It's not easy but Life's Great!

Thursday 11th December

Day 0+56

Today is 8 weeks since I had my stem cell transplant – I can’t believe it, where has the time gone!  The saying “time flies” doesn’t always feel like it but when you look back I think we often say “where did that time go”.   I was accepted by Dr Fedorenko for treatment in March (the day before my birthday – best birthday present ever!!) and I was so excited, grateful and full of hope but at the same time I wanted to go as soon as I could and 6 months seemed like such a long time to wait..  In hindsight of course it wasn’t because it gave me plenty of time to prepare myself and my family and of course all of a sudden the time came and we were like “where did the last 6 months go”.   I knew, not long after I accepted, that I was blessed with such a short waiting time as the waiting time has now become much longer.  I hope this “time flies” for those eagerly waiting to go.

It’s been 16 days since I last blogged and I’m trying to find a word to describe the time and it’s just not coming to me.  Basically there a good days and there are not so good days...  During this time I think the steroids have finished their job in my body and that made me crash a bit but now it’s up to me and my new stem cells to get the job done.  I’ve had days where I haven’t wanted to get out of bed and cried at anything and everything to days where I’ve cooked and been on the treadmill.  Yes, I think roller coaster is the best description of what has been happening!  HSCT was tough to go through both physically and emotionally, that hasn’t stopped since being home it’s still physically and emotionally challenging and will be for some time – good thing I’m up for the Challenge!

We saw my Haematologist last week (actually we saw a fill in one as mine is in the US at a conference but he’ll be back to see me before Christmas) and he is happy with the way my blood work is tracking which is great.  I still have this mass under my chin and I was also worried about my thyroid.  Of course I’d already diagnosed the thyroid issue myself through Google and take note, don’t look up images of thyroid problems as there are some scary pictures to see!  Anyway, he said it is slightly enlarged so best to have an ultrasound on the chin and throat.  The mass under the chin is nothing sinister, just need to wait for it to go down and the thyroid still needs some additional investigation through bloods so will find out how that’s functioning when I next see him.
I know I mentioned last time about my foot flexing better but not sure if I mentioned my leg raise??  I used to have extreme trouble lifting my right leg and could only raise it about 10cm off the ground and even that was extremely hard.  One day I walked to the bathroom and without thinking raised my legs higher than walking height and the right obeyed, so surprised, and couldn’t wait to show off to the family.  I think there may have been a few tears all around!!  Little steps will hopefully lead to leaps and bounds!!

Off to the physio

I’ve been to my Physio and she was impressed with the couple of things that have improved already and has given me some exercises to do at home.  I find it a bit hard to do every day, not so much the exercises but due to still struggling with being tired and emotional but I’m doing the best I can.  Walking was something that she wanted me to do each day and it’s not something I’ve not been good at in the past, also her preference was outside.  Well that’s been a bit difficult as it’s so hot here and I also can’t be out in the sun due to chemo and medication I’m on.  I have though had a go at the treadmill a few times and yesterday made it to 1.3km, it was slow and steady but I was very proud of myself for doing it!


Couldn’t quite finish this yesterday as I got distracted and then I did too much and crashed out so now it’s actually Friday - Day 0+57...

This week I had my first visit to my Neurologist since I’ve been home.  He was supportive of me going to Moscow and was very interested to see me home.  I guess I was thinking he would only be interesting in how I was going from the neuro side of things (if that makes sense) but he wanted know all about how the treatment went and what the hospital was like, he also looked over my blood work and he noticed my thyroid was enlarged.  We also had a chat to him about how to go about find a rehab specialist and he is going to make some ‘calls’ for me.  Overall another great visit – Feeling very blessed with the specialists who are looking after me..  And of course the one, Dr Fedorenko, who made it happen for me!

We’ve still kept to ourselves mostly and I haven’t ventured out much, just visits to the doctors, physio, wig shopping (oh yes I did!) and I also managed to go to a school event as our son was receiving an award (but I nearly fell over from exhaustion by the end of the evening and it only went for 1 ½ hours!). We have started having some visitors which has been lovely although I still get quite tired and have some pain in my sternum so with that and my thyroid issue which seems to get aggravated when I talk too much I can only really manage visitors for an hour.  I also struggle with noise and  to many people talking at once so that kind of limits any parties at our place for Christmas!

Well I think I’ve hit the wall for another day and probably babbled on again too much..  Even though this is hard and I get upset and frustrated some days I’m still Positive.  We can see improvement in some areas which is amazing! 

Life’s good, no I should say
Life's great !!

xx

Not the greatest week...

Tuesday 25th November

Day 0+40

I’m sure I probably said last time I posted that I can’t believe it’s been a month since my transplant, well today I say I can’t believe it’s been 40 days!! 
Haven’t really felt like writing lately, in fact I haven’t really felt like doing much in the way of electronics full stop which is a big call for me as I’ve been slightly addicted in the last 8 months.  Yes, you will have still noticed my presence I’m sure but probably up until today the last week have been a quick look and a quick comment here and there.  I’m also not good on the phone either, it seems to take it out of me to concentrate on a phone call and crowds.... well I don’t know how I would cope in a crowd at the moment – when everyone’s home at the once, which is only 6 people, I have a hard time keeping up with the conversations and the noise. I’m constantly telling everyone to stop, “one at a time please!”

