for Australia Tuesday.  Talk about inspirational!  I found him awe inspiring to listen to and watch and he (unbeknownst to him) has been such an inspiration and gift to me with this journey.  And his carer is just the most incredibly kind, giving, selfless, amazing lady that I could have possibly hoped to meet. 

This group has been phenomenal for me and has certainly set me going in the right direction!!  Blessed beyond measure by each and everyone of them!

Anyhoo - I sat up last night listening to PPMS man and his amazing life story.  There were tears, laughter, cursing....just your usual Sunday night banter! 

Sleep still eludes me and I was too nervous to take the sleeping tablet as they make me feel bleugh so I struggled through another broken night...but all good!  Neck catheter in tomorrow so another tick off the page!

Feeling blessed beyond measure to be here, with these people at this time.

DAY 7 - DAY 2 ON THE 'ROIDS

No chest hair to report and my voice is no deeper than yesterday...

I think today was a pretty quiet for all of us here at Russian HSCT HQ!

I slept horribly - still awake at 3am...

The nurses come in at 11pm and 3am with injections to stimulate the Stem Cells.  They WILL quietly wake you and it takes 2 minutes but I was awake right up til she came in.  So frustrating.

I don't know if it's a side-effect of the Steroids because I'm not anxious or anything like that at all.

Anyway- due to limited sleep I still got up etc but kinda flopped around until about midday and then went out to the lounge to chat with the 'gang'!

An exciting thing was I got to meet 2 men who have come out of isolation.  I had already met their (amazing) carers and it was so great to meet another 2 gents that are at yet another exciting stage.  Engraftment done, new stem cells working, immune system rebuilding.  Nice work boys.

Both gents are doing great but I was especially excited to see one that has PPMS (Primary Progressive MS) the same as me.  He was doing things he hasn't done for 6 years!  I was euphoric for him.  He was walking without a cane; could open drink bottles etc.  It was a honour to see!

We all understand that this may be the effect of the steroids in us - but what a wonderful sign of what the body is capable of!

A shared philosophy here is if science can work with the patient and the doctor, and the brain believes (All about ATTITUDE) then anything is possible.  Throw in a bit of faith and honey - we're in high heels.

I also got to meet a new lady who will be doing the treatment about the same time as me so that's nice to know as my current 'gang' will be starting to head home next week (whimper) and the other 3 girls are in isolation and I think there will be no (or minimal) crossover between them coming out and me going in. 

My HSCT buddy is from the USA and she is 1 day behind me in the treatment schedule but I'm guessing that we'll catch up with each other somewhere along the way.

I finished my LOVE wall today which is a collection of notes from darling friends that I brought over here and opened (as mentioned in earlier post).  I absolutely love it and while it has brought me to tears (of gratitude and love and laughter) it is my pride and joy in the room (that and my photo's and poems from my daughter).  If anyone reading this blog has someone coming over - I highly recommend organising it for them!!

I wanted to work on my food blog today but I was too tired to be funny....you know how it is! 

If  I was to tell you how I'm 'feeling' .... I free absolutely fine.  I miss home of course but Dr F is my hero and Anastasia his trusty side kick - the staff are so efficient and lovely - the 'gang' here is a Godsend (have I said that already)?  They are amazing, amazing, amazing.  I feel very blessed to be here at this time, sharing this experience with all of them (Dr, A, Nurses, Gang), even though they are  at the tail-end of their journey and I'm just beginning.  Even that has had it's obvious benefits as they are a wealth of knowledge of 'what to expect next' for me....

I am just so full of appreciation - for the last year and the ridiculous support I received to get here - and to  being here NOW with these people. 

Russian HSCT HQ out!

DAY 6 - IT BEGINS....

You would thing it would be more spectacular...or nerve wracking...but no.  All pretty calm and normal for Team Russia.

I started today with a Steroid infusion.  The nurse just hooked me up with a needle in my arm stressing DO NOT MOVE.  Easy.  I took a photo with my free arm (as you do) and laid back listening to a meditation app.  Piece of cake.

After 20 minutes I rang for the nurse as the infusion had finished.  She came STRAIGHT in (so efficient) and looked at the needle and said ...YOU MOVED!!!  "No No - I did not".  YES. YOU DID.   My arm had a bulge at the needle point.  She said it wasn't a problem but to do better tomorrow.  Lesson learnt.  No photo's.  Oopsy! 

