It's all about the ..... Platelets!!

Day 24

(Day 0+6)
 
Looks like I'm 2 days behind but I think day 24 was a pretty slow one in ISO so I'll brush over that pretty quick..  I thought my right hand man was going to do that update as he had a much more exciting day out in the real world (of Pirogov Hospital) being a part of a socialising, helping people and being able to be a involved in 3 birthdays!!  So very excited for them.  I got to do a quick FaceTime though the double doors to say happy birthday so that was lovely.

Facetime with these guys keeps me going!

Tongue arrived for lunch and I was talking to Dad on FaceTime at the time so he said get it into you, that's what you need to get those platelets on the rise and so I listened to my dear Dad (who would be proud), not too bad mixed in with the mash and salt and pepper!  To those that are coming here I can tell you , I am a fussy eater!  But there is plenty of food to eat and if you try and mix and match and add some spices it is all good.  The nutritional value is definitely here for us all and it's just about adjusting to another culture of food. 

Prue & Bjorn's new birthday

My levels are still on the low side but all going according to plan says Dr Fedorenko and he is happy, except maybe platelets.  I won't get to see him tomorrow for the first day since I've been here as he is off to a conference in St Petersburg, (still ever working, to present on HSCT I believe).  We need to get the words of this great man out into the world!

Did go to bed a little excited (as of course late night toileting) is almost a must I had a bit of a tug at my head and pulled out some threads - something must be happening!

Paul - cue  fill in some exciting party news here!!


Day 25

(Day0+7)

Nights I don't sleep so well still, things rattling around in the brain and I was constantly excited as to how much hair I may have shed by morning - Matt and I had decided to do a photo pillow comparison - wasn't too much excitement there once I turned to light on..  Gradually the day has gone on and I'm getting a little patchy here and there!

Fluids done and bloods taken early, now to wait for a Dr F fill in doctor to come and let know results.  About 11am a lovely doctor comes in to sit and go through everything.  Haemoglobin still good, Leukocytes still low but that's okay, Platelets are too low now down to 13 so looks like a platelet infusion for me today.  Felt a bit teary as it wasn't something I wanted to do and I felt good and everything going in the right direction.  It's really no big deal, sounds like about 50% of patients need to have this but I guess sometimes you don't want it to be you..  Chin up though, this means that it should help boost everything else onto the right track and I'll levels will start flying tomorrow..

Danger, Danger, just kidding...  I just need a blood transfusion to get my Platelet count up!



On the tram - only -6C!

Only thing now is to wait...  I want to see Paul to tell him, he's on the way on the tram (in the freezing cold).  I want that big cuddle that I can't get - but I'm okay, oh my god I can't wait for that!  I want to be Strong - I can do this but it's the unknown, don't know when, don't know how it comes.  Anastasia comes to have a chat and gives me a big hug to let me know it is perfectly fine and it is done all the time.  We just have to wait till department is ready to come.

Long afternoon and finally about 5.30pm a bag of platelets come in and get hooked up.  Thinking I'm not ready as I don't know how long it will take (like to have my digital organised around me), I pretty much pushed that aside and just drifted away.  It was very exhausting, although considering I'd probably been awake since 5am didn't help either.  The doctor checked to make sure it had started and the nurse was constantly in and out watching the level go down and I just drifted away.  Maybe only took half an hour and then I think I slept for an hour, waking around 7pm.  Waking to of course desperate pee time but not sure if I should just jump out of bed too quick.  I called the nurse and she helped me to the toilet,  she then sat me back down and brought my waiting dinner and made sure I was settled to eat something before going back to bed.  This nurse had no English but she communicated in such a caring way to make sure that I was all okay.  Made sure I had everything for my dinner and then came back to make sure I had eaten and gone back to bed.

Signs its working - my hair is falling out!

Transfusion time to boost my Platelets

In through the neck catheter

Back to bed and lights out for the night - haven't been that exhausted since transplant day..

(Thanks to Emma for the quick chat in the day for keeping my mind at rest as well - it wasn't bad at all just the build up!)

Oh and I also ate the liver and buckwheat for lunch - I'm hedging all my bets today - Fingers crossed for some good results tomorrow!!!

And I wake up and I know it's gonna be, it's gonna be another ISO day for me!!