The last week has probably been my worst week home so far. 

It started quite well with a visit to my Haematologist last Monday and the visit went really well.  We are lucky he is such a patient man as Paul and I have a bit of a meeting before we go and he lists all our questions on his iPad. The list was quite extensive this week, so as I said we are lucky he is patient.  Before we went in to see him we were sent for blood tests, which is just down the hall, and by the time we went in for our appointment he already had the results in front of him.  He was happy with them all, only one area was a bit low but he said that is very normal for this time in my recovery.  I have a nice lump under my chin that I was worried about (gives me a lovely double chin which fits in perfectly with the extra cheeks I have which I’m hoping is still from steroids and of course that just makes me look gorgeous with the bald head!)  Anyway of course I digress as usual – he said the lump under my chin is fluid in my saliva gland and that is quite normal.  Not attractive but at least it’s not problem so that’s a positive!!  Since I haven’t figured out my scarf/hat wearing and what I like, I decided to go with the bald look to the doctors – looked fine considering the mask and the aviators covered up most of my face!! 

Quick visit to the Dr - in disguise!

Oh and we caught up with a new friend who was waiting at the doctor’s, she is heading to Russia next year so that was unexpected and it was lovely to catch up for a quick chat..

From there the week went downhill.  I had a headache Tuesday and Wednesday which also came with a fuzzy thick head (which happens from time to time) but in conjunction with the headache was quite horrible – time to stay in bed.  My head often feels quite weird and seems to have trouble regulating temperature. Dr said this is quite normal as well.  The heats not helping at all of course, it’s quite hot here in Queensland so the air-con needs to go on quite early for me to be able to be out in the living area.  It doesn’t feel like MS fatigue and or flares that I need the air-con, it’s more the post HSCT symptoms are aggravated – not sure if that makes sense or not ?? 

I’m more tired at the moment, wondering if that may be because the steroids are gradually wearing off.  Hopefully that will help with me sleeping better, fingers crossed, as I’m still quite the restless sleeper and poor Paul is still in the study which he has now started calling his bedroom!
I’ve been quite emotional since being home and I cry quite easily but along with the tired especially come the tears and often, on those days and it can be all sorts of simple things that set me off to me thinking more than I probably should that can make it worse.  On Tuesday, when I had the headache, Belle came home with a present from a friend of mine which really set me off, actually I think it brought tears to most of our eyes.  I shall attach a photo and you will see why..  Thanks Rache & Clay, we just love it xx

So thoughtful - Thanks Rache & Clay!

Paul’s gone back to work at the office which I didn’t like very much but only because I was a bit addicted to having him with me all the time not because I needed him at home as Mum and Dad continue to look after us, which is just priceless and we love them for it!  We finally convinced Dad to come back and live with us and bring the cat as it’s not the same without him here..

Kids have 2 more weeks at school and I can’t wait to say “SCHOOL’S OUT FOR SUMMER”..  - hope you sung it in you head!!!

And Christmas is now exactly a month away – thank goodness for internet shopping!!  No Paul, don’t go and look at the visa bill just yet!!

Hoping to have a better week this week and hopefully start Physio which reminds me I better go and call them... 

Thank you as always for your messages of support and I’m sorry I’m not in contact much but I just have to ride this roller coaster as best I can xx

It's 1 month today since my transplant!

Sunday 16th November 2014

Day 0+31

I thought it would be easy writing a weekly update but I think it was actually easier writing every 1-2 days when I was in Moscow as it was much clearer in my head what had happened.  Writing about a whole week is a bit harder, although if I wrote about each day now that I'm back home it would probably bore everyone to tears as there is not that much happening day to day at the moment!

So today is a very exciting day I think, well for me - it's exactly 1 month since I had my transplant!!  How fast has the time gone....  I mean really, I can't believe that this time a month ago I was anxiously (and I mean anxiously) waiting for 1pm to come, I remember it being a very long morning and I remember being quite scared, of the unknown I guess.  I knew it wasn't dangerous, but I just didn't know how it was going to feel during the transplant, now I know and it didn't feel good - for me anyway, others have breezed through it - but I'd do it all again as this is exactly where I want to be now!  Moving on with life with and kicking MS to the curb!!  Happy "One Month" Birthday Matt!!

Sleep is a huge thing for me at the moment.  I need it but "I just can't get no satisfaction" - it's just not happening when it should and I just can't get into any sort of good rhythm, so annoying!  Blame it on the steroids!!  Or maybe the other million things happening in my body at the moment!  Or maybe, and I got this idea from my lovely friend Irene, my stems might be dancing in the night to find their right place and do their job!!  Then that's okay I'm happy for the disturbed sleep!

Monday 5am (I wrote some notes) – I’m not sure if I’m waking up at this time because I genuinely can’t sleep or because I know Seb will be already out there in the lounge room, he's an early bird! and I like to be with the kids before they go to school...

FitBit

I think my MS fatigue has lifted somewhat.  I’m still tired, don’t get me wrong but I think that’s tired from steroids/chemo/transplant/Moscow/30 days in hospital, bad sleeping pattern tired.  I’m not sure I’m feeling the complete body emotional meltdown fatigue that I would usually feel with MS.  I’m also not sleeping as much overnight as I would pre treatment.  And I really know, because Paul bought me a FitBit.  He has wanted to buy me one for some time and it’s a pity we didn’t have one before I went to Moscow because then we’d be really able to compare sleep patterns from before treatment.

