I've been thinking about this post for about a week now. How GREAT is Community.
Examples in the last 10 days:
1)
Last weekend, my heart was warmed when I was pictures of a group working on a garden for an incredibly deserving family going through a health battle.
The way people pitch in and get things done is just outstanding. No muss, No fuss. Just get in, have a bit of fun, and get "it" done (whatever "it" may be).
2)
I'm a member of a "HSCT forum" on Facebook. We have been, or are planning to go to Russia (or wherever) for HSCT treatment. One of the forum members (who was off living his amazing new lift post-HSCT) and a horrific accident and it still fighting a battle...he nearly lost his life but through sheer determination, is heading out the other side...all be it, without the use of his legs. How shitty is that post-HSCT which was so successful for him. Anyway - I have not met this legend...but followed his story on facebook and still recall his time in Russia...even though it was a year before my time! Our "Community" on facebook sent videos, messages and kept in constant contact about his condition. I was really heartbroken when I got the news of his accident and my heart breaks that he has lost the use of his legs that he so recently repaired. But the Community was, and is, outstanding.
3)
Again - MS related. Back in 2011 (??) I went on a retreat with fellow MSers to learn about the "Overcoming MS" lifestyle. We spent 5 intense days together, learning new ways to handle this disease (diet, exercise, meditation, attitude). SUCH an outstanding bunch of crazies. Well one of us is going through a rough patch and - just like that - everyone came around her - no matter our own struggles....our hearts bled for this lady and the realisation that she is facing (that even doing 'everything right', she is deteriorating). A beautiful community stands by her.
4)
My work. We have a staff member who is very ill. She is interstate having treatment and is soley supported by her sister. Our work call her, text her and we have all done her a letter (or joke, or prayer, or whatever)...and everyday she has a special shiny black envelope arrive with news of her "school family" at home. (I had this done for me when I got back from Russia and I can say from personal experience, it is SOOOO special). No matter what is in the envelope, it is filled with love and keeps you feeling part of that community.
5)
My work again. We have a gorgeous student who is an incredibly talented singer. She has her own band and is releasing her first EP! Not bad for 15! Our local community and the music community in town is supporting her and her band and their dream! BUT - even though this could selfishly be about her and her dream, the money raised from her function tonight is going to the Leukaemia Foundation...community supporting community supporting community.
6)
Two local sports girls heading to America to play softball. Absolute superstars. Our local community got behind them to help fundraise and support them in any way.
7)
Back to my community when I was raising funds to go to Russia. A little local community supported me like nothing I could have ever imagined! It seriously was RIDICULOUS. I cannot express how humbled I remain to this day and I try to pay it forward whenever I can.
Sadly I have not improved as I had hoped so, getting in and doing 'stuff' is hard so that's a little battle but I love the community's I am blessed to be a part of: my family; school; town; sports teams; gym; friends; faith; and so it goes on. I truly hope to be a blessing in the communities I am fortunate enough to be a part of. I pray my symptoms improve so that I can be a do-er for others.
Friday, 18 August 2017
Wednesday, 21 September 2016
HAPPY 1st HSCT BIRTHDAY TO ME!!!
Happy 1st HSCT Birthday to me!
22 September 2016 marks the 1 year mark since my Stem Cells
were returned to me to rebuild a new, fresh, MS-free immune system.
1 year on and I’m in Adelaide, alone again, having an
MRI to confirm that nothing is going on internally as far as MS goes. This is the type of situation where I want
the news to be “There is no news; nothing going on; nothing new to report”. I feel confident this is the case.
I am struggling with how to reflect on the year that
was. In my last post I said I wanted to
give time to a decent post – so I can read it in years to come, Piper can read,
etc. You may all want to bow out in
about 4 paragraphs…Zzzzz
I had PPMS and I’d had it for 14 years before travelling
by myself to Russia – thanks to all of you, my amazing family, friends and super-committee!
I didn’t even know there was a thing called the EDSS
(disability scale) before I left, but on leaving for Russia I would say I was a
5.5 – 6.0…and now I’d say I’m a 5.5 – 6.0 which is quite bad disability. I don’t match a lot of the criteria as I can
work full days, don’t suffer fatigue etc, but when I look at the walking component
and the distance I can walk…5.5 / 6.0 is my number.
I am confident that the HSCT procedure has stopped the
progression and that is all I ever went for.
A year on however, I must admit that I am (really) struggling with the
fact that I am yet to see improvement…even though this was never promised and
(if we’re honest) probably not on the cards for me being PPMS and long-time
diagnosed – and yet I remain hopeful if not confident. I am just keeping a positive mindset as I
think that pays a huge role. But some
days…bloody frustrating.
The time in Russia was, as I think I’ve said many times
before, one of the most wonderful experiences of my life. I have, on occasions, quite acutely missed
being there – food and all! Nah, maybe
not the food but definitely being cooked for!
Dr Fedorenko, Nicolai, Anastasia, Eirena, Olga…they were the most
wonderful people to be cared for by. I
know I gushed a lot last year but my admiration for them is through-the-roof and
my gratefulness is beyond any measure.
The patients and carers that I was fortunate enough to share
the experience with will forever hold a special place in my heart. I think of that saying of “season, reason,
lifetime’ and although they were only there for a reason … they are all forever
in my heart, if not my daily life. I
truly hope they have seen the improvements that I so hope for. I reckon most of them have. Not wanting to ‘name names’ but Betty, Donna,
Vanessa, Cecile, Greg, Ken, Mariecka, Dom, Bill, Kim…what a bunch of bloody
legends. I feel truly blessed to have
been in Russia at the same time as these guys….
This is not a post of ‘thank you’s’ but there was someone
that kept in touch with me when I was in Russia who was a true Angel. I’ve actually only met her fleetingly once
(maybe twice). She is the cousin of one
of my dearest friends….I have gone back and read her messages to me several
times this year and her heart and humour, kindness and love were something that
helped me so much in Russia, but also in the year since…so thank you
Lynne. You were a big part of the
experience and a true God-send.
My time at home in lockdown feels like forever ago. I
can remember fellow HSCT girls telling me that the time will actually go quite
quickly and you’ll wish you had the time again.
I had 4 months at home ‘in lockdown’ on my return. It was summer and I wished the time
away. But now…how I wish I could have
another go at it! I was far too ‘busy’. I’m not crafty but I did so much housework
and ‘work work’ because I felt I needed to be doing something – I couldn’t get
the concept of REST…couldn’t watch the TV during the day, couldn’t sit in the
sun (due to no sun exposure after chemo and heat intolerance). I felt guilty if my husband came home and I
wasn’t up and dressed with a clean house – not that he would have given two
hoots but that’s how I felt.
I was at 100 days (which is pretty much the end of isolation) on New Year’s Eve. We went to
the usual beach town that we’ve gone to since forever but I only lasted 4 days
from memory. I was still weak and found
the beach just too hard. The population
of the town swells and I wasn’t comfortable in crowds so in the end, it was all
just too hard.
I went back to work at the beginning of the school year (I
work in a school). I have worked 4 days
all year and will increase to 5 days (full time) in about 3 weeks’ time –
eek! Work is crazy busy and I know that
I am not really doing the right thing by myself by pushing myself but….well, I
think it’s just my way. A friend’s hubby
had an amazing chat to me early in the year and, having lived through something
similar, his insights were amazing. He
talked about being selfish, putting myself first, being the priority…it all
made sense (and still does) but somehow “I” just get swallowed up in the day-to-day and slide down to the end of the priority list…gotta work on that.
I started gym soon after my return. I remember being incredibly weak – weaker
than before I left for Russia but that is normal given what your body has been
through. My little gym trainer Nikki is
wonderful. She’s a kick-arse trainer in her
own right but ‘dumbs it all right down' for me.
I’m embarrassed at what I can/can't do but it is what it is. I have regained some strength but it’s
slow. Man it’s slow. It’s a struggle for me because I was such a
gym bunny pre-MS so mostly, I find things frustrating - but I love it after I’ve
been. Simple things are so hard. One the hardest things we do is….climb the
stairs. Ridiculous. I still can’t lift my legs behind me (like a hamstring curl, bending
at the knee). Such simple things. Do.
My. Head. In.
I go with my 79 year old dad (who is an instructor for over
50’s at the gym) some nights which is special.
I really want to be able to go for a big walk with him and my daughter. He walks 4.5kms each night and has done for
over 20..possibly 30 years! That’s been
one of my main goals. That and wearing
a) heels and b) havianas.
