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
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| 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!!
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| 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!
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| 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.