The FitBit shows how much you slept a night but it also shows the periods of awake and restless times and graphs them.  I’ve been a restless sleeper for some time now mainly due to the way my body would feel during the night with my MS, even though I was extremely tired I would struggle to sleep as my legs would ache and I would never be able to get comfortable.  Which makes me just think – I’m not having long nights sleep at the moment and I wouldn’t say I’m completely comfortable, it’s hard to roll from side to side as my legs are weak, weak from treatment and still MS issues but, yes there is a but, or ‘light bulb’ moment as Seb would say!  I don’t think they seem to ache as much anymore at night..  That is a big ‘light bulb’ moment actually.  You know I genuinely have these while I’m writing (sorry babbling).. 


Couldn't do this without my family, especially Mum

The above was written on Monday and the sleeping hasn't really gotten much better other than I have managed to sleep a little longer overnight the last 2 nights but I'm still restless - and it has gotten bad enough that Paul's moved out onto a blow up mattress in the study.  He slept better there for 1 night, not so much the 2nd night and then he traded beds with Sebastien, I'm not sure who's idea it was but I think Seb liked the novelty of sleeping on the blow up and Paul got a better mattress and air conditioner with Seb's bed!  Seb announces this morning though he is going back to his bed as he's sleeping in too late on the blowup and needs to be up early on school days or he'll never be ready on time!!  Think we need to go buy a spare mattress!!  The other irony is though when I'm ready to fall asleep it's like okay I'm tired now and then I'm asleep instantly..  Seb and I were watching Godzilla Friday night, loud, in the bedroom and when Paul and Belle came in they couldn't believe I was sound asleep while Seb was still watching!  Note - Really enjoyed watching Godzilla (the latest one), love movies that I can enjoy watching with the kids.  Also watched Divergent with Belle yesterday, that was really good as well!

Thanks Jane for letting me use your mantra!

Bit annoyed that I won't be able to go to the cinema over the next couple of months as there are some good movies coming out!  Paul says maybe in another month it would be okay, mask up, but I'm now a germ freak and couldn't imagine sitting in a cinema on a seat that many have sat before and surrounded by people that could have who knows what!  I know that sounds terrible but I have this beautiful new immune system that I need to preserve and I don't want anything to compromise it so please bear with me being OCD about hygiene for the next few months (at least!). 

I'm a bit obsessed with clothing at the moment - which will come as no surprise to some of you! but it's a different sort of obsession.  Since I've had chemo and also because of a particular medication I'm taking I need to be even more careful of the sun than I otherwise would be.  So I guess when I'm ready to go out in the big wide world what do I wear in the Queensland summer when I would normally wear rather strappy dresses!  Luckily Mum's been looking after me and has bought me some lovely dresses to cover me up a bit more than I usually would, very spoilt I am!  I've also added a couple of scarves and a cardi I can wear with current maxi's so I should be good..  I've hinted that a couple of Camilla Katfan's in the Santa sack would be fine but I'm pretty sure I've probably got my fair share recently that I'm being a little bit cheeky with that request!!

The other thing I'm struggling with is getting used to my bald head, I may have already mentioned this but every time I walk in the bathroom I get a shock.  It's funny that I didn't feel this way at all in Moscow but maybe it's more real being home and in normal clothing again.  I don't have a problem with being bald, I'm very proud of what I've done and why I am bald but it's still something to get used to.  It's not as shiny bald as I thought it would be it has this kind of light fuzz covering so maybe I won't be so bald for long, maybe that's a sign that it's starting to grow already but I really have no idea..  and I'm fine at home, it's going out that I'm thinking about again and I don't want people to look at me and feel sorry for me because I'm so proud of what I've been through!  Hope that makes sense??  I have some little caps that I wear and they look okay but they get hot and it's pretty dam hot here in Brisbane at the moment.  I've been thinking about buying a wig but can't make a decision on that, not that I've been shopping for one yet so maybe I'll go and try one on and see how I feel.  Problem with that though is the good ones are quite expensive and again living in Queensland not sure how much I would wear it as they get quite hot as well - and you know that money could be much better spent on that Camilla Kaftan if you think about it!!  I am actually awaiting delivery on a scarf which I'm hoping will look great on my head, fingers crossed for me please!  Belle hasn't liked anything I've tried on my head as yet, she thinks I should just rock the bald look.  Oh and note to anyone who's heading for treatment - if you have bought any caps/scarves and tried them on now while you still have hair (like I did) and they look good, the whole look changes once you are actually bald and don't have any of that padding underneath!

Nice to be outside

I haven't been outside much this week except for the occasional jaunt onto the back deck so we decided to go for a walk, well me in the wheelchair, on Friday night.  We all went, kids, Mum, Dad and dogs included.  It was lovely to go for a wheel (can't really say walk) around the streets - we live in a beautiful tree lined neighbourhood with big wide streets,  there are quite a few Poinciana trees around and they are in bloom and are just gorgeous.  It was lovely to be out in the fresh air (even though I had a mask on) - not sure it was such a lovely walk for Paul since he had to push me and although our streets are lovely the camber on the sides is quite bad so it's not an easy push and I'm not a dainty size girl!!