If I think of the year, I would have to say, I have seen
glimpses of improvement – but only glimpses.
Still….who knows! There is a lady
with a similar MS story to mine and she has improved out of this world – mind
you, she has completely dedicated her life to getting fit and strong whereas I
am struggling to get to the gym more than once a week. This is my ‘area for improvement’. I know it, Nikki knows it, my parents know
it….it’s just hard when life gets in the way.
As I said, I work 4 full days, I have a 10 year old daughter that needs
running around each night for dance, netball, basketball, swimming, acrobatics,
I have a husband that works 2 jobs…just life.
Another reason I don’t go to the gym as much as I need to
is, by the time I leave…I can barely walk ….like, barely. I need someone to help me to my car, sit and
rest a minute before I leave. It’s quite
humiliating. If I have Nikki or Dad
there, then they will walk me out, but I don’t like to ask anyone else and just
stagger along the wall to my car. It’s
not pretty. I imagine you can see that I’m pretty independent so this remains a struggle.
As I’ve said above, this year has been pretty low key for me
and hence my updates have been …er non-existent unless I’m having a shitty time
(as one of my beautiful sis-in-laws highlighted for me)! But my sister is using this year to battle
breast cancer…for the 2nd time!
I am so in awe of how she has just got on with things. She had an operations in June to remove the
cancer, started chemo, lost her hair and so on.
She got very sick from the first ‘type’ of chemo and is currently now on
weekly infusions….meanwhile working and playing sport. Incredible.
She’s very much a ‘no muss, no fuss’ girl!
What else can I say? I pray a lot…for me, my family, other
HSCTers, friends….but quite selfishly…I pray for improvement/symptoms to
disappear…A LOT. Feel free to join me if
that’s your thing! I reckon I’d be
pretty awesome fun if I could regain some of my old self. My ‘thing’ is sports, fitness, etc so
recently I’ve started to really struggle with the fact that MS took that from
me before I took out MS. I messaged a
friend last week and explained that craft, cooking (!), painting, etc is just
not me. I had grand plans of arranging
all my photo’s in photo albums when I was home and it didn’t get touched. Stuff like that feels like ‘work’ to me, not ‘play’. I remember doing some of that adult colouring-in while in Russia and
recall that after 2 hours it was just a battle of wills to get it done, rather than
the mindfulness activity it is supposed to be!!
After my very public year last year, I’ve enjoyed not
talking publicly this year although I was quite proud of a talk I gave to Lions
and Rotary. I can post that if you want
a read but it’s probably more of the same…it was quite overwhelming suddenly
talking about my MS all the time when before, I never talked about it. Ask my friends who were desperate for me to open up! Not because I was embarrassed or anything, I
just didn’t want it to define me…but I’d say it has after last year. I think most people look at me and think of me as “Mary
with MS who went to Russia”.
As you may have seen, my hair has grown back and is the most
ridiculous brown curly mass. I quite
passionately hate it but am trying to grow it out. Not that I think there was much to work with
to begin with, but losing my hair and having it come back like this…well… :( But whatever. Whenever I look in the mirror I (still) just shake
my head. Well played Chemo, well played.
So – moving forward. I’m putting it in writing so that any of you
that know me can hold me to this:
1) I gave myself a year to see improvement and if none, was
going to look into options to help me. I
have an appointment on Friday to trial a WalkAide which is a device that activates your muscles similar to a tens machine. It is supposed to help with
‘drop foot’ so may be useful but as I said last week, I’m already going into the
consultation thinking that it’ll be yet another thing that works for everyone,
but me. Wrong attitude perhaps??
2) Failing that I will look into trekking poles. I have tried a walking stick but it was
useless. I’m thinking trekking poles
will be (a) cooler and (b) more steady given you’re not learning on one side.
3) Gym. I NEED to
build this to 3-4 times a week. I’m not
sure if I’m setting myself up for failure here as, as I said above, I am about
to go back to 5 days of work so …. BUT I have to do it.
3) Mediation. I’ve
done spasmodically for years but I am…I AM going to do each day.
4) Physio. I’ve
started this and will try to use to help my gait.
5) Eating….less chocolate, more fruit. I don’t mind this one as I spent all last
summer eating processed food, canned fruit or cooked vegies. Perfectly happy to dig into some salads!
I think that’s it for now.
Progress: stopped. Improvement:
Nil. Attitude: Positive (but
frustrated). Hair: Ridiculous. Heart:
Overflowing with Thanks.
Mary OUT.
Saturday, 17 September 2016
NOT QUITE THE 1 YEAR UPDATE.
OMG this feels sooooo weird being back on here!! I feel like my room should be brighter...cleaner :) and the food should be more .... adventurous!
This is NOT my one year update because I want to give time and effort to that post. I want to really reflect on the year, thank some people, pay tribute to my sister, whose drawn the 'battle card' this year, thank my amazing family, put my hand up to what I need to do better (R.E.S.T.) and update you all on my progress (it's not exciting trust me).
I am back to working 4 full days (about to be 5 again) and I love my job and the people I work with. Truly - I love it and them. I'm very blessed.
My daughter is doing something every night so while I'm a tad slack at getting to the gym and doing things for myself (sorry Nikki), my daughter is busy and fit and doing great!
Andy, my hubby has returned to normal husband stuff. He works 2 jobs and lives with his "Netflix" addiction.
No. Today's a whinge. One thing I have noticed since coming out of isolation and lock down on my return to Oz...I have become SUCH a recluse! At first it was because of germs and my tendency to be OCD and stress about crowds, hygiene etc... but now it is just because everything remains
SO. DAMN. HARD.
As I said above, I love my job....love it. But unfortunately that is all I do. I am so frustrated that I haven't got the improvement yet that I so (SOOOOOOOOO dearly) hoped and prayed for.
My standard line when anyone asks how I am is "Fine. Back to 'my normal'. No improvement but the procedure has NEVER claimed to improve symptoms and only ever claimed to stop the progression". So it's been successful.
I knew this CLEARLY when I went to Russia and I can promise you all I have absolutely no regrets (in fact it was one of the most amazing times of my life) but you know....I prayed really frigging hard for just SOME improvement. Just to walk 'normally' - for a distance . Not run; Not skip; Not revive my netty career...just to be able to [go for a] walk. And yeah - that hasn't happened.
I am back to how I was before I left for Russia.
I am having an MRI next week to confirm that nothing is going on and I'm confident we've stopped the beast, so I'm not stressed about that.
Today was a big Netball / Football day for Mount Gambier. I LOVE netball ... (although can take or leave football)! and I knew someone playing in just about every game that I would have loved to watch. In fact my sister was playing her final game. She's busy kicking cancer's butt in her down time so I really would have loved to have gone and seen her last game before she retires.
But - the idea of walking between courts, toilets, football, food van and even walking from the car to the courts (which would be miles away as 3/4 of Mount Gambier would have been there) was just too much. I have no walk aids and no one has ever recommended....but I am starting to accept I need ... something. And That sucks eggs.
I'm trialling a WalkAide machine that might be great. Here's hoping. I'm thinking about getting trekking poles as I know of another lady who uses them and pushes out 10km walks! Whaaaattt!
Who is supposed to tell you this stuff? Seriously. After seeing someone comment on a forum I'm on, I bought a 'diktus band' online last week - who even knows what the hell that is - but it doesn't work for me or I've bought the wrong one or whatever. I've had nobody fit it for me or shown me what to do so I've tried following the 1/4 page instructions and well, it's not working for me - I'm doing this all alone. Should I be researching more? There's gotta be someone that sees me 'walking' that thinks "Hey! I know what would be awesome for her"...right? Frustrating much. So maybe the WalkAide will be great....but I'm going in already expecting it to be another thing that doesn't work for me.
Anyhoo - I've spent the day alone (my house looks amazing) and just a touch frustrated and how much MS managed to destroy my life before I destroyed it.
I've started to think about Summer. We're going to Queensland and it's going to be hot. I currently will find it incredibly hard to walk on the beach...or anywhere for that matter. So I'm stressed about it, whereas in my old life I'd be counting the days and planning day trips, beach days versus shopping days etc. Holidays / travel stresses me out so much these days...and I love(d) travelling...
Trust me - walking on the beach is so awesome when you're able...but when you aren't - it's a bitch. I can't even find suitable frigging shoes because I need a closed in toe and a heel....to wear to the beach(??!!)...in summer. Honestly. :(
Then I'm thinking about this pop-up bar in town. That'll be going again this summer and Andy tells me it's awesome. But I can't go there. Walking, bar, standing around chatting, toilets + alcohol....does not work.