Day 23

(Day 0+5)

I wake up with all these thoughts flying through my head and I want to get them down as quick as I can, whether they make sense or not..  As you know I'm always writing about the day before so sometimes it's hard as the new blur with the old and I feel quite differently from one day to the next.  I had planned to write as soon as I awoke this morning but ended up chatting to mum on FaceTime which was great, always lots to talk to my mum about x

Yesterday I was tired, really, really tired, and the emotional toll was running through me again.  Hadn't had a good nights sleep, my bad probably as I wake every couple of hours, check out the internet, never a good thing for broken sleep, get random texts as I don't like to turn my phone off - Always good to have gym membership check in as "they want me back" or the pet store letting me know they have 20% of for a few days!  Doesn't bother me, the normality of things like that are great..  Oh and my daughters school has an app and notices pop up on activities and I love keeping up with it all.

Thinking about what I'm going to be able to do when I kick this MS out of town is always on the mind as well..  

Coming into HSCT the main goal for us all is to HALT our MS in it's tracks so that we don't progress and that will of course be AMAZING! 

But..... I plan to follow in the footsteps of some greatness before me and hopefully make some leaps and bounds in improvement as well - I'm not going to be unrealistic about it and it will be baby steps and a long road to recovery but I'm HOPEFUL and POSITIVE and they've got to be the most important things that you need.

I looked out at the snow yesterday, what a beautiful sight that was and I said to Dr F, I'm going to ski one day - he said "I want to see a picture of that!"  High Heels, I know you've heard me mention are one thing I can't do but love and it’s really not that important but once you can’t you want!  Well I saw a photo of one of the HSCT veterans "Amy goes Ninja" who was here a couple of years ago and she was strutting some heals, how awesome is that!  I know we'll all be different and I’ll do things in my own time.

Time with my family and friends, special times is what I want..  I’ve had lots of photo’s being sent on messages and I just love getting them everyday..  Photo’s of the street, quotes that mean so much, old photo’s of fun times..  I have so many people in my life that I am blessed to have.  I think I may have reclused a little over the last couple of years as it always felt just to hard to make the effort to do things, be organised, drag my body around but I miss those things and I have plans, maybe distant plans once this body catches up but I’m 42, I want to live a full rich life!

Man I can really prattle on..  Maybe it’s to vodka bath seeping through my system!!

Paul visited through my window a couple of times today and brought me some extra treats!..  Love seeing him although not easy for him seeing me and I know he wants to lean in and give me a big hug and kiss as do I, it’s also hard to talk as we have to yell through the door so easier for him to FaceTime me from the couch outside.  He has, although, become quite well known around the hospital with the International patients..  Welcoming them and showing them the ropes, I always thought it would be me making the bonds of life but I think he has made some amazing friends and is helping everyone with getting used to the routine of hospital life which I think they are finding invaluable..  Lovely people arriving, I actually had a FaceTime with them from upstairs to downstairs so got to meet them all..

Paul is one in a million, I only hope he knows how much I love him and how my life would not be complete without him!

The day goes by again with the fluids, bloods, injections, washing room, washing body...  Waiting, waiting to see when that hair might start to fall, that will be exciting!

Hanging out with my girls!

Another big dinner chat with the kids over Face Time always makes my day.
Movie Night – Sex and The City 2 – now I know it was not a favourite of even some diehards but I still love it none the less...  The clothes, the jewellery, the extravagance, just love it!  I nearly pulled out my gorgeous new earrings to wear while watching girls but they are tucked away at the moment, thought it would have made you laugh with my bald head and extra neck accessories!!

More from ISO tomorrow...

Day 22

(Day 0+4)

Might be a tad boring update today but I'll give it a go anyway, actually I'm not sure I can.  Looking back a day gets hard if I leave it too long through the day and now I can hardly remember what took up the day..

Mind wanders all over the place..  Currently thinking a lot about when I get home and now that the main processes are done and it's ISO and rest I'm finding that I'm actually getting to talk to my family some more...  They prop up the I-pad and chat and go about their business while I comment here and there, show me things that have been done and tell me about the day, it's so lovely, can't believe you are on the other side of the world and able to do this so easily.

Over the whole "Bachelor" thing I have to put in, how long can they possibly drag that out!  Does that show have any credibility in moving forward - not looking so good from this one band fan!

Think I might let Paul take over this one as I think he had an interesting day - lets see if I can get him on board for later!!

From Paul
After some calls to work I headed in to see Nat at around 10 AM. I have to mention my work and especially my team. My boss in the first instance and the business as a whole who have been supportive both in terms of leave but also emotional support. Secondly the most fantastic team of people that a leader could wish for. Their care and compassion is second to none. Without this support I wouldn't be able to give Natalie the support she needs -  I am so grateful for this.