Mostly still just resting this week and eating very well with all the good cooks in the house.  Looks like there will be a cook off at Christmas time when my niece arrives which will be fun (to watch and to eat the spoils!)..

No noticeable improvements to report this week but then none expected as this first month is about resting and getting my strength back.  I did decide this morning that I felt I needed to stretch my legs a bit more so I did 3 sets of stairs with Paul and maybe I'll try and do that morning and afternoon.  It was tiring but I was able to do it which is a great start..

Pressies!

Isabelle's just come home from the shops and brought me a couple of presents.  A bell, which I've asking for, for when I'm resting in the bedroom and need someone's attention - Paul's eyes rolled at the sight of it!  And she also brought me a comb for my growing hair - so thoughtful!!

I'm sure I've missed a million other things that happened this week, maybe I should take notes each day, but I think I've again probably gone on long enough for now..

Thank you for all your lovely messages, I love getting them and I'm sorry if I don't reply to them all individually but I really so appreciate receiving them.  We are still keeping to ourselves quite a bit as it's just the way we need to be at the moment but that will get better as the weeks go by and I get Stronger and Stronger!  

There's no place like Home!

Sunday 9th November 2014

Day 0+24

Okay, where do I start!  I thought I'd do an update each week of where I am at, both for myself and in case anyone else is interested in how I'm doing.  I also thought these would probably be brief updates but I already have a million things running through my head as to what has happened in this 1st week home that I may go on a little bit more than expected, for that I'm sorry!!  No I'm not really, I think I've finally come to terms with the fact that I like babbling away my thoughts in writing, that only took me 30 days to figure out!

We landed home last Friday morning - great flight home, love Emirates and love flying Business Class, OMG it's amazing, not sure when I'll get to do that again but I kind of think I deserved it under the circumstances!  On all of the trip we had used 'wheelchair assistance' since it's too hard for me to walk very far at a time.  Everywhere was amazing except when we landed in Australia, no wheelchair waiting - not happy, exhausted, had to wait about 15 minutes for one to arrive (long time for me standing) and I was not in a good way.  Wheelchair arrived and the ladies were lovely and swept us away down to passport control and thankfully into the "fast" lane (wheelchair/crew) - although not so fast lane as it still took about 1/2 hour, I was feeling good at the end of the flight but not good now,  I'm feeling like I'm going down hill fast.  There's seems to be no air-conditioning on, I'm hat on, mask on, hot, people everywhere, and I can hear them coughing - get me out of here!!  And of course I'm getting more excited about seeing the kids as I know they are just through that door way over there, hurry up and get me there!!  The security staff finally get us through passport control customs, help collect our bags and through customs quickly and we're through the doors and there is our family - the kids run over, lots of tears everywhere, quick hugs with the kids and Mum & Dad, but no time to stop, the Emirates driver is there and ready to whisk us away so the kids come with us and Mum and Dad head off to meet us at home.  Thank goodness we live where we live, within 15 minutes we are home - now I can give everyone a really big cuddle!! Have I mentioned yet how much I love being home.

The kids had the day off school which was lovely although they did have to duck out as they both had music examinations.  Worked out quite well as Mum and Dad were fully organised to take them of course and it gave Paul and I a chance to have a sleep.  I zonked out pretty quick for about 2 hours and woke up with extreme pain in my knees, nothing I'd had before and I could hardly move.  Called out for help to no avail, Paul was OUT to it, thought I must have been left alone, I was sure he wouldn't have gone out..  Finally got his attention, of course he was just as exhausted as me.  Not sure where that pain came from but it made it difficult (more than usual) to walk for about the next 24 hours as it gradually reduced.  Haven't had it again thank goodness.

Sorry, this could go on and on if I only do this weekly and tell everything about my whole week!  Can't stop me once I start!

We have a lovely big chair in our lounge room and this has become my base.  It's in the perfect place as I'm part of the lounge room, kitchen, dining room and can interact with the whole family and be really comfortable which includes falling asleep at any given moment at times as well.  I've set myself up with everything I need around me and at any time that I need something as soon as I move Paul, Mum or Dad are on to it! Sometimes I do retreat to the bedroom if I need quiet and to get horizontal but I have no complaints there.  While we were away Mum and Dad did a million and one things to make sure the house was clean and ready for which we are so, so very grateful and included in this was quite a lot of work to our bedroom - it feels like a brand new room, so very comfortable and peaceful, I just love it!!  

Cuddles with my boy

Even though I can't do much at the moment, which is fine as rest and recovery is what I need, it's so nice to be around the normal daily routine of home.  I'm awake to see the kids in the morning, Mum is getting them ready but I can still be here to talk to them.  Can't get enough cuddles from the kids, 5 weeks was a long time to be away from them.  Sebastien kisses me at any opportunity he can.  They are being so good with the cleanliness, washing their hands diligently and as soon as they get home from school they change their clothes and wash up and then straight to see me for a cuddle and tell me about their day.

Mum is living here all the time which is great as we couldn't do this without her.  Dad was as well but their cat didn't cope in the cattery so Dad now comes for most of the day but goes home at night, we miss him at night but we can't have the cat here so the cat needs him too!!.  We are so very lucky to have them here as they do all the running around for the kids and although Paul's had this week off to settle me in he will start to work more next week from home and then be back to the office the week after.  

Did someone order room service!

