Fatigue? What Fatigue?

Fatigue? What Fatigue?

Day +145 I’ve generally been a pretty social person and happy to mix and mingle, that was until MS turned up in my life. I had to pick and choose and prioritise. Fatigue would get the better of me and I’d need a nap at least a few times a week and I’d always be the...

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120 Days

120 Days

It’s been 120 days since my stem cell transplant. Woot!! Recovery for me has been what I think is pretty smooth. Becoming a neurotic germaphobe with OCD has served me well with no cold, flu or infection. It’s been a slow and steady process, one day on (appointments...

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Everything happens, then you make the reasons

Everything happens, then you make the reasons

I had an appointment this morning, nothing new with that but it’d been a while since I’d been to this particular clinic. Making light conversation with the Receptionist and discussing what I’d been through she said the old adage, “Well everything happens for a...

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Strawberry shortcake

Strawberry shortcake

Day +61 (61 days since my transplant) I don’t think I really covered what it was like when I left Moscow and the care of Dr. Fedorenko and his team December 24, 2015 at 11:50pm. While Moscow was very good to me and has given me another chance, my sister Kate and I...

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Crash

Crash

Home (Mum & Dad's): 2 Weeks Today New Stem Cells: +29 Days 2 x Weeks back from Moscow – TLC at Mum & Dad’s. 1 x Outing (Haematologist)  1 x Jigsaw Puzzle Complete (500 pieces) 1 x Lego Mouse (eleventy billion hours) 5 x Visitors + Family (all HAZMAT...

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Define Normal

Define Normal

I’ve now been home 5 days and I’m +20 days transplant. I feel good, if not great. Yes, I’m anticipating a *crash* but as with everything so far I’m just taking it day by day by day and listening to my body and we’re communicating pretty well right now. If I need...

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There’s no place like home…

There’s no place like home…

Day #31 It’s quiet. Really quiet. Not church mouse quiet, but still quiet. I’ve now been an inpatient at the he A.A. Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center, Moscow, Russia under the care Dr. Denis Fedorenko...

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Reality Check

Reality Check

Another day, another reality check for some. The HSCT forums have been going a little cray, with quick questions and last minute requests. We and me (an almost HSCT vet) are happy to help. It’s a BIG DEAL. HOWEVER. Stop. Check the forum pages and...

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Q&A and a bit more and some probably not enough

Q&A and a bit more and some probably not enough

I’ve been asked for a few recommendations for travel to Moscow in winter. Some of this may adapt to year round – just use your judgment. My attempt at humor gets in the way sometimes, so I’ve tried to tone it down. This is in no particular order, just thoughts as they...

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Isolation. It’s not just a word.

Isolation. It’s not just a word.

Day #15 Isolation Day  #5 Since I’ve now been technically in isolation for a few days now I think 5 they’re all running in together, and there’s a few emotions running rampant, all mentioned above by the eloquent Brené Brown. It’s worth noting it’s not a bad...

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Some Moll stole my spoon

Some Moll stole my spoon

Day #15 (I think. I think I missed one). I’d like to start this post all settled in to catch you up on what’s been happening here in Moscow in my HSCT bubble, but as I snaffled my Movenpick wish Chocolate Ice Cream from my stash, I discovered some Moll stole my spoon...

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The longest of days and the greatest of days

The longest of days and the greatest of days

Day #13 It’s not very often you get to celebrate an entire new birthday.Today I did. This’ll jus be a synopsis, as I’m pretty tired from everything that’s happened.I promise more details and pictures at some point tomorrow. It was a busy day, may not seem like much....

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Swim Stemmies, swim

Swim Stemmies, swim

Day 9 Today was a long day. It started with an uncomfortable sleep, no pain just weird having a couple of tubes sticking out your neck.With the help of some drugs, I got some sleep albeit form the beauty component. Woke early at about 7 as I was informed that...

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Design is a funny word

Design is a funny word

Day 13 I’ve just finished watching the Steve Job’s film.Kind of pointing, kind of poignant. “Design is a funny word. Some people think design means how it looks. But of course, if you dig deeper, it’s really how it works.”Steve Jobs After passing through my final day...

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The one time I didn’t procrastinate

The one time I didn’t procrastinate

So I’m a bit of a procrastinator by nature, it’s a fact. Anyone who really knows me, knows that’s true. I’m not being a debbie downer. I get stuff done and love doing stuff for other people, I like being useful and helpful. I’m just not great at doing stuff for...