First snow in Moscow

Overnight it had snowed 3-4 inches. It wasn't the first time we had seen snow in Moscow in the last few days, but it was the first time it had settled. There's no doubt that snow just makes the scenery look fantastic. I haven't seen snow for a while so it was just that bit more special. I tried to get some special shots but the snow had been disturbed and I didn't want to spend time exploring when all I really wanted to do was get into the hospital and check on Natalie.

Talking to Nat through the double glazed door on the entry to ISO isn't the greatest. In fact we both find it easier to use Facetime or Skype. However I really need to see her every couple of days and satisfy myself that she is really Ok.

I was so pleased to find her smiling. She has found each step so far very draining, but the isolation phase seems to be her best. She's still tired, no doubt about it, but she's not completely drained. Such a trouper and a champion. When I think of toughness I think of her. She gets knocked down but she gets up again and again (sounds like a song from a fe years ago!).  I don't know many who have this level of toughness, to come back again and again from defeat - and always with a smile. She's a better person than me.

Nat in ISO

Stuck behind the door!

We also said goodbye to a couple of other champions in Aaron and Sam. I've spent a lot of time with Sam and as as fellow carers we have become real friends. It's amazing to share this journey with others on the same path, and this shared experience assists us all.

Headed home early as there's not that much to do now at the hospital. Nat's in lockdown, my routine has completey changed, it's almost as if you feel a little lost at this stage.

This ones for you Seb!

Getting off the tram and walking the short disctance through the edge of the forrest I found myself noticing the wildlife.  Small birds everywhere, and then a squirrel. I was able to get an OK shot of the squirrel, no telephoto available but cropping is OKish. The birds were too shy, and I was too cold to stand around.

Dinner with new friends from the US, Bill and Debbie.  Bill is at the start of his journey and a wealth of knowledge on MS having the disease for 25 years. Also a last dinner with Neil and Marilyn.  These guys, in particular Neil, have cared for son of a friend (Troy). I am in awe of their generosity and compassion. If there were medals for this type of service then they deserve one.

A few (too many) beers with Bryn in the lobby of our hotel while "people watching" and then off to bed.

Organising and just let it go....

Day 21

(Day 0+3)

Before leaving for Moscow there was a lot to do and I mean a lot to do.  Preparing physically and emotionally for the idea of where I was going and what I was about to put my body through was one of the toughest things I've ever had to do..  Add on top of that packing for Moscow and being in hospital then that was just huge!

The other major thing I had to wrap my head around was leaving home for 5+ weeks..  Leaving my children was an unbearable thought that I tried not to think about very much as the slightest thought of it brought me to tears.  My kids aren't babies either and are gorgeous well adjusted young children (well I think so!).  They know exactly what is happening and want this for our family as much as we all do.  When Isabelle (13) saw Kristy Cruise on 60 minutes her reaction was "Mum, you've so got to do that!).  Seb (10) thinks about things a bit more scientifically and wanted to know the whole process but also came to the same conclusion.

I don't really think of myself as an organised person but I do often get told that I am - I think my head is often scrambled but what comes out at the other end is quite  often the organised result I'm after..

So for me, as my family & friends will probably attest, I'm quite anal and opinionated and like things done 'my way'.  Now I know they love me just the way I am but we all have our little idiosyncrasies don't we that are just a tiny bit infuriating to others but they just make us the person that we are, yes/no??

Mum and Dad had been over for a few days before their European adventure and spent some time learning the ropes, driving kids, schedules etc...  And I also had a booklet for them, especially needed since we had a 2 day gap between changeover filled with spreadsheets on school activities, kids activities, calendars, lunches, jobs to be done, music lessons, music exams, contacts for friends and schools.  And of course I made sure that I had copies of these so I could keep a track of things as they happened here, as if they wouldn't be able to cope without me being able to keep my finger on the pulse.

Well, let me tell you I think all my over organising was definitely a good thing and everything has gone to plan at home but as for me getting involved from here, not so much at all.  I've let go, for once in my life I think I've let go and it's a good thing!

I've found that my complete focus is on me.  I miss home and the kids terribly but I realise that the most important job for me right now is the make sure that I'm taking part in this journey completely and giving myself the best opportunity to become the best person of myself that I can once more be!

My parents are doing an amazing job with my children and I don't know how I will every be able to repay them - well I do know actually as all they really want is a healthy me and I'm working hard at that!

As Dr Fedorenko has told me the key to "our success" Natalie....
GOOD FOOD, GOOD MOOD AND GOOD REHABILITATION...  And I will be following this Amazing Doctors orders!!