So I'm frustrated.
I'm not sad, not crying, nothing like that. I'm just so frustrated and SO ready for prayers to be answered and improvement seen so I can be an active member of my family, community, work, friendship groups and so on. I want to re-engage with society but I just do not want to do it like this. Blah.
I seriously need to walk around the Blue Lake with my dad and daughter sometime soon.
OK - that's it. Mary out.
PS - Well done to all teams today!!! Hope you're partying way harder than you know you should be!
PSS - APPRECIATE the little things. Walking, dancing, running, shopping, thongs, converse sneakers....I miss it all sooooooooooooo much.
This is NOT my one year update because I want to give time and effort to that post. I want to really reflect on the year, thank some people, pay tribute to my sister, whose drawn the 'battle card' this year, thank my amazing family, put my hand up to what I need to do better (R.E.S.T.) and update you all on my progress (it's not exciting trust me).
I am back to working 4 full days (about to be 5 again) and I love my job and the people I work with. Truly - I love it and them. I'm very blessed.
My daughter is doing something every night so while I'm a tad slack at getting to the gym and doing things for myself (sorry Nikki), my daughter is busy and fit and doing great!
Andy, my hubby has returned to normal husband stuff. He works 2 jobs and lives with his "Netflix" addiction.
No. Today's a whinge. One thing I have noticed since coming out of isolation and lock down on my return to Oz...I have become SUCH a recluse! At first it was because of germs and my tendency to be OCD and stress about crowds, hygiene etc... but now it is just because everything remains
SO. DAMN. HARD.
As I said above, I love my job....love it. But unfortunately that is all I do. I am so frustrated that I haven't got the improvement yet that I so (SOOOOOOOOO dearly) hoped and prayed for.
My standard line when anyone asks how I am is "Fine. Back to 'my normal'. No improvement but the procedure has NEVER claimed to improve symptoms and only ever claimed to stop the progression". So it's been successful.
I knew this CLEARLY when I went to Russia and I can promise you all I have absolutely no regrets (in fact it was one of the most amazing times of my life) but you know....I prayed really frigging hard for just SOME improvement. Just to walk 'normally' - for a distance . Not run; Not skip; Not revive my netty career...just to be able to [go for a] walk. And yeah - that hasn't happened.
I am back to how I was before I left for Russia.
I am having an MRI next week to confirm that nothing is going on and I'm confident we've stopped the beast, so I'm not stressed about that.
Today was a big Netball / Football day for Mount Gambier. I LOVE netball ... (although can take or leave football)! and I knew someone playing in just about every game that I would have loved to watch. In fact my sister was playing her final game. She's busy kicking cancer's butt in her down time so I really would have loved to have gone and seen her last game before she retires.
But - the idea of walking between courts, toilets, football, food van and even walking from the car to the courts (which would be miles away as 3/4 of Mount Gambier would have been there) was just too much. I have no walk aids and no one has ever recommended....but I am starting to accept I need ... something. And That sucks eggs.
I'm trialling a WalkAide machine that might be great. Here's hoping. I'm thinking about getting trekking poles as I know of another lady who uses them and pushes out 10km walks! Whaaaattt!
Who is supposed to tell you this stuff? Seriously. After seeing someone comment on a forum I'm on, I bought a 'diktus band' online last week - who even knows what the hell that is - but it doesn't work for me or I've bought the wrong one or whatever. I've had nobody fit it for me or shown me what to do so I've tried following the 1/4 page instructions and well, it's not working for me - I'm doing this all alone. Should I be researching more? There's gotta be someone that sees me 'walking' that thinks "Hey! I know what would be awesome for her"...right? Frustrating much. So maybe the WalkAide will be great....but I'm going in already expecting it to be another thing that doesn't work for me.
Anyhoo - I've spent the day alone (my house looks amazing) and just a touch frustrated and how much MS managed to destroy my life before I destroyed it.
I've started to think about Summer. We're going to Queensland and it's going to be hot. I currently will find it incredibly hard to walk on the beach...or anywhere for that matter. So I'm stressed about it, whereas in my old life I'd be counting the days and planning day trips, beach days versus shopping days etc. Holidays / travel stresses me out so much these days...and I love(d) travelling...
Trust me - walking on the beach is so awesome when you're able...but when you aren't - it's a bitch. I can't even find suitable frigging shoes because I need a closed in toe and a heel....to wear to the beach(??!!)...in summer. Honestly. :(
Then I'm thinking about this pop-up bar in town. That'll be going again this summer and Andy tells me it's awesome. But I can't go there. Walking, bar, standing around chatting, toilets + alcohol....does not work.
So I'm frustrated.
I'm not sad, not crying, nothing like that. I'm just so frustrated and SO ready for prayers to be answered and improvement seen so I can be an active member of my family, community, work, friendship groups and so on. I want to re-engage with society but I just do not want to do it like this. Blah.
I seriously need to walk around the Blue Lake with my dad and daughter sometime soon.
OK - that's it. Mary out.
PS - Well done to all teams today!!! Hope you're partying way harder than you know you should be!
PSS - APPRECIATE the little things. Walking, dancing, running, shopping, thongs, converse sneakers....I miss it all sooooooooooooo much.
Saturday, 6 February 2016
MY MS SYMPTOMS
Have I ever even told you what my MS symptoms are?
I was diagnosed with MS back in January 2002 after I starting tripping on the treadmill at gym. I had symptoms well before that and spent 6 months in 2001 with a sports physio who thought the problem was my knocked knees. Then one day I went straight from the gym to the physio with my weak leg and said "This!! What is THIS?" He knew straight away and sent me for a MRI and lumber puncture which confirmed MS.
I was incredibly fortunate in that my MS progressed slowly (although was still enough to totally derail my rather excellent lifestyle). Looking back at 'now versus then' I thought I was so bad 'back then' when I'd give anything to be as 'bad' as I was when diagnosed! (excuse all the inverted comma's)!
I have..no, no I HAD Primary Progressive MS (PPMS) which is less common that Relapsing Remitting MS (RRMS). When I had MS (pre HSCT :) ) I didn't have MS attacks (where you have an exacerbation but then slowly recover) but I always had trouble with my gait. This is the least common MS.
I have lived with a weak left leg since before 2002 and its major problem is 'drop foot'. This is when your foot doesn't lift and flex so I tend to 'drag and slap' my foot along when I walk.
My gait has slowly gotten worse and the distance I can walk has greatly reduced over time...but I must remain thankful that not too much else went wrong.
My bladder / bowel developed problems somewhere along the way and I have urgency issues which is quite common in MS.
About 18 months ago, my right leg decided to start playing up. I was on the Gold Coast for a friends wedding and a group of us were at a Gold Coast Suns Game. My girlfriend had to help me to our seats when I realised..."Hang on...My right leg is being the b*tch!...What The??" It is totally different to my left leg! It doesn't have drop foot but is weak, has a deep 'bone ache', and tends to want to 'fold in' at the knee (so the whole knocked knees thing coming back).
Over the years, I've noticed that my left arm is not as strong as my right (which is weird because I'm left-handed) and I don't have the hand coordination I used to - which I can only notice when tying things or 'twinkling' my fingers so has not really been a consideration. I still type around 85wpm like a boss! :)
So - all in all - I don't need much improvement compared to some....but I just so dearly want these legs working again. I mean - how warped is it that I have bladder issues with legs that can't rush to the loo .....
I shouldn't be typing this today as I'm not in the right mindset but honestly - I just pray and pray (and pray and pray) for improvement. I know I have stopped the beast that is MS and I am so incredibly grateful and thankful that I had the opportunity to have HSCT....now I just want more. I find myself jealous of those with RRMS that are seeing improvements after only a month home. I'm SUPER CRAZY happy for them....I just want it too.
I've read about other patients with PPMS and their recovery and any improvements have taken longer but there have been improvements. One lady blows my mind with what she can do now (hiking and the like). So I just need to keep looking forward and staying POSITIVE.
At least I know now that 'this is it'. We ran into a friend yesterday whose wife had troubles a few years back (not MS related) and he told us that he used to say to her: "Every day that is 'just the same' as yesterday is a GOOD day! You are no worse." I need to get my head back into that mindset.
Thanks for listening! Mary OUT.
