525,600 minutes - What a Year!!

16th March 2015

 

Day 0+151 (5 months)

Today - 5 months post HSCT – WooHoo!

Today - 43 years LIFE – it’s my birthday!!

1 year and 1 week ago, the 60 minutes episode aired – watching this changed my life!

1 year and 1 day ago, I received an email from Dr Fedorenko saying he would treat me!

1 year plus 1 day ago we said goodbye to my Grandmother......

I was reminded a lot last weekend by my HSCT friends that it is one year since the 60 minutes episode was aired.  How could I forget, I hadn’t of course, I still have that episode recorded on the set-top box.  It was a strange week, we were in the midst of preparing a memorial for my Grandmothers passing and in the midst of this sadness I was also filled with great excitement and hope which I had lost at the time...  What a week...  I remember seeing the ad for 60 minutes and the first one I saw didn’t say what the ‘lady had’ but I was intrigued, not usually intrigued by this sort of journalism but for some reason it struck a chord with me at the time.  A couple of days later the ad came on again but it was a longer version, I remember phoning Paul and saying “You know that lady in the ad from 60 minutes, she’s got MS, we’ve got to watch it!”..  Before the 60 minutes even aired I had found out the ladies name “Kristy Cruise” – Google stalked her (as you do), found her Moving Mountains page, which I devoured and at the same time Paul was looking for any papers he could find, and so, as soon as we’d watched the story we knew we wanted to try and do this as well..  We showed the kids the episode the next morning and Isabelle said “Oh mum, you’ve so got to do that”!!  And then the email was sent to Dr Fedorenko – Am I a candidate and what do you need from me??  The rest, as they say, is history!!  I’ve said it before but can never say it enough – Thank you Kristy Cruise xx

New hair colour

It’s been 2 months since I’ve posted a blog, I find it harder to write these days, need to get back in the rhythm...  I wrote a couple of weeks ago but it started about hair, I thought it was quite funny but now for some reason it seems a bit trivial...  Hair is hair and in the grand scheme it’s not that important but I am still a girl and us girls do love our hair!  Going through the growth stage is weird, sometimes I just wished I was bald again as it looked better than the thin growing hair, Isabelle did tell me at one stage I had a cool Mohawk – not sure if that word fits with my 43 year old self...  It’s thicker now and I have rectified it with a new blonde look, not sure how long I’ll keep it we’ll see how it grows.  I know people used to look at me funny (and I’m pretty sure feel sorry for me) as I didn’t really wear scarves out much as I was too hot.  No one looks any more except at the cool hairdo!!

I’m doing really well at the moment.  I say this in my mind with hesitation though, it’s still not easy and they say there can be temporary improvements and we won’t really know what’s real for up to 2 years.  I feel that my improvements are here to stay as where I have improved it’s been a slow increase in movement and ability not an up and down improvement but you never know and I don’t want to “count my chickens” but at the same time I want to keep it real.  I know people read this (well I think they do) who are heading for treatment and I want to make sure they understand that it is different for everyone.  I was never promised improvement by Dr Fedorenko, I was given a high probability of stabilisation (halting the progression) but since I’ve been living with the MS for 10 years he gave no probability for improvement - that would just be a BONUS!  A bonus I feel so very lucky that I seem to be getting.  I would have been happy with halting but of course I’m ecstatic that I’m improving, just don’t want to jinx it.
I’ve still been going to a Rehab program at a hospital.  It seemed to be a bit slow going but last time I went the Physiotherapist was so excited at the way I was walking.  The reason I felt it was going slow was that every time I went the Physio would basically make me walk the halls, up and down, telling me to – stop dropping my hip, squeeze my butt, heel to toe my feet and then make me exaggerate this onto my toe, slow me right down.  Anyway looks like she knows her stuff as practicing with her and then continually around the house seems to have done wonders.  My knees ache though, probably doesn’t help that I’m carrying too much weight, but the Physio said “no wonder  - your knees are in pain because you are walking properly which you probably haven’t done in a long time” which of course she’s right as I’ve been limping around dragging a foot for the past couple of years!  I can cope with the knee pain as the improved walking is amazing!!