Food - haven't stopped eating since I've been home, I mean a lot of eating.  I have to careful of what foods I eat, you could compare it to how you would eat while pregnant with a few more restrictions on top of that - there's no way I want to get any kind of food poisoning as it could be life threatening.  No eating out for me for a while and definitely no take out - really good home cooked food is the best thing for me and I am getting that in bucketfuls!  Paul has been cooking up a storm and has found he likes "The Thermomix"!!  he's made a myriad of things and he's a really good cook.  Mum also finally gave it a go and made a mean mushroom risotto and Dad's keeping me in scrambled eggs and he makes a mean cheese omelette!  Best I not rest on my laurels too long before I start physio or I won't be able to get off my comfy chair!!

Birthday time!

We celebrated Paul's birthday on Friday and although I think he had a nice day I think we need to make another Paul's birthday day since it's basically all about me in this house.  Of course I hadn't been able to do anything for him but he did somehow manage to get a beautiful new camera appear which he was very happy with - Isabelle & Seb must have nicked out to the shops with their credit card - very sneaky of them and they picked exactly the one he wanted!! 

Best I put in a "Health Update" I guess since this is really what this is all about!  I'm not sure how much I've said about this before, I know I've mentioned some.  The expectation is that the HSCT will Halt my MS and any additional improvements will be a bonus but in addition to that it can take anything from 6 months - 2 years to see the full benefit.  Also during the 2 years it will or can be a roller coaster basically of ups and downs on how we will see improvements.  We have great hopes of improvement and with our "Good Mood, Good Food and Good Rehabilitation" I'm sure we'll see it happen - just might take some time!! 

Currently it's all about resting and recovering for at least the first month.  Might do a little bit of light something but it won't be much, will make contact with the physio next week to come up with a plan of what and when to start.  I've been to see my Haematologist here in Brisbane this week who will look after me post treatment.  I will still see my Neurologist in a few months but it is the Haematologist who will be my main specialist now.  We are really happy with the one we have been able to get into, he does Stem Cell Transplants for Cancer Patients so understands my transplant completely.  He took blood work following the appointment and his secretary called within the hour to say the doctor was very happy that all my blood work is on track - great news to hear!

I'm also staying basically "housebound" for at least the first month.  No visitors to the house and I'll only go out to appointments if necessary and when I do I'll be wearing a mask to risk any chance of infection.  My immune system is compromised and will be for some time and we don't want to take any chances with this new opportunity.



One thing of note that I didn't write above about my health and I'm a bit hesitant to as I did say that things will be a roller coaster but I think I just have to say.....  my right foot basically has what you'd call 'foot drop' - hard to lift and doesn't do what it's told..  So when I sit on the couch with my legs straight out in front it usually just droops to the side, it's quite hard to hold up and keep straight, it is also extremely hard to flex towards me without a huge amount of effort - well it seems that it's not so droopy anymore and I can hold it up straight more easily and I can even flex it toward me with some effort !!  I'm not sure if this sounds significant in the way I'm writing it but it is of huge significance to me...  I hope it's real, I'm excited but trying not to be too excited, one of those weird feelings - lets just hope it's a good sign, I'm sure it is!!

Still can't stop watching the Gilmore Girls, think I got addicted in ISO.  Also think it's my safe show, lots of things not inappropriate if kids come in!  Anyone watch "Girls" - love it, very inappropriate, especially if your Dad walks in!  Loving catching up on shows I couldn't get, Wonderland, The Goodwife is back on and has anyone watched Madam Secretary, it's really good!!  Good thing I love TV hey- easily occupied!!

I'm sure a lot more went on this week and I could probably keep going but I think I've covered the most significant bits - time now for some of that chocolate cake Mum bought Paul for his birthday, it is good, I'm sure I can fit it in somewhere!!

Last Days here in Moscow!

Day 30

Day (0+12)

Strange day to wake up and think that this is I really the last full day here at Pirogov Hospital. 

I'm out of ISO, the only to do is to have my neck catheter removed (or those tentacles of accessories I have come so attached to), start the packing process and relax.  Of course I cannot relax, to many things of course racing though the brain, it must be a midfield in there sometimes, so much room for things to rattle around.  Am I ready to leave, I feel so safe here, it feels like I'm heading back out into the big wide world.  I remember when I had Isabelle, she took her time coming out (although perfect that she came), and I never the left the hospital for days and when we did, it was that surreal moment..  Maybe exaggerating here but of course that's what I do!

Matt messages me and he's had his line out, woohoo!.  One of my favourite nurses, Gala, whom I'll never forget comes in and tells me in Russian to lie down and it's my turn.  She's so gentle and it's easily out, I reach out and she gives me a little hug, I think I see tears, (definitely tears from me) I'm sure I was a good patient for her, she was so good to me.

Matt says goodbye to Dr F - thanks to Bill for the T-shirts

Matt, me, Anastasia and Bryn

Matt's leaving today.  We've been here the whole time together.  I'm so excited for him to be going home but I'm going to miss him..  It's weird you know.  Matt's girlfriend Laura was here with his brother Bryn and they spent lots of time with Paul and got along famously, spending actual physical time together, dinners, travel, emotional I'm sure, it's so good to have this carers support for each other.  Matt and I on the other hand really didn't spend time together as such in the same space but were next door all the time, chatting a lot using messaging and comparing things all the time.  It's amazing how you feel you have this link through your exact HSCT experience and I think we'll have it for a lifetime..  Can't wait to see them again when we are fit and healthy.  Lot's of tears when they left..  Happy happy tears when they left, I'm so excited for their future as much as my own.