I was diagnosed with MS back in January 2002 after I starting tripping on the treadmill at gym. I had symptoms well before that and spent 6 months in 2001 with a sports physio who thought the problem was my knocked knees. Then one day I went straight from the gym to the physio with my weak leg and said "This!! What is THIS?" He knew straight away and sent me for a MRI and lumber puncture which confirmed MS.
I was incredibly fortunate in that my MS progressed slowly (although was still enough to totally derail my rather excellent lifestyle). Looking back at 'now versus then' I thought I was so bad 'back then' when I'd give anything to be as 'bad' as I was when diagnosed! (excuse all the inverted comma's)!
I have..no, no I HAD Primary Progressive MS (PPMS) which is less common that Relapsing Remitting MS (RRMS). When I had MS (pre HSCT :) ) I didn't have MS attacks (where you have an exacerbation but then slowly recover) but I always had trouble with my gait. This is the least common MS.
I have lived with a weak left leg since before 2002 and its major problem is 'drop foot'. This is when your foot doesn't lift and flex so I tend to 'drag and slap' my foot along when I walk.
My gait has slowly gotten worse and the distance I can walk has greatly reduced over time...but I must remain thankful that not too much else went wrong.
My bladder / bowel developed problems somewhere along the way and I have urgency issues which is quite common in MS.
About 18 months ago, my right leg decided to start playing up. I was on the Gold Coast for a friends wedding and a group of us were at a Gold Coast Suns Game. My girlfriend had to help me to our seats when I realised..."Hang on...My right leg is being the b*tch!...What The??" It is totally different to my left leg! It doesn't have drop foot but is weak, has a deep 'bone ache', and tends to want to 'fold in' at the knee (so the whole knocked knees thing coming back).
Over the years, I've noticed that my left arm is not as strong as my right (which is weird because I'm left-handed) and I don't have the hand coordination I used to - which I can only notice when tying things or 'twinkling' my fingers so has not really been a consideration. I still type around 85wpm like a boss! :)
So - all in all - I don't need much improvement compared to some....but I just so dearly want these legs working again. I mean - how warped is it that I have bladder issues with legs that can't rush to the loo .....
I shouldn't be typing this today as I'm not in the right mindset but honestly - I just pray and pray (and pray and pray) for improvement. I know I have stopped the beast that is MS and I am so incredibly grateful and thankful that I had the opportunity to have HSCT....now I just want more. I find myself jealous of those with RRMS that are seeing improvements after only a month home. I'm SUPER CRAZY happy for them....I just want it too.
I've read about other patients with PPMS and their recovery and any improvements have taken longer but there have been improvements. One lady blows my mind with what she can do now (hiking and the like). So I just need to keep looking forward and staying POSITIVE.
At least I know now that 'this is it'. We ran into a friend yesterday whose wife had troubles a few years back (not MS related) and he told us that he used to say to her: "Every day that is 'just the same' as yesterday is a GOOD day! You are no worse." I need to get my head back into that mindset.
Thanks for listening! Mary OUT.
DAY +138 - CRAP DAY
You know, I think I keep a fairly upbeat, positive nature most of the time (although my husband may tell you different)...but today....today is a sh*t day.
It's a glorious Sunday here today. 25 degrees, sunny, no wind...just beautiful.
I should be happy right? I mean...I'm blessed! I have a supportive family, awesome friends, I love my job, I have a great house...
But here's my day:
My daughter is at a birthday party but I couldn't even go drop her off as it's in a park and they were set up about ....oh...50 metres from where we parked and today, Today - I just can't make that distance....
So my hubby drops her off and we go to pick up our Click and Collect groceries and shop or our fruit and veg (as you do when you're kid free). We thought we'd shout ourselves a coffee/tea before we went in but today I could barely walk from the car park to the coffee shop. However, we made it (thankfully my hubby is strong and holds my hand) and sat down to a coffee/tea/bite to eat. Relaxing? No. Nature (as she invariably does) decided to call and I had to walk (again ONLY) about 50 metres in a shopping mall (so nice, smooth tiles) to the bathrooms and I barely made it....like just barely...I was sweating! SOOOOOOOO frustrating.
By the time I got back to hubby, my legs were shaking uncontrollably and I asked to go back to the car to wait while he did the grocery run around. I have never done this before.
I am so frustrated. SO frustrated. I can't even type coherently....
I KNOW HSCT stopped my MS. I KNOW I may never see improvement. I KNOW all this but I want improvement SOOOOO bad. I KNOW this attitude at the moment doesn't help (and it is rare) but I'm just SOOOO p*ssed. WHY didn't I do HSCT sooner? WHY am I having to live like this? The ol' "WHY ME" is rearing its ugly head. I'd be SUCH an awesome, active, busy, fun mum and wife without these 'MS leftovers'. Ugh.
Sorry for the vent. I pray daily for improvement now. I KNOW I'm selfish - all I wanted from HSCT was to stop MS and it's done that. I know it has....now I just want more.
Ugh. I hate when I'm like this. I'm teary, frustrated, miserable. My poor Hubby and Daughter.
And on such a beautiful day. We should be canoeing, SUPing, riding our bikes....instead, I'm sitting in front of the computer in tears; Piper (thankfully) is blissfully unaware at her friend's party; and poor Andy has no idea what to do so has retreated to Bunnings (no doubt bored with our marriage)....
Ugh. I am NOT this person. In the words of the GREAT Taylor Swift....I need to 'Shake it Off'....
It's a glorious Sunday here today. 25 degrees, sunny, no wind...just beautiful.
I should be happy right? I mean...I'm blessed! I have a supportive family, awesome friends, I love my job, I have a great house...
But here's my day:
My daughter is at a birthday party but I couldn't even go drop her off as it's in a park and they were set up about ....oh...50 metres from where we parked and today, Today - I just can't make that distance....
So my hubby drops her off and we go to pick up our Click and Collect groceries and shop or our fruit and veg (as you do when you're kid free). We thought we'd shout ourselves a coffee/tea before we went in but today I could barely walk from the car park to the coffee shop. However, we made it (thankfully my hubby is strong and holds my hand) and sat down to a coffee/tea/bite to eat. Relaxing? No. Nature (as she invariably does) decided to call and I had to walk (again ONLY) about 50 metres in a shopping mall (so nice, smooth tiles) to the bathrooms and I barely made it....like just barely...I was sweating! SOOOOOOOO frustrating.
By the time I got back to hubby, my legs were shaking uncontrollably and I asked to go back to the car to wait while he did the grocery run around. I have never done this before.
I am so frustrated. SO frustrated. I can't even type coherently....
I KNOW HSCT stopped my MS. I KNOW I may never see improvement. I KNOW all this but I want improvement SOOOOO bad. I KNOW this attitude at the moment doesn't help (and it is rare) but I'm just SOOOO p*ssed. WHY didn't I do HSCT sooner? WHY am I having to live like this? The ol' "WHY ME" is rearing its ugly head. I'd be SUCH an awesome, active, busy, fun mum and wife without these 'MS leftovers'. Ugh.
Sorry for the vent. I pray daily for improvement now. I KNOW I'm selfish - all I wanted from HSCT was to stop MS and it's done that. I know it has....now I just want more.
Ugh. I hate when I'm like this. I'm teary, frustrated, miserable. My poor Hubby and Daughter.
And on such a beautiful day. We should be canoeing, SUPing, riding our bikes....instead, I'm sitting in front of the computer in tears; Piper (thankfully) is blissfully unaware at her friend's party; and poor Andy has no idea what to do so has retreated to Bunnings (no doubt bored with our marriage)....
Ugh. I am NOT this person. In the words of the GREAT Taylor Swift....I need to 'Shake it Off'....
Thursday, 14 January 2016
DAY + 115 - WHAT CAN I TELL YOU?
I can't believe my last post was late November! That's disgusting! Hopefully you have all been far too busy enjoying Christmas, New Years, Summer and holidays to worry about reading my blog!
I had a quiet Christmas but was pretty stoked at myself for doing ALL my Christmas shopping via the world wide web!! No car park squabbles; no sneaking out without my daughter; no going from shop to shop trying to find things etc! One thing I was bummed about was we didn't get out annual Christmas photo with Santa....BUT I'm guessing he'll be at the shopping centre next year and it will be a story to tell when we're explaining WHY there is no 2015 photo! As for the online shopping - I'm seriously considering doing the same this year!! It was bloody brilliant!