I still have the joint pain, mainly in my hands and feet.  My sternum pain has finally gone thank goodness and my throat and neck issues also seem to have cleared up.  Still have weakness in my hands and not all of my MS symptoms have gone, but most have eased.  MS fatigue is still at bay although chemo fatigue is still here and hits me at times.  Still lots of fluid retention, my ankles have been a rare sight to be seen since Moscow, still can’t wear my wedding rings but I think it has eased a little.

Had a scare with my bloodwork a month ago, I had some extra tests due to the fluid retention and they came back with my Neutrophils really low which meant my WCC was also very low.  My GP called as she had seen a copy and basically said “do not pass go, do not collect $200, go straight to your haematologist” – she thought he may put me in hospital but we just monitored closely for the next week, checked in with Dr Fedorenko for opinion as well and they gradually came up again.  I stayed out of contact again with people, infection risk is high during this time, if I’d had a fever at all it would be straight to the ED.  We’ve got to be careful for some time yet as this seems to happen a lot during the first 12 months.  Vigilant still about being around sick people, almost went to the Rugby this past weekend but after hearing about a measles outbreak there the weekend before decided I would give it a miss!!

Riding the rollercoaster! - although this one was in LEGOLAND!

I’m feeling so very blessed that I’m doing well, I know others having a much tougher time and I hope their Roller Coaster slows down soon and goes up rather than down.  I do have some downs as well  of course but I’m hoping that it’s starting to flatten out (fingers crossed) I know though that unexpected dips can still happen!!!  Isabelle asked me when I’d be ready to go to a theme park, maybe the end of the year, we’ll see – maybe I’ll have a go on a real roller coaster!!  There is a lady who lives in the US who I’m inspired by, she’s managed to go from walking with a cane to running 5km, and she calls it cane25K!  Plus she’s moved up to 10km and also going for a half marathon!  How cool is that – it’s what I’m hoping for!!  Note to self....  I need to make more notes on what happens, 2 months is a long time and I’ve forgotten things, I’m sure there has been more action than this!

Dr Fedorenko, I thank you everyday!  and Anastasia, I'll be back to dance with you one day xx

So today is my birthday, I’ve already been spoilt this morning with presents in bed and I’m also being spoilt with having my husband home for the day so I’m off to enjoy that now. 

I just wanted to leave this with a poem, it’s one my Grandmother wrote for me when I was little, I read it this time tomorrow last year  – hopefully I’ll dance again one day! 

My grandparents, My brother & me

First Concert

Guess where we are going tonight, where the lights will shine so bright?

The time will be exactly eight, we musn’t be a minute late

For the lights will turn down low; Guessed?  It’s Tessa Maunder’s show!

In the concert young and gay is a mouse whose coloured grey.
All will wonder “who is she?”  We all know it’s our Natalie.
At home she dances all day long, we watch her as she hums a song
Practicing, one, two, three and four.  I’ve watched her in the mirror by the door.
She holds her head up nice and steady, her back is straight she’s nearly ready.
Her hands and feet are in position, then off she dances, with precision
She’s only four, and has a long way to go.  One day she may be great we know
Cause I used to feel the same way too.  Good luck little darling whatever you do.

 

OMG I can't beleive it's been 3 months since transplant!!

16th January 2015

Day 0+92 (3 months!)

I have to say straight up I can’t believe it is 3 months already since my transplant, how much has that time flown!  (Can’t believe it Matt, can you?? – she says arrogantly assuming he might be interested in reading my blog!!)
  
So it’s 2015, Happy New Year!!  2014 what a year! - the most unexpected happened and it was hard but we made it and we are stronger for it – 2015 is going to be amazing, I can feel it in my bones!!! (literally – some of you will understand that one!!!)