All fine in the end .  She wasn't angry (at all) but was just concerned it had hurt me (which it hadn't).

So that's it now until 11pm tonight when the give me an injection to stimulate the stem cells..hereon called Stemmies! :)  I have cleaned my room (Brydie - roll your eyes here), done some exercises, caught up on emails; read my book, had my 2 breakfasts (the food deserves a blog of it's own). 

I sat out in the lounge area for a little bit just for a change of scenery and chatted with one of the Aussie patients and one of the carers.  I adore them.  The carer has spoilt us all silly and comes in every day laden with bags of goodies for her hubby, the other patients and her new grandie!  She's brilliant (as is everyone). 

I just had a FaceTime call from one of my besties which is SO good for the soul.  She makes me laugh...a lot.  I can't imagine doing this without FaceTime; Messenger; Facebook; email etc!  Just seeing people from home makes everyone feel close.

Perhaps that's why I'm coping so well.  Great people here, great people home.  Totally and securely surrounded by love, laughter and togetherness...

Well - Lunch has just been served and I don't think I'll have too much to report on this afternoon so I might leave it here for today.  Tomorrow will be the same as  today so I might use the day to blog on my dining experience.  I NEED to work out how to upload photo's before then!!   It's one to tune in for I'm sure!  :)

Steroid muncher (for 3 more days) over and out.

MY WALL

I have started to add to letters and cards to my wall.  My darling friend Kylie suggested that the Gold Coast Dragons (my team and basically family on the GC) write me notes that I can read while here.  Another girlfriend has done the same so I came to Russia with cards from work friends; notes from the dragons and cards/notes from another darling, darling group of friends.

Each one is just beautiful.  I am brought to tears every time I open them and I am savouring each one!  I'm opening only a few a day and it's the highlight of my evening.

As I was re-reading them today I thought...."Who do these people think I am - I'm not anyone special - I've done nothing special" and yet it seems they all really like me!!  :)

I can remember one (or perhaps 2) friends saying  that when they first met me (many years ago) I was totally unapproachable / untouchable or something along those lines!  I can't tell you how upset this made/makes me.  I thought I was a welcoming type person...I have always wanted to be included and inclusive.  Apparently not.  As an adult I've always been insecure (especially when I moved to the Gold Coast) and pretty much always felt inferior to others....but obviously the walls I put up made me look conceited...arrogant...snobby or ....let's face it ...a bit of a bitch!

BUT I'M NOT TRUST ME!!

Anyway - I broke down those girls (or they broke down my walls) and now they're some of my nearest and dearest friends...

It got me thinking....had I not become vulnerable...would I have the love and support I have now? 

I was gutted when I got MS.  Really gutted.  Like, what the hell.   I was active and busy and I felt that that was what defined me...what made me count as a friend.  I was the girl who met you at the gym...walked on the beach...was up for a day's shopping.  What could I possibly offer without being that person?  I felt I had nothing of value to give.

I don't know if it says more about me or more about the friends I surround myself with, but pretty much everyone has let me stay in the gang, even though I'm pretty useless and still struggle with "what can I offer"...

Maybe getting this disease has has taught me to be a better person...I think I'm approachable to everyone; I adore and appreciate everything about my friends, my family, my faith, my work; I take pride in the things I can do; I think I'm pretty down to earth; I'm good for a chat...I certainly don't think you'd call me conceited, arrogant, snobby or a bitch anymore.

So for that I am thankful.  I am thankful that my family is amazing and so supportive.  I am thankful for the beautiful, divine, amazing, inspiring friends I have.  I am thankful that I work in an incredible workplace with phenomenal people.  I am thankful that having MS has reignited my faith and that I have always 'rested' in the knowledge that 'God has this'.  I am floored by the support of my Community.  I appreciate the little things (while still missing the sporty stuff...I'm only human). 
I am especially thankful that it appears that I am LOVED...even with this ridiculous excuse for a body.

When Dr F halts this disease....I hope I can continue to be that person that many of you think I am.

DAY 5 - MEET WITH DR FEDORENKO - TEST RESULTS ARE IN!

Today is a little bit of a nothing day…and yet it is a big day because I get the Green Light to go ahead with treatment!

I have spent the morning learning how to do this blog, tidying my room etc.  Very uneventful morning.