We had Christmas lunch with my family and dinner with my hubby's brother and cousin and their families (his parents and other brother live in Qld)....so pretty low key. I missed out on going to Christmas Eve Mass (which I LOVE) and missed any and all Chrissy get togethers and drinks ... but not to worry... there's always this year!
On New Year's Eve, I reached +100 days (since transplant) and this meant I was allowed to start to get out and re-connect with the world!! I am (still) a little hesitant in this regard but we did go to Robe (a local beach village that I LOVE) for 4 days. It was MUCH different this year though as I didn't get to the beach much or down the street (as the population of the town swells to incredible numbers over Summer), but I did go for coffee (of course), 1 day at the beach digging holes with my daughter, the ice cream shop etc. We had a nail salon night and played board games and such with the kids at night so enjoyed lots of laughs with family and friends!
I headed up to Adelaide from Robe and saw my Haematologist on 4 January. My bloods were again all within the normal range and he gave me the green light to get out and about more and 'carry on' with life. So this is exciting even though I'm still being careful. I haven't really done too much with this new-found freedom. I went to a quiet session at the movies; went out for dinner for my mums birthday; more coffee; gone to mum and dad's for a swim....so not much at all. I'm yet to venture into a department store or grocery store (or any crowded venue) as yet but I'm heading back to work NEXT WEEK so things will get back to (safe) normal quite quickly!
I'm so excited about returning to work. The first couple of weeks will be with skeleton staff and no students (who I don't deal with anyway), and then the term starts! I'm not too nervous about this as I work in an office by myself and everyone is aware of my situation. I am starting back part-time and will build from there! My work has been INCREDIBLE and I can't wait to be back there!
Unfortunately, I am yet to see any improvements in my symptoms but the procedure only ever claimed to HALT the disease. Many patients (I mean MANY) have had marked improvement in their symptoms so I now (selfishly) want that too (whereas before I just wanted to stop it)! After reading many other patient blogs, I understand that improvements can take a while to become apparent - especially considering I had Primary Progressive MS and had it for so long (14 years) but I pray and hope that this year will see me walking better, faster, longer etc...and hopefully in a) heels and b) thongs! I don't see my netball career being resurrected but it WOULD be nice to ACTIVELY participate in my daughter's/hubby's life a bit more, walk along the beach, shop for more than 5 mins in a shopping centre, walk to the park etc.
What else can I document...Oh yes - I have TERRIBLE nights! My legs ache and I have this restlessness with them so I'm tossing and turning all night! I'm also having hot spells (only at night) so the quilt is on/off/on/off also. Imagine this for my husband: tossing, turning, sighing, throwing covers off, turning, putting covers back on...daughter coming in a 2am (Argh!)....too hot, turn over, too cold, stretch, back hurts; curl up...nope - stretch out again....oops- too hot...covers off and so on. All night, every night! This is a concern with work looming! :)
I'm wondering if the hot flushes are the start of menopause (OMG when did I get so OLD). I understand that this can be brought on by the procedure and I haven't had a period in 3 months so....yeah - there's that. Time will tell I guess and I'm not particularly fussed either way.
My hair is SLOWLY growing back and I'm comfortable not wearing a wig or scarf even though I know I look hideous. I'm used to it now and "it is what it is" so I will just persevere with it. It is definitely not blonde anymore and I think it's coming back fluffy and GREY (to add to the menopause above)! Oh well - it IS growing so let's just be thankful for that!! :)
As I'm sure to have told you, I started some PT work. We stopped over Chrissy / New Year and I have been so slack with bike riding (I have a stationary bike here) and doing my home exercises. It's been HOT here in SA and I am embarrassed to say it just fell by the wayside with Christmas, New Year, Robe, school holidays etc. My whole exercise regime at home takes about 30 mins so I have no excuse but I will start with gusto again next week. I have put it out there now (to you all) so I have to come through with the goods! I'm also starting a 30 day clean eating 'challenge' in February and starting to take some supplements....so come March - I'll be FAB-U-LOUS I'm sure!
If you don't know me, I am fairly small naturally but have been housing a rather um..."spongy" belly since my return from Russia. I am (still) telling myself that this is WITHOUT DOUBT bloating due to the steroids I had in Russia but ... 3.5 months down the track I'm not sure how much longer I can convince myself of this!! :) Mind you - in my defence, I haven't been able to eat fresh fruit and veg since my return so I've eaten a lot of processed...er....crap (I've also been eating tuna, rice, steamed veggies, protein etc as much as I can....but who can turn down a packet of Kettle Chips)?! I'm finally allowed to eat fresh fruit and veg and we've enjoyed lots of salads with (overly) washed fruit and veg!! (Yes - I'm a tad OCD)! I cannot tell you how great Watermelon tastes after you've been denied it for a few months...in Summer!!!!! Oh my Lord!!
Okay - I think that's really it for now! Thank you for your continued support! I remain positive and thankful to you all and for the opportunity to have this amazing treatment!
Let's hope my next entry talks about the incredible improvement in my gait and all things wonderful!
Love to all! Mary OUT.
I had a quiet Christmas but was pretty stoked at myself for doing ALL my Christmas shopping via the world wide web!! No car park squabbles; no sneaking out without my daughter; no going from shop to shop trying to find things etc! One thing I was bummed about was we didn't get out annual Christmas photo with Santa....BUT I'm guessing he'll be at the shopping centre next year and it will be a story to tell when we're explaining WHY there is no 2015 photo! As for the online shopping - I'm seriously considering doing the same this year!! It was bloody brilliant!
We had Christmas lunch with my family and dinner with my hubby's brother and cousin and their families (his parents and other brother live in Qld)....so pretty low key. I missed out on going to Christmas Eve Mass (which I LOVE) and missed any and all Chrissy get togethers and drinks ... but not to worry... there's always this year!
On New Year's Eve, I reached +100 days (since transplant) and this meant I was allowed to start to get out and re-connect with the world!! I am (still) a little hesitant in this regard but we did go to Robe (a local beach village that I LOVE) for 4 days. It was MUCH different this year though as I didn't get to the beach much or down the street (as the population of the town swells to incredible numbers over Summer), but I did go for coffee (of course), 1 day at the beach digging holes with my daughter, the ice cream shop etc. We had a nail salon night and played board games and such with the kids at night so enjoyed lots of laughs with family and friends!
I headed up to Adelaide from Robe and saw my Haematologist on 4 January. My bloods were again all within the normal range and he gave me the green light to get out and about more and 'carry on' with life. So this is exciting even though I'm still being careful. I haven't really done too much with this new-found freedom. I went to a quiet session at the movies; went out for dinner for my mums birthday; more coffee; gone to mum and dad's for a swim....so not much at all. I'm yet to venture into a department store or grocery store (or any crowded venue) as yet but I'm heading back to work NEXT WEEK so things will get back to (safe) normal quite quickly!
I'm so excited about returning to work. The first couple of weeks will be with skeleton staff and no students (who I don't deal with anyway), and then the term starts! I'm not too nervous about this as I work in an office by myself and everyone is aware of my situation. I am starting back part-time and will build from there! My work has been INCREDIBLE and I can't wait to be back there!
Unfortunately, I am yet to see any improvements in my symptoms but the procedure only ever claimed to HALT the disease. Many patients (I mean MANY) have had marked improvement in their symptoms so I now (selfishly) want that too (whereas before I just wanted to stop it)! After reading many other patient blogs, I understand that improvements can take a while to become apparent - especially considering I had Primary Progressive MS and had it for so long (14 years) but I pray and hope that this year will see me walking better, faster, longer etc...and hopefully in a) heels and b) thongs! I don't see my netball career being resurrected but it WOULD be nice to ACTIVELY participate in my daughter's/hubby's life a bit more, walk along the beach, shop for more than 5 mins in a shopping centre, walk to the park etc.
What else can I document...Oh yes - I have TERRIBLE nights! My legs ache and I have this restlessness with them so I'm tossing and turning all night! I'm also having hot spells (only at night) so the quilt is on/off/on/off also. Imagine this for my husband: tossing, turning, sighing, throwing covers off, turning, putting covers back on...daughter coming in a 2am (Argh!)....too hot, turn over, too cold, stretch, back hurts; curl up...nope - stretch out again....oops- too hot...covers off and so on. All night, every night! This is a concern with work looming! :)
I'm wondering if the hot flushes are the start of menopause (OMG when did I get so OLD). I understand that this can be brought on by the procedure and I haven't had a period in 3 months so....yeah - there's that. Time will tell I guess and I'm not particularly fussed either way.