Not sure I can follow up all that with any tidbits on ISO Day 2..  It's really the routine..  Fluids, Bloods, track levels, all going the right way, vodka bath, eat well - drool over any pictures I see on social media that involve food and imagine what I'm going to eat when I get home.  Read a bit and watch tv.

Market shopping

Oh...  and Paul was off market shopping, let's see how much he enjoys that!!

Not quite my usual SATC quote but my friend shared this with me yesterday and I loved it, hope you don't mind me sharing Brad x

Invictus
 BY WILLIAM ERNEST HENLEY
Out of the night that covers me,
 Black as the pit from pole to pole,
 I thank whatever gods may be
 For my unconquerable soul.

In the fell clutch of circumstance
 I have not winced nor cried aloud.
 Under the bludgeonings of chance
 My head is bloody, but unbowed.
Beyond this place of wrath and tears
 Looms but the Horror of the shade,
 And yet the menace of the years
 Finds and shall find me unafraid.
It matters not how strait the gate,
 How charged with punishments the scroll,
 I am the master of my fate,
 I am the captain of my soul.

I'm officially in ISO - lock down! And.... it's a good thing!

Day 20

(Day 0+2)

I'm not sure I'm going to be very entertaining writing from ISO, I mean it's me and me and 4 walls and more me!

Today didn't start out in lock down although it started very early with infusion at 7am (before I even got to pee! which is not a good thing, hey girls and guys who've been before and are here now will definitely attest).  All worked out fine thankfully and I am feeling quite good, amazing since I've felt so crap for so many days now..  Previously I'd pretty much waiting until Paul got here to coax me out of bed and help me with my breakfast, I probably overdid it a bit but no need to tell him..  Anyway made myself a cup of tea (porridge came but I just can't do it), often a boiled egg comes as well with breakfast with the lovely bread warmed in the microwave and some salt and pepper and I'm a very happy girl.

Paul arrived, very cold, it's snowing in Moscow and I think it was about -2 degrees when he got here ladled with big water bottles to get me through a few days.

It was a strange morning as we were just waiting around to see how my levels were as we 'thought' I would be locked up by lunchtime but hadn't had the definite go ahead yet.  It was a nice just casual hang out morning, think we were both feeling a bit unsure how we really felt about the whole thing of now being apart after such an intense period together but also know that it's the next best step in the process and means it's all coming closer to the end and knowing that we can soon come home..

Went and had had a quick final visit to Matt next door in case we both got locked up and no sooner came out than Dr F said he'll be in to see me.  So my levels are all dropping as they should and ISO is a definite today.  Time for this to happen..  We were still kind of waiting though as we knew the staff would come and clean the room and take away most of my things and tell Paul to go.  Luckily we still had a bit of time together, Paul got to watch some Rugby and it was nice to feel the bit of normalcy together in the room.  Then it all happened, he was told to get out, I was allowed to stay on the bed while all was cleaned around me., then kicked off the bed so it could be made.  I was given the whites to wear 'no no' I say, 'da da' she says - I will have to make a compromise on this one!!  so that's it Paul's out I'm in, ISO is here!  Quick run for some extra snacks for me and Paul come back for a heartfelt goodbye through the thick glass window.  Very surreal but I know he's not far away which feels really good.

Time for my first vodka bath!!  I still get to have a shower and then cleanse myself with two different bottles, not to be mixed, one for delicate areas and the rest for the whole body, plus a mouth wash as well as we are not allowed to clean out teeth.  My compromise is still to wear my undies and singlet but I have on the fancy white pants - not quite big enough for this girls bum but comfy enough and I don't have to wash them..  In Paul's words how could I be happier "vodka bath and no laundry to do" -  well a big bowl of Carbonara to go with it would definitely make me happier!

So I'm settled in to ISO - not sure I'll make much exciting commentary over the next 7-10 days but I'll still give it a go every now and again..

Think I might start off tonight with "Sex and the City - The Movie"..

Pass the popcorn - oh shit, I don't get any do I...  Cosmopolitan, guess that's out of the question as well...  Oh well, red frogs will have to do!!

(And now I don't have my photographer at the ready, it may be a bit boring without photo's - will have to work that one out!!)

Time for another shave off!

Day 19

I'm constantly receiving beautiful messages both via comments on the blog and Face Book and I just want you all to know how much they mean to me.  Family and Friends both old and new and strangers writing beautiful messages all giving me strength each day.  I cherish every message and am brought to tears constantly by how much care and love is being sent our way.  We are so very thankful and blessed to be here and your encouragement of us is just amazing xxx (insert more tears here)!