So now you can tell that I had finally ventured out of my room and into the corridor, it felt good to see people again..

Me & fellow HSCT patient Fred

An influx of patients quickly came up through the corridors as they were all on their way up for their first jugular catheter..  Lots of mixed emotions going around, I do remember those feelings.  It's not a fun thing but I can now look back that it wasn't that bad.  I finally got to meet them all, Bill, Fred, Ansh, (on their path together) along with Debbie and Karan for support, they are all a few weeks behind me but all so ready for their journey as well.  They will support each other well, you could tell already.  Paul of course already knows him and they love him already, who couldn't x 

Sleepy afternoon for me, so Paul heads out, he still had some photo's to get apparently - he's loved documenting the whole experience.   And one more big adventure for me today - I venture outside!!  I haven't been outside for maybe 14 days, I can't remember really.  Rug up but Paul says it's not that cold, well after being snug in my bed for so long it was a little chilly for me I can tell you.  We do a wheelchair run as I'm not sure I'm quite up for walking yet, the fresh air was lovely and Paul takes me for a lovely spin around the grounds.

Finished the afternoon with a quick chat on level 2 with the guys I'd met earlier, and got to meet another Aussie Jo.  Lovely to share stories, and chocolate, love those Hershey's Karan, need to find me a supplier for those!

Better go pack now - last night sleeping at Pirogov Hospital tonight !!


Day 31

Day (0+13) 

Last Day in Moscow

This is a bit of a blur to write as I'm writing it from home now and it's a week ago and my brain is also a bit hazy at the moment as well - there is a reason I tried to write things each day.   Anyway...  The morning we needed to get packed up and leave my special room by 11am so it could be readied for another patient, Dennis, who was having his transplant today.  Hope he finds this room as lucky as me!

Wasn't sure where we were going to spend the day, and I was feeling a little anxious as our flight wasn't leaving till midnight and we were not leaving the hospital until 7pm.  Of course I had nothing to worry about, Anastasia said you must have a bed to rest in my dear and had organised one for me in Ansh's room, I felt a little intrusive but Ansh made me feel very welcome.

We had a meeting with Dr Fedorenko to go through everything.  Treatment, results, he is very happy with where all my blood work is at, aftercare instructions and he wants to make sure we give him and Anastasia updates on my progress.  Hugs and lots of tears from me, I can't thank this man enough.  He has been amazing, professional and he has such a caring, endearing way about him that you just feel so very cared for.


Dennis - entertaining the crowd!

After this we were lucky enough to go back up to level 3 and enjoy one last "New Life" party for Dennis.  Dennis has a real energy about him that just seems to fill the air with positivity - it was a pleasure to be able to be a part of his celebration!

Popped on gowns for one last time so we could pop into ISO rooms and say goodbye to Felicity, Bjorn and Prue.  Yelling through the doors not easy but so nice to be able to say goodbye and wish them well - we'll be keeping in touch!

Final chats with our friends downstairs, we've been so blessed to meet such nice people here from all around the world and we look forward to keeping in touch with them - such a special experience we have gone through together even though at different stages.


The HSCT gang continues on

Time to get organised to go to the airport, Anastasia, how can I possibly say goodbye to you - she decides to come for a ride to the airport so lucky me, no tears yet!

Car arrives at 7pm and we pack up ready for our 2 hour(ish) drive to the airport.  I think Paul sleeps a fair bit of the way. I love listening to Alexander and Anastasia talk and laugh in Russian on the drive.  We have a pretty good run except for a truck that's really not keen on letting us in so gives the side mirror a bit of a swipe, they drive pretty close at times!  Parking at the airport is interesting but Alexander is an expert, bags out quick and Anastasia helps me walk in and Alexander sweet talks a security lady into giving us a wheelchair at the front door and they sweep us off to find Emirates check in.  They need to head off pretty quick because of the car which is a good thing as it's a quick hug with Anastasia, no time for too many tears, we'll be back to see her again some day xx


Saying goodbye to the beautiful Anastasia

Emirates organise us quickly and assist us to the lounge and now we are ready and waiting - Midnight hurry up and come!

We're coming home, We're coming home - I'm so very excited to see Isabelle, Sebastien, Mum and Dad.

MOSCOW - how can we thank you for having us!!  We are so very grateful that you allowed us to come here for my treatment and we hope to come back one day so we can see this beautiful city properly xxx 

And when I come back I will walk the Red Square from corner to corner and go in everywhere !!! 

GOODBYE MS - YOU ARE NOT COMING HOME WITH ME AND YOU WILL NOT BE COMING BACK WITH ME !!

Engraftment and Rituximab - but will I venture out of my bubble room yet??

Disclaimer - I'm writing this catch up on Tuesday morning at 1am, not sure why I'm not asleep but the sleep is not coming and why not use my time to ramble away the last couple of days - things as you know may go haywire!

Day 28
(Sunday)

(Day 0+10) -  ISO day 9 - OR NOT!