My hair is SLOWLY growing back and I'm comfortable not wearing a wig or scarf even though I know I look hideous. I'm used to it now and "it is what it is" so I will just persevere with it. It is definitely not blonde anymore and I think it's coming back fluffy and GREY (to add to the menopause above)! Oh well - it IS growing so let's just be thankful for that!! :)
As I'm sure to have told you, I started some PT work. We stopped over Chrissy / New Year and I have been so slack with bike riding (I have a stationary bike here) and doing my home exercises. It's been HOT here in SA and I am embarrassed to say it just fell by the wayside with Christmas, New Year, Robe, school holidays etc. My whole exercise regime at home takes about 30 mins so I have no excuse but I will start with gusto again next week. I have put it out there now (to you all) so I have to come through with the goods! I'm also starting a 30 day clean eating 'challenge' in February and starting to take some supplements....so come March - I'll be FAB-U-LOUS I'm sure!
If you don't know me, I am fairly small naturally but have been housing a rather um..."spongy" belly since my return from Russia. I am (still) telling myself that this is WITHOUT DOUBT bloating due to the steroids I had in Russia but ... 3.5 months down the track I'm not sure how much longer I can convince myself of this!! :) Mind you - in my defence, I haven't been able to eat fresh fruit and veg since my return so I've eaten a lot of processed...er....crap (I've also been eating tuna, rice, steamed veggies, protein etc as much as I can....but who can turn down a packet of Kettle Chips)?! I'm finally allowed to eat fresh fruit and veg and we've enjoyed lots of salads with (overly) washed fruit and veg!! (Yes - I'm a tad OCD)! I cannot tell you how great Watermelon tastes after you've been denied it for a few months...in Summer!!!!! Oh my Lord!!
Okay - I think that's really it for now! Thank you for your continued support! I remain positive and thankful to you all and for the opportunity to have this amazing treatment!
Let's hope my next entry talks about the incredible improvement in my gait and all things wonderful!
Love to all! Mary OUT.
Thursday, 26 November 2015
ADELAIDE VISIT TO DR WICKHAM
So Mum and I went to Adelaide on 5 November for me to see Dr Wickham (my haematologist)!
This was supposed to be an easy day trip - up at 10.15am, back by 5pm.
We caught the 10.15am flight without incident. As we drove out to the airport, mum told me how she used to ride to school from Sunnybrae Road....when she was about 5 years old!!!! Oh my goodness times have changed! No way would I let my daughter ride her bike to school...and she's 9!
Anyway, I digress. We went straight to the Doctor's clinic and had a coffee in their coffee shop until my 1.20pm appointment.
Dr W was fantastic and said all my bloods are normal which is fantastic! He was happy with how everything is going and after a good chat and a couple of mouth swabs I was good to go.
He gave me antibiotics for my ongoing sinus infection (that'll be 4 weeks of antibiotics) as I just can't shake it. He also gave me 6 month prescriptions for Bactrim and Valtrex.
I've been so lucky with Doctors as he's just brilliant. He's so helpful with the 'travelling from Mt Gambier' thing too and I don't have to see him again until 4 January (I will see Ronan in December for bloods)....
So - we finished with Dr W and went straight back to the airport. We paid $100 to get on the earlier (3.45pm) flight. We hadn't had lunch but (I don't know about poor mum) but I was fine.
We used a wheelchair and thank goodness we did as the story goes on (plus Gate 10 is a million miles away (as I know from previous trips))!
So we got on the 3.45pm flight (me all masked up etc). About 20 minutes from Mt Gambier, the plane turned around due to a technical fault and went all the way back to Adelaide. We disembarked and went back to wait in the airport. The 5.10pm flight left (which we were originally supposed to be on) left and we left again soon after (that $100 for the earlier flight didn't go far!).
This time we made it all the way to Mt G before circling around for about 1/2 hour above the fog before once again heading back to Adelaide. By now it was about 9pm! Once we arrived back in Adelaide they explained there would be no flights to Mt G and we had to find our own accommodation in Adelaide, then we were to ring REX at 5.30am to find out our new flight time.
What The??!!
So mum and I went and stayed at Glenelg and had a much needed Pizza for tea! Me and Mum both without medications and me being on 2 flights and the airport when I'm supposed to be avoiding germs! GREAT!
I rang at 5.30am the next morning and we got on a 10.40am flight! Oh Man! Even with 3 flights grounded the day before, they didn't fill up the flight and others had to wait until 3.40pm!! C RAZY!
Anyway - all's well that ends well but Oh My Goodness what a debacle! Thank Goodness I had my mum with me!
Another girl on the flight was fabulous and helped with a wheelchair etc and our stewardess was also fantastic (by chance, we also had her the following morning)!
We've already decided that we're driving in January!!
This was supposed to be an easy day trip - up at 10.15am, back by 5pm.
We caught the 10.15am flight without incident. As we drove out to the airport, mum told me how she used to ride to school from Sunnybrae Road....when she was about 5 years old!!!! Oh my goodness times have changed! No way would I let my daughter ride her bike to school...and she's 9!
Anyway, I digress. We went straight to the Doctor's clinic and had a coffee in their coffee shop until my 1.20pm appointment.
Dr W was fantastic and said all my bloods are normal which is fantastic! He was happy with how everything is going and after a good chat and a couple of mouth swabs I was good to go.
He gave me antibiotics for my ongoing sinus infection (that'll be 4 weeks of antibiotics) as I just can't shake it. He also gave me 6 month prescriptions for Bactrim and Valtrex.
I've been so lucky with Doctors as he's just brilliant. He's so helpful with the 'travelling from Mt Gambier' thing too and I don't have to see him again until 4 January (I will see Ronan in December for bloods)....
So - we finished with Dr W and went straight back to the airport. We paid $100 to get on the earlier (3.45pm) flight. We hadn't had lunch but (I don't know about poor mum) but I was fine.
We used a wheelchair and thank goodness we did as the story goes on (plus Gate 10 is a million miles away (as I know from previous trips))!
So we got on the 3.45pm flight (me all masked up etc). About 20 minutes from Mt Gambier, the plane turned around due to a technical fault and went all the way back to Adelaide. We disembarked and went back to wait in the airport. The 5.10pm flight left (which we were originally supposed to be on) left and we left again soon after (that $100 for the earlier flight didn't go far!).
This time we made it all the way to Mt G before circling around for about 1/2 hour above the fog before once again heading back to Adelaide. By now it was about 9pm! Once we arrived back in Adelaide they explained there would be no flights to Mt G and we had to find our own accommodation in Adelaide, then we were to ring REX at 5.30am to find out our new flight time.
What The??!!
So mum and I went and stayed at Glenelg and had a much needed Pizza for tea! Me and Mum both without medications and me being on 2 flights and the airport when I'm supposed to be avoiding germs! GREAT!
I rang at 5.30am the next morning and we got on a 10.40am flight! Oh Man! Even with 3 flights grounded the day before, they didn't fill up the flight and others had to wait until 3.40pm!! C RAZY!
Anyway - all's well that ends well but Oh My Goodness what a debacle! Thank Goodness I had my mum with me!
Another girl on the flight was fabulous and helped with a wheelchair etc and our stewardess was also fantastic (by chance, we also had her the following morning)!
We've already decided that we're driving in January!!
Wednesday, 25 November 2015
DAY +65 (SINCE TRANSPLANT)...
Well Hello Hello! I know it's been a while since my last update, but I really don't have too much to report! I am now at Day+65 which means it was 65 days ago that I had my stem cells transplanted back into my body.
I have been on 'house arrest' since I got home from Russia (I think Oscar Pistorius is doing it wrong!!) This basically means no visitors, no going out in public other than when necessary (eg Doctor visits) etc. When I originally came home, after being told my bloods were all normal, I had a few people over (my BFF, my sisters (who stood either outside or 5 metres away from me), Mum and Dad, a friend from work etc) but I was told by fellow HSCT patients who have gone before me - that it was FAR too early to be receiving visitors! Oops!
So now I have become quite anxious about going out and having people over, even though my Haematologist says it is fine as long as they are not sick. My bloods are in the normal range and have been since I returned...He also said I was fine to go out but to be sensible (eg no crowds) but I really am quite panicky about it all !
A fellow patient and friend (who arrived in Russia 2 weeks after me) has contracted whooping cough and she was following all the rules perfectly so that freaked me out too! (she's doing fine by the way)...