It’s hard to believe that this time last year we were just returning from a family holiday for Christmas and New Year to Hong Kong, Thailand & Singapore,  – HSCT was not even on the horizon at all, we had no knowledge of it and as far as we were concerned I had MS, was on a DMD for life and we had to deal with it,  a hard pill to swallow (or monthly infusion should I say), I know not really funny.... 


Isabelle & me at Singapore Zoo

I was really excited about the holiday but I was pushing myself to do what we were doing as I knew there would be walking or wheel chairing for theme parks, zoos, city sites, shopping – lots to see and enjoy but I knew it would be hard (and it was).  I was also thinking, considering my deterioration since July 2012, it might be the last holiday where I’m able to walk well enough to do certain activities.  At the time I was a combo of walk on my own (short distances), or with a cane or husbands arm or one of the children’s hands for balance or wheelchair for the longer distances.  I was then on a DMD called Tysabri and hadn’t seen any improvement or stabilisation of my disease so my future looked like it was on a downhill slope in regards of my MS.  

Paul & the kids had to go without me

The holiday was amazing..  I managed to do almost everything, walked as much as I could and then wheelchair when needed.  One thing that stuck with me that I couldn’t do was the elephant ride.  I wanted to go on with the kids and Paul wasn’t fussed so he stayed with the wheelchair, we bought the tickets but as I was in line watching people go on before me I realised that I couldn’t.  You see it was quite a quick change over between groups and you needed to able to push yourself up onto the elephant, well with my leg power that really wasn’t going to end well if I tried so I called Paul and tagged out!  Next time I’ll be able to do it!

I’m not about to write about my whole year I was just reminiscing about where I was at the beginning of the year and I’m still amazed at what has happened.  That turning point in March when I watched Kristy on 60 minutes and found out I had HOPE for the future and maybe we could still do those amazing holidays we want to do.  I know you can do amazing holidays without the ability to walk but when you could and then you can’t you feel ripped off and of course then those are the things you want to do!  Lying by a pool on a tropical island is always top of my list but with my failing legs then skiing in the French Alps or climbing Machu Picchu became top of the list – hopefully I’ll get there now!!    

On my list!

Okay so I have to say I’ve started this a couple of times now over the last few weeks but have not managed to finish as the writing hasn’t flowed or babbled out as it has before.  Not sure why but hopefully third time’s a charm and I’ll get it out this time!  I think it’s easier to write everyday than to write occasionally as trying to remember what’s happened over a few weeks can be harder than what just happened that day..  Anyway I won’t bore you with everything as I have really kept to myself and not ventured out much as I have been very much OCD with my germ protection which has paid off as here I am at the 3 month mark and I’m very healthy indeed.  I saw my local Haematologist yesterday and he is very happy with where all my numbers sit with my blood work so much so that he now doesn’t want to see me for 2 months!!  I’m struggling with that one a bit as it felt like my safety blanket having the visits to look forward to but I know I’ll be okay – I know where he is!!  And I know I can phone or email his assistant anytime and she will get any answers for me if needed.


My bro & me

I’m going to list the good and the bad that’s been happening.  Now when you look it might look like the bad outweighs the good but let me tell you the good things that are happening hold a lot more weight than the bad so really that list is actually longer and that makes the future definitely look brighter!!

GOOD
These are things I can do since HSCT that I couldn’t do before!
• Walking without a cane, I haven’t tested this much on the outside world as I haven’t been out much but so far so good
• I can walk 1.5km on the treadmill, only at 3km/hr but that’s pretty good for me
• I can do 4km on the exercise bike
• Wii Fit – Step Plus, Obstacle Course, Ski Jump (I screamed when I got this one as I couldn’t get my legs to push and snap properly a few months ago)
• Met my Physio from MS QLD and had an assessment (which I’d also done prior to going to Moscow), results were very promising!
• I think my MS fatigue is gone..  I still get tired but I think that’s for other reasons.  I can watch TV until 11pm and stay up late reading a good book – this is exciting!
- Stairs - I nearly forgot to add this one in..  I can go up our home stairs without holding the railing, woohoo!, 17 steps I just got Seb to count.  Still have to be careful on the way down though..