Today came with a bit of trepidation.  Bloods and Fluids are given early before breakfast, it's Sunday today so not sure if results will come back as quick as usual.  Now 9 days into ISO I was feeling a bit behind the eight ball I guess, my predecessors of recent weeks had seem to be able to be out in 7 days (ish) and I was feeling like I just wasn't there yet.  Don't get me wrong, I wasn't actually worried, I knew my body needed to do this journey in it's own good time and my stem cells were working their way into just the right places that they needed to be.  Fortunately for me I was also quite happy being in ISO, I was really quite comfortable, Dr F checking in everyday and the nurses looking after me and of course food delivered, room cleaned, clean sheets and vodka baths (what else does a girl need).  I hadn't felt any significant pain, sweats, temps, skin a bit dried out (like a fish) but rectified with the smart purchase Garnier crème in Russian by my husband he hits the nail on the head first time!..  No doubts that I'm in the right place and things are happening.  My body just felt like it was resting and maintaining it's inner peace, taking it's own time to allow all these amazing stem cells to find their place, latch on and reboost me into the world!  (was that a little too much - maybe!)

Didn't have to wait to long, when Dr F, arrived I was on FaceTime to the kids and mum & dad at home..  They just want to tell him how much they love him and how happy they are he is here - Dr F indulges, lovely but it's all about the numbers and they are "fantastic"..  My Leukocytes are finally up to 1.9 and he says that you have "Engraftment" - the magic word, lots of tears, this is it - he says "your husband can come and hug you today", more tears, thank you, thank you, how can I ever show my appreciation at being here.  Dr Fedorenko will be in my heart forever!

Tears and more tears, say goodbye to home so I can find Paul..  He didn't come into ISO day as not much point standing at the door but now I need him quick - I'd been talking to him on and off all morning but now where is he, not answering me quick enough - at breakfast...  me through streaming tears gives him a well undeserved hard time for not being exactly where he should be at the exact point he should be - sorry babe, that was completely uncalled for and should be stricken from the memory board of emotionally uncontrolled wife behaviour - sorry to let you all down but occasionally I'm not quite perfect!  Of course he is ecstatic and off to come and give me my big teary/happy hug that I need.  It's probably not quite the embrace that a good love story can show considering Paul's still got to be dressed up in his complete coat, hat, face mask etc..

After 9 days of separation - back together!

But now we get to spend the day in the room together which is lovely "to be actually in the same room together".  I'm not ready to venture out of my bubble ISO room to the hall just yet, I still want that magic number to come over the 2.0, hopefully tomorrow.  Matt comes in for a chat as he got out of ISO yesterday and his numbers are fantastic.  I'm sure we've said this before but we've been so blessed to go through this process with our UK buddies, it's so nice to go through this both as a patient and carer with someone on the exact path day by day.  They will become great friends for life (well we hope they do, that's if they actually liked us too I guess?)

Paul having dinner with friends at Chips restaurant

Paul has special plans for dinner tonight with some mutual business associates and sounds like he's going somewhere special for dinner, he deserves it!.  Think he needs to insert yummy photo food photo's here, looked amazing - no grudge from me in here, he has done nothing more than run after me, work, when able and run after me and help out a myriad of newcomers as well.  And... unbeknownst to me he also had another plan of surprise for me to come.....


Day 29
(Monday)

Day (0+11) - not ISO but still hiding out...

Daylight savings came today in Moscow and do you think I could possibly manage my lovely bald head around that one..  Considering I sleep sporadically, I'm always looking at what time it is at home, my brain only does the pure basics at the moment, this one just threw me for a 6!

We have lift-off!

Bloods and a small flush this morning in preparation.  Dr Fedorenko has great numbers for me - My Leukocytes are now 5.89 - how amazing is that, they have just rocketed overnight and "I'm so excited".  Dr F says that yes we will do your Rituximab and Steroid infusion today which is again, "so exciting".. 

Anastasia has been away for a couple of days so I get a big cuddle from her, she has been such a treasure here for me whenever I've needed her.  She says all good to start the Rituximab around lunchtime although in comes one of my favourite nurses Gala to get me started at 11.30am..  Luckily I'd had a quick shower, popped on a Tena for a 5 hour sitting (just in case), propped up the digitals and I'm ready for it!  Good note that I was allowed up and down so Tena not needed although always good for back up!

My last infusion - almost there!

!
This is a huge part in finishing here as it's the last of the treatment process.  Dr Fedorenko said he included an antihistamine (I think it was) just in case and I think I just floated off into fairy land.  It was quite lovely for the afternoon.  sleep, float, eat, bit of TV.. 

Bolshoi (centre) & TSUM (on right)

Paul arrives (after his last market dash shopping for me, what a man)!  I mentioned before he had another surprise from the night before which I had no clue.  See he had figured dinner was conveniently located back near the Swarovski store (inside the exclusive TSUM shopping centre) and he went back and bought me the most divine earrings and oh my goodness these are gorgeous - I'm not sure I'm deserving but he beams with pride at how strong I am, how proud he is, this is about us and our family and that is why I am doing this he says, for all of us xx.  

Paul came in and out and checked up on me all day not that I was very entertaining at all.  Also, Dr Fedorenko popped his head in to make sure I was happy along with the nurses constantly.


So happy - I'm done!

Finally finished around 6pm I think.  Paul and I felt in a somewhat state of shock I think once it was over..  It feels like we've done it - so proud of what we've achieved here together.  Love and Support is everything, I can't wait to bring on the next phase and recover at home and see my family!  My kids, my mum and dad, my friends, we miss you!!