I have not kissed my daughter or hubby on the lips since returning but have to have cuddles with Piper (oh - and Andy) each night when we are reading or talking about the day etc. Hand hygiene is my big thing and poor Pipes can't cough without me hollering for her to get the Purell !!
This week, I have started doing PT with a friend here in my home town. I feel quite pathetic with what I can/can't do but I also know that we have to start somewhere. It's incredibly frustrating when (in my 'glory days') I was at the gym EVERY DAY doing 2 classes, treadmill, bike, rower...etc. I feel like I should be able to walk back in and at least do the basics but everything is so bloody hard and my weights are embarrassing! STILL - it's great to go and do 'something'. The gym girls have been fantastic as they let me come when they are closed so there are no other people there. I love going but am totally embarrassed by my limitations. Let's hope I can report major improvements in that area in the coming months! There is a "GTS" machine that I'd love to use but it's upstairs and I don't think I could even get up there at the moment...well, I could but it would be ugly! :)
Symptom wise, I feel much the same as I did before I left. Thankfully I no longer feel weaker than before I left but I certainly haven't noticed any obvious improvement either. Of course, I have to keep reminding myself that the 'promise' of HSCT is to only HALT the disease and the 'win' is that I no longer have MS in my body - how freaking awesome is that! My Mum, Dad and Andy all say they think I'm walking better but I (hate to) disagree. It feels pretty much exactly the same...(early days Mary, early days)....
Because I have had MS for so long and the scar tissue/lesions on my myelin sheath/brain would be well and truly formed, in reality it is unlikely I will see big improvements but I pray, hope, pray that I will see enough improvement to get some decent quality of life back - for me that means walking to netball to watch Piper unaided, or walking on the beach for a kilometre or two (or three!), walking out through the surf without falling, buying shoes without stressing about heel height or whether they will fall off because they have no back and my feet can't hold them on (thongs!), wandering around the shops for more than 5 mins. I would LOVE to play netty again but I know that is stretching the dream a little far....but 2kms on the beach would be just wonderful! I already have a few ladies I'd like to tag along...with champagne in hand ! :) :)
Anyway - I am at home and mostly resting. As I think I've said before, I try to do a little job per day and the last couple of weeks have seen me clean out my pantry and fridge, some kitchen drawers, a few more of my daughter's toys, Christmas shopping 95% done etc. I am also doing some work from home which is a God send (speaking of which I need to login and do some more)!
So my report is this: I am fine mentally, happy, etc. I am a little (lot) bored with my own company and a little (lot) lonely. My hubby and daughter have been busy every weekend since I returned which would normally be fantastic but, when you're stuck at home, is so frustrating. They've been to the local show, Christmas parade, my niece's birthday, dance concert, park opening etc. BUT I know this is but a season and in 12 months time, hopefully I am a different person!
As mentioned, my old symptoms remain (so far) and I feel I am pretty much the same as when I left. BUT!! I remain incredibly THANKFUL that I have stopped this disease.
I am THANKFUL for your support and the incredible year I have had in preparing for my trip.
I am THANKFUL for my family and friends.
I am THANKFUL for my health (now that I no longer have MS).
I am THANKFUL for my hubby's patience.
I am THANKFUL that I am getting Netflix next week (thanks to bigger download limit) :)
I am THANKFUL for my renewed faith.
I am THANKFUL for my wonderful workplace and their support (and for giving me something to do to keep my brain ticking over).
So no matter what, I am thankful that I had this opportunity and continue to pray, pray, pray for some improvement....okay - better log in and do some 'real' work...although hang on...Ellen's nearly on! :)
Take care and hope your Christmas preparations are moving along nicely, you're gearing up for holidays/annual leave, the weather is good where you are and you're happy and healthy!
For now....Mary OUT!
I have been on 'house arrest' since I got home from Russia (I think Oscar Pistorius is doing it wrong!!) This basically means no visitors, no going out in public other than when necessary (eg Doctor visits) etc. When I originally came home, after being told my bloods were all normal, I had a few people over (my BFF, my sisters (who stood either outside or 5 metres away from me), Mum and Dad, a friend from work etc) but I was told by fellow HSCT patients who have gone before me - that it was FAR too early to be receiving visitors! Oops!
So now I have become quite anxious about going out and having people over, even though my Haematologist says it is fine as long as they are not sick. My bloods are in the normal range and have been since I returned...He also said I was fine to go out but to be sensible (eg no crowds) but I really am quite panicky about it all !
A fellow patient and friend (who arrived in Russia 2 weeks after me) has contracted whooping cough and she was following all the rules perfectly so that freaked me out too! (she's doing fine by the way)...
I have not kissed my daughter or hubby on the lips since returning but have to have cuddles with Piper (oh - and Andy) each night when we are reading or talking about the day etc. Hand hygiene is my big thing and poor Pipes can't cough without me hollering for her to get the Purell !!
This week, I have started doing PT with a friend here in my home town. I feel quite pathetic with what I can/can't do but I also know that we have to start somewhere. It's incredibly frustrating when (in my 'glory days') I was at the gym EVERY DAY doing 2 classes, treadmill, bike, rower...etc. I feel like I should be able to walk back in and at least do the basics but everything is so bloody hard and my weights are embarrassing! STILL - it's great to go and do 'something'. The gym girls have been fantastic as they let me come when they are closed so there are no other people there. I love going but am totally embarrassed by my limitations. Let's hope I can report major improvements in that area in the coming months! There is a "GTS" machine that I'd love to use but it's upstairs and I don't think I could even get up there at the moment...well, I could but it would be ugly! :)
Symptom wise, I feel much the same as I did before I left. Thankfully I no longer feel weaker than before I left but I certainly haven't noticed any obvious improvement either. Of course, I have to keep reminding myself that the 'promise' of HSCT is to only HALT the disease and the 'win' is that I no longer have MS in my body - how freaking awesome is that! My Mum, Dad and Andy all say they think I'm walking better but I (hate to) disagree. It feels pretty much exactly the same...(early days Mary, early days)....
Because I have had MS for so long and the scar tissue/lesions on my myelin sheath/brain would be well and truly formed, in reality it is unlikely I will see big improvements but I pray, hope, pray that I will see enough improvement to get some decent quality of life back - for me that means walking to netball to watch Piper unaided, or walking on the beach for a kilometre or two (or three!), walking out through the surf without falling, buying shoes without stressing about heel height or whether they will fall off because they have no back and my feet can't hold them on (thongs!), wandering around the shops for more than 5 mins. I would LOVE to play netty again but I know that is stretching the dream a little far....but 2kms on the beach would be just wonderful! I already have a few ladies I'd like to tag along...with champagne in hand ! :) :)
Anyway - I am at home and mostly resting. As I think I've said before, I try to do a little job per day and the last couple of weeks have seen me clean out my pantry and fridge, some kitchen drawers, a few more of my daughter's toys, Christmas shopping 95% done etc. I am also doing some work from home which is a God send (speaking of which I need to login and do some more)!
So my report is this: I am fine mentally, happy, etc. I am a little (lot) bored with my own company and a little (lot) lonely. My hubby and daughter have been busy every weekend since I returned which would normally be fantastic but, when you're stuck at home, is so frustrating. They've been to the local show, Christmas parade, my niece's birthday, dance concert, park opening etc. BUT I know this is but a season and in 12 months time, hopefully I am a different person!
As mentioned, my old symptoms remain (so far) and I feel I am pretty much the same as when I left. BUT!! I remain incredibly THANKFUL that I have stopped this disease.
I am THANKFUL for your support and the incredible year I have had in preparing for my trip.
I am THANKFUL for my family and friends.
I am THANKFUL for my health (now that I no longer have MS).
I am THANKFUL for my hubby's patience.
I am THANKFUL that I am getting Netflix next week (thanks to bigger download limit) :)
I am THANKFUL for my renewed faith.
I am THANKFUL for my wonderful workplace and their support (and for giving me something to do to keep my brain ticking over).
So no matter what, I am thankful that I had this opportunity and continue to pray, pray, pray for some improvement....okay - better log in and do some 'real' work...although hang on...Ellen's nearly on! :)
Take care and hope your Christmas preparations are moving along nicely, you're gearing up for holidays/annual leave, the weather is good where you are and you're happy and healthy!
For now....Mary OUT!
Wednesday, 21 October 2015
DAY +30 - HAPPY ANNIVERSARY TO ME!
Today marks my 1 month transplant 'anniversary' or "Day +30" since my new stem cells were returned to my body!