As always, Anastasia has popped her head in to make sure all is okay as had Dr Fedorenko.  He is just doing the rounds with the transplant patients and then will come see me to go over test results.  He has already indicated that things are good so it’s a little bit of an anti-climax but I am keen to know results of things like MRI’s as my last one said I had no active or enhancing lesions and yet, since that time my right leg has deteriorate quite badly…like, really badly.
My hope is that this will be reversed by HSCT even though that is not the promise of HSCT.  The procedure only ever claims to HALT the disease but my hope…my enormous hope….is that these new symptoms will disappear and I will see some improvement….great improvement.
I know I shouldn’t think like this but it is so hard not to when you see the results of other patients.
I have just had a meeting with (my hero) Dr Fedorenko!  OMG He is an amazing Doctor!  He spent probably an hour with me explaining the results of all my tests and showing me the MRI’s etc.  He confirmed that I am in normal health….other than having MS. 

He thoroughly went through the procedure, the background, the science, the research and so on.  Things that stick in my head are that he said he treats the patient – not the disease.  Every patient is different and must be treated with love – that’s the key.  Between his team and my team, we predict 100% success of stopping this damn disease….and I’m going for improvements too.  I can assure you…I’ve been called a lot of things I’m sure but I am NOT a quitter and DETERMINED to the bone to beat the crapper out of this disease.  Between Dr F, my faith, my friends and family and my own dogged determination, I got this.

So, tomorrow I start with injections to stimulate  the Stem Cells.

This afternoon I went and sat in the lounge area with 2 Aussie girls and some of the Carers (husbands and wife) of patients.  It was so great to chat and listen to the amazing stories of these people…we all have one thing in common – we refuse to be beaten!

It was a lovely afternoon, eating Pizza that someone brought in, talking, laughing….what an amazing group of people.  I’m kind of tagging onto the end of their journey but they are so welcoming, kind, interesting and lovely. 

One girl from yesterday’s transplant group has already gone into isolation as her levels have dropped to the required level! 

How professional this operation is!

I have this disease (for another 10 or so days) but how truly blessed I am.

DAY 4 - END OF TESTING AND MOVING ON UP TO LEVEL 3!

Well I woke at around 3am which is becoming a bit of a habit.  I’m not anxious so I’m putting it down to jet lag.  I dozed on and off until about 8am and got up, did make up and hair, got dressed etc.  I’m not sick so no need for PJ's (good advice from Jane – another HSCTer).

The food here is a constant source of entertainment for me.  For 1^st breakie I had porridge which is really nice, along with a cold boiled egg – also fine.  2^nd breakie was another 4 stewed apples and a yoghurt.  I’ve passed on the apples so far but I now know what to do with them - either dip or mush into the yoghurt!  Lunch was (I think) the dreaded Ox Tongue …although I’m still not sure!  WHAT THE HELL!  Luckily there was a fishy soup and mashed potato so I just left the tongue …thing.  Ain't no way.   Honestly – it's funny so long as I don’t have to eat it!  Bleugh!  Dinner was … Porridge! J  Which is actually really yummy so no complaints!

Anyway…today saw me go for a Heart Ultrasound and then an Eye test.  The Eye test was surprising as one of my eyes has deteriorated to -3.00 (usually -2.75) and also there is damage to an optic nerve (that apparently vitamins will fix).  That was the one test I wasn’t worried about at all so it was surprising to find something amiss!  They are so efficient and thorough here.  Super impressive.

Dr Fedorenko dropped in to tell me that all tests looked normal and we would be good to go starting Friday but we will have an ‘official meeting’ tomorrow to go over all results.  So I think it’s safe to say I’m on my way!

The rest of the morning was filled with chatting with people on Facebook, FaceTime or Messenger!  At about 2.30pm I was moved up to Level 3 which is much better.  I’m in a room that is all ready for isolation.  I’ve stuck up pictures and cards and will continue to do so over the next couple of days (to give me something to do)!  It’s too traumatic reading all the lovely things from everyone to open all at once…and I want to drag out the sweet agony!! J

An ex-boss that I was Messaging mentioned to me today that I should write abut how I’m feeling but in all honesty I don’t know!  I don’t know that I’m nervous (although I’m sure I’ll wet my 'adult nappy' on the day(s) when you have to stay still for 5 hours which will worry me).  I know I’ll be nervous when they at putting in the lines in my neck; and shaving my head; and the transplant procedure but so far…it doesn’t even feel real!  So I am blissfully unconcerned I think. 