Kristy Cruise - without you this would not have happened for me and I will never be able to thank you enough, you are an inspiration and an amazing woman, you gave us so much HOPE when we needed it and I will continue to be eternally grateful xx

Couldn't believe how much better I felt this morning after the big birthday yesterday.  So happy to begin my "New Life" and now it is Day 0+1 and we wait for my blood levels to drop and then I will be locked in ISO.  I've started a graph, surprise, surprise so will keep you updated as I'm sure you will await with anticipation.  My Leukocytes have already dropped significantly within one day so Dr Fedorenko says doors will be locked tomorrow by 1pm so no more visits from Paul except through the window.

So this morning was really about getting the room ready and the ceremonial head shaving by all.  We've been so delighted to make some special new friends with Matt (my HSCT) birthday buddy, his partner, Laura and brother, Bryn.  We couldn't have done it without them and so the head shaving needed to be done as a team!!


And now my husband is dancing to "You Know You Want It" trying to attract my attention!!

Transplant Day - Happy Birthday - New Life - Day 0

Day 18

I'm really not sure I'll do this any justice as my wits are not in there usual place but I'll give it a go to recap what happened on this most significant day..

It was an early morning of not a great sleep, of course feeling nervous and still feeling those chemo effect so I haven't really eaten much for a couple of days - very unlike me for anyone who knows as I do love my food!

Love you girls - thank you so much!

Most of the morning was spend making sure my room was tidy (well me bossing Paul around) as we knew once things were going to happen the nurses would want to move things around and get started, transplanct time was set to start time was for 1pm.

I had a beautiful FaceTime with my girlfriends back home, they were having a party in my honor!  It was just gorgeous to see their smiling faces and for them to be all to be together celebrating me, with hot chips, chocolate cake and bubbles.  Even though I didn't feel like any of it I loved they were celebrating with a few of my favourite things.

My birthday partner Matt

Dr Federenko showing us our stem cells

Lots of sleeping as I was still so snoozy and then time to vacate the room for it to be made ready.  Dr Fedorenko came and showed Matt and I our stem cells in the liquid nitrogen, that was a bit freaky, asked him to make sure I got the girl ones and not the boy ones!!

Things seemed to happen quite quickly then, time to get those Tena's on, and in bed.  Hooked up to heart machine, oxygen, Dr Fedorenko here all the time with two nurses, Paul in the corner with the camera at the ready..  Feeling so very nervous, trying to breathe deeply and it all starts to begin.  It's a wild wild ride (in the words of Kristy Cruise), with a few rough rides in there as well.  You can get tight chested, clammy, feeling sick, headache and heart rate heighten..  I seemed to get most, hence the rough part but I still felt like I was in the utmost of high care at all times.  I thought it was done when they showed me the bag was empty but that was just the first one, here we go again.. More clammy and sick feeling, rectified with anti-nausea and pills as soon as I mentioned anything.  When my heart rose this was dealt with quite quickly and brought back down with a dose of Magnesium  which was this most intense heat feeling down your body but rectified it quite quickly.  Again Dr F, always near with the 2 nurses who are amazing - even though the English isn't there I could feel their eyes looking after me. 

Always there!

Getting hooked up

Stem cells being extracted on left

Stem cells being injected

Still going

Empty bag!

Headache was quite bad at the end and I just wanted to curl up and go to sleep and so that's what I did for quite sometime once I got the go ahead.

Party Time - well, I'm not sure I would call it quite that but the tradition is to go out in the hall and celebrate and throw the liquid nitrogen and I wanted to make sure I got to do that with Matt and celebrate our "New Life" together.  Also another lovely Russian girl was there to celebrate her birthday with us as well.  Matt's brother, Bryn bought in a beautiful cake to celebrate - only wish I could feel up to eating it.  It was very emotional all round and this is what we are here for, words I cannot possibly begin to express (hence the extra babbling that usual).

Dr F gives his birthday speech

Ice bucket challenge of a different kind!

Cutting the cake

My treat was a big Caramello Koala from Sam - saved up in the fridge for isolation!

Lots of photos and big hugs all round. how can I possibly begin to thank Dr Fedorenko for giving me this opportunity to be here and also Anastasia for her amazing support.  And to all the staff at this amazing hospital, they are all so professional and look after us so well.

Now its a waiting game.  We will have our bloods taken each day until our white cell count (leukocytes) drops below 0.5.  Once that's the case I no longer have an immune system and my 7-10 days in isolation begins!

Back to bed