BAD
• Head Heat / Hot Flush - my head gets so hot and then sometimes the rest of my body follows and I have to quickly get in front of the air conditioner.  This is not helped by the fact that it is summer and so hot here and the humidity is ridiculous.
• Sleeplessness – sleeping is horrendous (as Paul can very well attest!).  I toss and turn most of the night and then of course have trouble getting up in the morning.  The hot flush thing makes this worse of course as it happens through the night
• Joint pain – my joints hurt (this one is quite new).  Even my toe and finger joints which makes it hard to push myself off the ground especially since my leg power is very ordinary to say the least
• Muscle pain – this started a few weeks ago.  I only do light exercise but my body makes me feel like I’ve run a marathon.  It’s especially worse when I’ve been sitting down for a while, once I get going it’s not too bad but when I start going I feel like a very old lady (or the tin man!)
• Sternum pain – this one comes and goes and hopefully it will go again soon.
• Swollen feet, ankles, legs – oh joy!  I’m sure this one is made worse by the heat that’s for sure..
• Tears – they still come out of nowhere sometimes out of sheer frustration that I’m not on top of my game.

These things I’ve listed in the bad list, although not great, will hopefully be temporary.  I’ve asked about them on the forums I’m part of and others have experienced similar things and they’ve eventually subsided at differing times.  My Haematologist said some of them could also be attributed to early menopause or temporary menopause so we’ll check that out if they continue in a few months – oh what fun early menopause would be – oh well, worth it in my books!


Hair!

My hair has started to grow or should I say sprout!  I did shave it again since I’ve been home as it started really patchy but now it seems to be growing okay, just a bit thin which doesn’t look great but I’m told it will thicken up over the next few months.  I think it looked better when I was shiny bald than this thin hair look – thank goodness for the scarves, the wig hasn’t made an appearance outside the house as it’s just too hot for me.  Money well spent – I think not!!

My fingernails look really interesting, will have to post photo of them..  They have these interesting lines through them and the bottom part is really light in contrast.  I believe it’s a chemo line and shows the new growth I’ve had since I had the chemo, I kind of quite like them as they look so different!


Not sure if I’ve mentioned before but I’ve seen my Neurologist since I’ve been home and he was really interested in everything which is fantastic.  Not all neurologists are keen on their patients pursuing HSCT, I seem to be one of the lucky ones who has this support.  So when I saw him I talked to him about Rehabilitation and he referred me to a specialist Rehab doctor who I will see next week and begin rehab with – this is very exciting, bit slow with this happening due to Christmas/New Year period but it’s now happening and I can’t wait to start!!
I think that brings me up to date..  School Holidays will finish after Australia Day (26th Jan) so that will be a rude awakening to real life again.  Kids have been amazing with just having a relaxing holiday time at home with not much happening.  They did have a great week with their cousins visiting over Christmas which was lovely and luckily they have had their Grandparents still on hand to take them out which has been amazing.  They’ve been ice-skating a few times with Grandad which they really enjoy – can’t wait till it’s my turn to try it with them!!

I updated my Wii Mii!

The Rollercoaster will continue for some time and even though I’m having these amazing improvements we don’t know what the future holds.  I have to remember that the hope was to halt my MS (which I already feel it has) and anything extra is a bonus. 

We continue to be positive and I’ll “Be Strong, Be Brave and Be You” and I have to say with all the ups and downs, and I know there will be more, I feel more like me than I have in some time!!

Hope your 2015 is starting out amazing!

Nat xx

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 !!