Today I met 2 Aussies ladies and a Norwegian girl (and the Russian girl from Day 1) who all had their transplants today and so therefore their new birthdays!  I got to join in on their party which was great! 

There was about 10 of us there including the 4 girls, carers (both of the girls and other patients in isolation) and Dr F and Anastasia.  It was so good to chat to people!  Hooray!  All this alone time doesn’t really work for me!

It was so fabulous to see these girls and hear of their experiences and see that they all came out well!  All had different stories about heavy chests; low blood pressure (that’ll be me for sure); difficulty breathing; metal taste in mouth and so on but it’s good to know and Dr F and Anastasia are right there watching and reacting to everything.  I'll ask one of the girls today how long the transplant takes so I've got that in my head.

I got to meet a lady (another South Aussie) who is the carer of a man in solation.  Her name is Betty and she's gorgeous!   She's been doing shopping for patients and is so helpful!  Hopefully she will get me a Babushka doll or 10 this week at the market! 

After the party, I came back to my room for said dinner (porridge) then ‘decorated’ my room with cards and photo’s.  I love reading what the Dragon Boaters wrote, my work colleagues and other friends from the Gold Coast.  VERY humbling to say the least.  I can’t believe they truly think this stuff about me!

I'll finish my book and probably succumb to another episode of Orange is the new Black!  Hauntingly addictive but I’m dreaming/comparing to my stay here to the show!!  (no - not the lesbian love affairs or the violence....but the isolation).  Madness.  That’s what happens when you watch 12 episodes in 2 days!

DAY 3 - TESTING

So - how it works is you need to pass testing before they will commence the procedure on you.  If you don't pass - you go home.  Game Over.  I only know of 1 Aussie who has not passed testing so I should be fine but you just can't help but worry after investing so much (financially, mentally etc) in this.  Talk about putting all your eggs in one basket!!

I woke around 5.30am this morning – trying not to be nervous!  At around 7am a young nurse came in and took swabs of my mouth, nose and butt…yes. Butt.

Then Anastasia came in around 8am and took me across the hall for blood tests.  All very similar to Australia.  Lots of blood taken but not unfamiliar at all so all fine.

From here I was back in my room for a little bit before being collected for an Ultrasound of my kidney’s and lungs and then an internal examination which is always lovely.  I was sure I was going to pee myself!  (Sorry readers...just keeping it real).

Next was a breathing test, followed by an X-Ray of my heart and sinuses.

Back to my room for a few minutes before I was collected again for a line to be put in my arm for the MRI contrast and then taken up for MRI's of my brain and spine.

I think that I just have an eye test to go but not 100% sure.

Anastasia was with me for most of it and she’s such a comfort.  The other nurses etc are lovely also.  They are mostly non-English speaking so that's a little tricky if you have questions but Anastasia is all other everything so I don't feel like I'm lost of unaware of what's going on.  I'd say they're pretty used to Aussies by now!

I’m not sure what the afternoon will involve for me now.  I have just had "2nd breakfast" delivered (and for today's entertainment it is a cold boiled egg, steak and 4 stewed apples)so I'll have a go at that then I guess I kick back again. 

For anyone ready this preparing to come...I'm only very new here but there is a LOT of down time so be prepared for that!  I am spending today trying to catch up on this blog, reading, colouring)!

Tomorrow they will move me to the 3^rd level (which is actually where isolation etc is but they have said it is easier to move me there than to move me tomorrow and then again after chemo.  I'm happy about this as I understand there are Aussies on level 3!

I’ve talked to Mum and Dad, Piper and Andy on FaceTime which is a godsend!

Anastasia just came in and now I’m being taken for an Ultrasound of my legs.  Talk about thorough (I love it)!  It’s better to be busy doing something than just sitting here….I’m sure I’ll change my mind when the big stuff starts happening but for now it’s good to be out and about even if just for  testing.

I am being ferried around in a wheelchair a fair bit which is great but also so frigging frustrating.  My legs are not coping great.   Probably no more than normal but it feels really obvious here for some reason.  However, everyone is great and it doesn’t appear a huge problem so of course I’m just going with it. 