We're coming home xx

Time for Paul to go and have his last dinner with Bryn (Matt's brother), I'm sure they'll have a great last catch up!  It's been so great they've had support - not easy supporting a loved one in this situation I'm sure and they've both been amazing.

A little bit (or lot) of Random thoughts!!

As I start to write my little heading dates below I feel like I'm confusing myself as to where I'm up to in the process so this little bit of info is to get it right in my head just as much as anyone else's!

The Day 26 (below) is day 26 since my arrival at Pirogov Hospital and the official beginning of my stay at this magnificent place..  When I write (Day 0+8), that's 8 days since my Transplant Date / New Life Birthday, again I clarify this in my own head..  ISO speaks for itself I think, that's how many days I've been isolated to keep me safe from infection.

Day 26
Friday

(Day 0+8) - ISO day 7

Day 27
Saturday

(Day 0+9) -ISO - day 8


Think we'll just go for a whole two for one today as I'm not sure I can remember enough about the 2 days separately with significance and it may then turn out to be the most boring post I've done thus far, until the mind doeth wander which as you well know it occasionally does!

Actually - better update as I had the platelet infusion the night before the 26th day which I may have left you hanging in the balance...  No big deal, nothing to worry about, all very good Dr Fedorenko said and this will also help my platelets get moving in the right direction.

All things good in ISO.  Morning fusions, bloods, breakfast, vodka bath, clean sheets. 

Dr Fedorenko is still happy with my blood work.  My Leukocytes are not quite there for me to come out of Isolation just yet but he's happy they are heading in the right direction.  Maybe tomorrow you can hug you husband I think, he says!!..  He always come in and shakes both my hands, with his caring smile and eyes to make you feel at ease.

Blood work is starting to move in the right direction

An addition though that has definitely been happening big time is the hair loss, lots of it, have many bald patches on my head now..  Thanks Mum & Dad for providing me with a reasonably round head so hopefully I won't look too scary as a bald person, think I may have a nice scar on the back of my head from falling from a swing as a little girl (remember mum!) - not that I'm worried about it at all, it's all for the greater good (except I may regret that when I walk out into the Russian cold before I leave - big beanie required for that transport).

Hey Baby!

The hours while away quite easily.  I thought I'd watch lots of movies, tv, read but it's a different feeling.  I don't feel any pressure except to heal I guess and I don't feel the need to bog myself down into too much information...  Mum again will attest to how easily I've let them just get on with things at home.  I talk to family and friends a lot on face time which is great as it makes you still feel like you are part of normal life at home.  Love talking to the kids at dinner time as they just go about their business like I'm in the room and chatter about their day.

Starting to think a lot about going home now as it's really going to happen this week. 

Dr Fedorenko has given us such a gift of New Life and now it is up to us to make sure that we take care of that gift.  Aftercare is going to be huge but I think that when you embark on something as enormous as HSCT then your aftercare should have been just as much as an investment as well..  I've read as much as I think I can and listened to a lot of advice.  I can't and never will stop thanking Kristy Cruise for the amount of information she has provided to me and others in this area, this lady cares above and beyond for us all embarking on this journey, I mean really cares!!  There are others who also have this huge capacity of caring on special HSCT forums, the veterans with their knowledge are amazing and I'd also like to thank them for sharing their wealth of knowledge.

I have a  Haematologist to return to who will continue to undertake my care along with a very special GP and Physiotherapist and my Neurologist of 10 years who supported me will continue to monitor me as well - I am very blessed.

I'm about to have a moment.........

10 years ago I was diagnosed with MS would you believe!  You know I have to have these moments,...  is stuff I probably already told in my story..  My little girl was 3 years old. There was kindy orientation (how could I miss that) and I remember walking around in a daze not feeling my left side of my body wondering how I was going to keep a straight face and no one notice, then I had to go away to see the Neurologist, it was to be her first ballet concert that weekend.  Mum of course got her ready and organised and Paul and I made the flight back just in time to see the show she was beautiful, so tiny, I'm feeling nostalgic.  My beautiful little boy was only 6 months old..  How could this be fair..  I'm so blessed to have healthy children..  BUT - look at me now, they are amazing, we have made it though by being Strong, being Brave.  I sometimes think we take our family and friends for granted sometimes.  I have never felt so much love and strength through the past few weeks from everyone...


Missing you and couldn't do it without you xx

Man I do go on, think I need to lighten the mood a bit, maybe I shouldn't write in the early hours of the morning..

So I did watch a movie last night "The Notebook"..  I've watched it before and last time I thought "Nah" - is that a word, it just didn't quite grab me as an all time love story...  thought I'd give it another go and sorry it felt another "Nah" to me again - sorry to disappoint but..  Give me "An Officer and a Gentlemen", Titanic, Pretty Woman, oh and I am a pretty desperate 40+ year old Twilight Fan.... My favourites are definitely good old Romantic Comedies that make me laugh and cry and they always get together in the end...

Now that must be one of the most random posts of all - sorry to bore but the babble just comes out!!  ISO warning - emotions all over the place - one minute up, one minute down but as a whole is all nothing but a good thing!!

Fingers crossed I get to hug my husband tomorrow!!! xxx

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!!!