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My Mother’s Daughter

My Mother’s Daughter

Day #11 My Mother’s Daughter. The windows are open, well they’re ajar anyway. It’s always annoyed me, my Mum’s quest for fresh air. Travelling and sharing an apartment while I was a teen and it snowing outside. I guess I’ve just grown into it and it’s like her way of...

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Harmony, Patience, Hope and Faith. What about Joy and Grace?

Harmony, Patience, Hope and Faith. What about Joy and Grace?

Post #XYZ (lost count) I know it’s been a few days, but I’ve been waiting on all the above and the days are blurring. I had a small meltdown yesterday, totally over the waiting game, damn Hope, Faith, Humanity and Grace et al.. and all I was just wanting my numbers to...

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Cavalry have arrived!!

Cavalry have arrived!!

Calvary have arrived and by that I mean my sister Nicole. She has brought supplies in the form of magazines and Arnott’s Mint Slices to sustain me! And a hell of a lot of love and moral support too. Today also saw the central line come out of my neck that was used for...

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A new normal

Today it seemed like a new normal had emerged. Regular infusions and visits from Dr. Fedorenko and Anastasia. I wash a few smalls and wait for the onslaught of food to arrive in whatever manner it may be – soup, porridge, boiled apples or treats brought in by various...

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Tears are words that the heart can’t say…

Tears are words that the heart can’t say…

Hello Wall, Hello tears, I wondered when you’d come in force? Not in a blabbering way, just in a fearful teary way… I just knew you wouldn’t be far. After a good and drug induced sleep I woke up a bit lots with the anticipation of my neck line being placed at a...

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A breath of fresh air…

A breath of fresh air…

Day 6 Last night I was “sleepless on steroids”. Due to yesterday’s infusion I was awake till 1:30am then awake again around 7:00am after being jabbed at 3:00am. Pft. No major problem with that though, it’s not like I had to get up and had anywhere in particular to go....

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Testing, Testing…1…2…3…

Day 2 Testing… Testing… 1… 2… 3… Woke up early this morning at about 4:30. Kinda got my times wrong. Fark. Anyhoo, took the time to get some *samples* ready and managed to get back to sleep. Then it was time for swabs at about 6:30am, no big deal and quick and...

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It’s showtime

It’s showtime

Day #1. I made it, I’m here at the AA Maximov Department of Haematology and Cellular Therapy, National Pirogov Medical Surgical Centre. Moscow, Russia. Started the day with a few tears but soon got myself sorted and ready to depart the hotel at 10:30am. The...

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For the last time…

For the last time…

The last couple of weeks have been full of “for the last time” moments. Last time with MS moments I mean. Last day at work. With MS. Last night in my own bed. With MS. Last drive of my car. With MS. Last Big Mac, Ben & Jerry’s, Pad Thai, Cheesecake etc…. With MS....

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The Green Light

The Green Light

Day 4 Let’s just start this post with getting the big news out of the way… At about 2:00pm today I got the official approval that I can have the HSCT. Hurrah!! It’s hard to believe that I only initially planned to come for testing. Now let’s back up to the...

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Five

Five

Day 5. Day 5 in hospital, and Day 1 of actual treatment. This morning I woke at about 7:00am, which is the latest I’ve slept since arriving. It’s also a little frustrating as the sun as what there is of it doesn’t rise until 9:30am. There was a little dusting of snow...

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The Final Countdown

The Final Countdown

The final countdown is on. Dr. Fedorenko stopped by mid morning to check on me and to confirm that only the 2 tests would be performed today and that he would come by tomorrow *for discussion*. The *discussion* is when he meets with me to discuss my MS diagnosis,...

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Struggle Street

Struggle Street

Last week I spent some time on Struggle Street. I was snappish and sad and angry at everthing and pretty much everyone and not for any particular reason. In particular I was sick of thinking about HSCT, talking about HSCT and counting down the days It’s also an...

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I saw a sign

I saw a sign

I never did Brownies or Girl Guides, never learnt an instrument so I wasn’t part of a band either. I wasn’t particularly into sports and so no club there and haven’t had kids so no Mother’s Group for me. God I sound boring and or deprived. Since I embarked on the...

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WTF

So here it is, last night I had my first WTF moment. There were tears on my pillow. Going to bed after a nicey afternoon and evening, the Schnauzer was curled up in her bed next to mine and it dawns on me… WHAT THE ACTUAL FUCK AM I DOING? I’m not *that* bad, I still...

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