The underground system in the Hospital is amazing!  The hospital is about (I guess) 4 or 5 buildings for different departments.  You can hop in the lift and go underground to the basement and it's a mouse run of hallways all joining up to the different buildings!  All fully tiled etc.  Pretty cool

DAY 2 - ARRIVAL AT HOSPITAL

Today I was allowed a little sleep in after Piper face timed me at 1.40am my time!!   Check out in Russia is at midday (how civil) so I lounged around in bed for a bit, then facebooked, tried the 7 minute exercise routine and some yoga (somewhat unsuccessfully) and stuff like that. 

I got myself down to the reception (dragging a freaking heavy suitcase across the carpet, plus other suitcase, plus computer bag, and handbag!!)  Anyway – I rang for the taxi who came straight away to bring me to Maximov Hospital!  He spoke no English but got me here no problems.

When we arrived, the security is HIGH!  There are armed guards (!!) everywhere, a check in point and it's all fully fenced.  I had to go into a transportable and wait with my luggage for someone to collect me.  The ladies in the transportable also spoke no English but I worked out I had to show my passport to gain entry!

Nickolai came to collect me and walked me to the building.  I made it about 50 metres before he ran to get a wheelchair (bless)!  I was brought up to Level 2 and put into a room with a Russian girl.  She was just finishing chemo today and has been taken up to Level 3.  She didn’t speak to me so can’t tell you much about her!

I’ve been given 2 of my interesting meals which will be a daily source of entertainment I’m sure.  Today was soup and then cauliflower and a tuna pattie thing.  Tonight was a stew and a meat in a can thing (that didn’t get eaten)! 

A fellow Aussie patient just popped in to visit me!  She is lovely and has also just finished her chemo today!  She gave me the low down on what goes on and what to expect with tests (internal sounds just lovely).

Well, testing starts tomorrow with MRI’s, heart, lung, kidneys, eyes, ultrasound, internal (L), blood tests, swabs and so on.  Sounds like a busy day but if not, I’ll put on my big girl pants and try to visit some Aussies or at least sit out on the lounge and see who comes to visit (if anyone)!

Filled in today just watching Orange is the new Black which, as promised, is addictive.  One more episode then shower and bed me thinks.  Tomorrow sounds like a big one!

Oh also, Kim Renee and I talked on Face Time so it was great to catch up with her.  She's another Aussie who is coming over later this month!  Great girl and lots of laughs.  I will try to call her again to update her on happenings! 

Let’s hope tomorrow is not too horrific….

DAY 1 - LEAVING

Saying goodbye to Piper and Andy was horrific.  Piper just broke my heart.  God I hope I'm doing the right thing!  Too late for doubts now though.

My flight from Adel to Dubai was fine.  Sat next to a man doing fly in/fly out to Omar and a girl going o/s for 2 years.  Both lovely.  Nothing exciting to report.

It was a 13 hr flight and I didn’t feel like I slept but I must have as it seemed to go quite quick.  I watched 2 movies and not much else.

Dubai airport was insane.  So big and, while I’m sure they knew what they were doing, we were left a little in the lurch (me and the elderly that is).  I was wheeled to a drop off point and just left there.  Then a cart eventually rounded me and the elderly up and drove to the next stop.  Then we had to get off and walk through the metal detectors and into a massive lobby area where we waited to catch a train. 

From here we had to walk to another collection point (I wasn’t coping well by now) and then sent off on carts again.  Two more carts later, I was left in a holding area for disabled people for about an hour while they held onto my Boarding pass!  Again, I was then popped on a cart and taken to my gate.  I still had to walk to the gate etc which sounds like nothing but I was shattered.  Lesson here – pack light with carry on!

Hopefully my return journey is not the same as I’ll be masked up etc.

The 5 hr flight to Moscow was again fine.  And when I got to the airport there was a man waiting at the door of the plane with a wheelchair who took me to get luggage; through customs (so easy) and out to the arrivals hall.  Alexei was there with a sign waiting for me and he took me to Vega which is where I am now.  I don’t go into hospital until 1pm (it’s around 10am now I think).

I slept okay but I’m not going to try to sight see etc as I’m pretty shattered and just want to get to the hospital to get started. 

Moscow is enormous!  There is so much forest all around and I'm told it holds no animals (I'm sure there's a squirrel or two but no bears, deer etc).  I think I've only seen the outskirts of Moscow as the city centre was closed for Moscow's 868th Birthday celebrations!   The hotel is fine but nothing glamourous.  Certainly fine for a night.

So that’s it so far.  Nothing major to report.  I feel fine.  Not stressed or anything.  It's all a little surreal. 

I'm just keen to get started now.  And get home.