I thought I would document how I'm going ... mostly so that in 6 months time I can look back and see how far I've come!! :)
I have been back in Australia for 14 days. Wow! How quickly time flies!
I initially came back and in the first few days home I had cleaned out my bathroom cupboards and drawers of all my old make-up, creams etc; I'd cleaned out my daughters wardrobe and drawers of clothes that no longer fit; caught up on all my washing and ironing; tidied up the spare room; etc...
I was told by fellow HSCT'ers to SLOW DOWN and REST. Apparently doing WAYYYY to much! And just to prove a point - today has seen me spend the entire morning in bed...so tired!
I now concentrate on 1 job a day and try to rest as much as possible. I've set up camp for myself on the couch and worked on my 'couch-groove' (think Homer Simpson)...some days I feel really great, some days I am so so tired (like today). Sleep patterns are all over the shop too - I understand from the different medications still in my body which will slowly work themselves out.
I've been very spoilt with meals so far - with mum, my sisters and friends donating meals for us! Particularly handy when Andy went to Tough Mudder last weekend or on days like today when I'm just shattered.
I have not left home since I got here! I will go for an appointment with my GP tomorrow to get blood results (had bloods done at home earlier this week) and a catch up....but otherwise I've been in lockdown. Depending on what my GP says, I might take mum for a coffee somewhere quiet...wouldn't that be nice!!
If these bloods come back 'normal' I'm also going to ask if I can do the school run (not getting out of the car) or some other little job(s). I'm also keen to start physio but I expect that is some weeks away.
("REST Mary, REST")!
Through friends here (thanks Tars/Nikki), Dad has organised a stationery bike for home and so I'm keen to use that even for 5 mins each day. Hopefully this builds up some muscle and isn't too taxing on my body.
My symptoms at the moment aren't great. To me - my legs feel weaker than before I left but if I'm truly honest with myself and think about how they were when I left...they are probably much the same as just before Russia - otherwise only marginally worse. It's super frustrating but, reading a lot of other blogs and files on the HSCT forum, this is completely normal so I am trying to relax about it. REST is the best thing I can do for myself...
I can't really say if other minor symptoms have change or not....as nothing else other than my legs, was really that bad. Bladder urgency was a problem (sorry readers!) but because I'm just at home, I couldn't tell you if that's improved or not....
I do know I still can't handle the heat well as I was sitting out in the sun on Monday and by the time I came in, it was very, very hard to walk.
I have had a few visitors and will slowly accept more. Mum and Dad come by regularly, my sisters have been up, my in-laws and my darling best friend from here in the Mount. I've also seen a good friend from work and my neighbour popped over for a chat on the grass last weekend. I haven't worn a mask yet for visitors but Piper has a bad cough so am wearing around her at the moment :(
My haematologist said it is more important to have good hand cleanliness, hygiene (and don't hug/kiss everyone) so I'm concentrating on that...
So that's month 1 done and done. Nothing ground-breaking to report and just recovery and REST. BUT super-optimistic for the next few months.
I thought I would document how I'm going ... mostly so that in 6 months time I can look back and see how far I've come!! :)
I have been back in Australia for 14 days. Wow! How quickly time flies!
I initially came back and in the first few days home I had cleaned out my bathroom cupboards and drawers of all my old make-up, creams etc; I'd cleaned out my daughters wardrobe and drawers of clothes that no longer fit; caught up on all my washing and ironing; tidied up the spare room; etc...
I was told by fellow HSCT'ers to SLOW DOWN and REST. Apparently doing WAYYYY to much! And just to prove a point - today has seen me spend the entire morning in bed...so tired!
I now concentrate on 1 job a day and try to rest as much as possible. I've set up camp for myself on the couch and worked on my 'couch-groove' (think Homer Simpson)...some days I feel really great, some days I am so so tired (like today). Sleep patterns are all over the shop too - I understand from the different medications still in my body which will slowly work themselves out.
I've been very spoilt with meals so far - with mum, my sisters and friends donating meals for us! Particularly handy when Andy went to Tough Mudder last weekend or on days like today when I'm just shattered.
I have not left home since I got here! I will go for an appointment with my GP tomorrow to get blood results (had bloods done at home earlier this week) and a catch up....but otherwise I've been in lockdown. Depending on what my GP says, I might take mum for a coffee somewhere quiet...wouldn't that be nice!!
If these bloods come back 'normal' I'm also going to ask if I can do the school run (not getting out of the car) or some other little job(s). I'm also keen to start physio but I expect that is some weeks away.
("REST Mary, REST")!
Through friends here (thanks Tars/Nikki), Dad has organised a stationery bike for home and so I'm keen to use that even for 5 mins each day. Hopefully this builds up some muscle and isn't too taxing on my body.
My symptoms at the moment aren't great. To me - my legs feel weaker than before I left but if I'm truly honest with myself and think about how they were when I left...they are probably much the same as just before Russia - otherwise only marginally worse. It's super frustrating but, reading a lot of other blogs and files on the HSCT forum, this is completely normal so I am trying to relax about it. REST is the best thing I can do for myself...
I can't really say if other minor symptoms have change or not....as nothing else other than my legs, was really that bad. Bladder urgency was a problem (sorry readers!) but because I'm just at home, I couldn't tell you if that's improved or not....
I do know I still can't handle the heat well as I was sitting out in the sun on Monday and by the time I came in, it was very, very hard to walk.
I have had a few visitors and will slowly accept more. Mum and Dad come by regularly, my sisters have been up, my in-laws and my darling best friend from here in the Mount. I've also seen a good friend from work and my neighbour popped over for a chat on the grass last weekend. I haven't worn a mask yet for visitors but Piper has a bad cough so am wearing around her at the moment :(
My haematologist said it is more important to have good hand cleanliness, hygiene (and don't hug/kiss everyone) so I'm concentrating on that...
So that's month 1 done and done. Nothing ground-breaking to report and just recovery and REST. BUT super-optimistic for the next few months.
Saturday, 10 October 2015
G'DAY MATE
After a late night (remember - I'd slept 8 hours on the plane)....we woke to a beautiful day in Glenelg. Dad and Andy went on a coffee run and we all just chilled.
My Haematologist appointment wasn't until 2pm so we did a run to Harbour Town (Me, Mum and Dad sat in the car while ANDY and Piper went for a shop looking for new runners), then we went to the Tennyson Centre.
My Haematologist had come in especially to see me (legend) and has worked out a plan so I don't have to travel to Adelaide every 2 weeks. Between he and my awesome local GP, we can do bloods every 2 weeks and they will work together re results.
Confirming all that Dr F had told me, he was very thorough and suggested I lay low for a little while but to not get crazy about it, Steer clear of sick people, crowds etc but relax at home and in a couple of weeks, start to do a job each day (out of the house)...avoiding crowds, etc.
I can do school drop off soon (staying in the car) but that's exciting (don't judge) !!
He confirmed my fears about all you Thailand, Bali, etc travellers but said that they could either go get checked out if they really wanted to but otherwise just wait a few weeks to see them.....so that's fine too as mentioned above, I'll be hibernating for a bit.
My legs (even as I type this today) are sooooo weak (again - think 10 times worse than before I left) so I am happy to be hanging around home for a couple of weeks in the hope that I can get some strength back before anyone sees me...cos I think you'll be shocked. I'm going to do 'little exercises' just to wake up my muscles if nothing else.
Mum and Dad think I'm walking better in that I'm not dropping my foot but I know within myself that I am SOOO weak (frustrating much)...but both Dr F and my Haem said this is because of chemo / blood levels / living in a 3m x 2m box for 30 days and NOT MS (which makes sense because of course I DON'T HAVE MS)!! But I did see other patients walking out so much better so it IS frustrating.
My bloods are great/normal; I have a few medications to take; a LOT to learn about food; take my temp each day; LISTEN TO MY BODY (so hard); and I'm DOING IT!! RECOVERY is absolutely as important as the procedure so I need to do it right!
After doing some bloods, we drove home around 4pm Friday. Isn't it crazy when you go away and then suddenly it's like you NEVER left! We stopped at Tailem Bend (SO normal); the scenery was SO FAMILIAR...how can I have seriously just been away for 5 weeks and CHANGED MY LIFE SO COMPLETELY?!
Andy pulled over just near the airport. I was thinking we were avoiding a Roo on the road....and then I saw the beautiful sign that Dad had made (and thanks to Milla also). So MORE tears (and again now).
So....I'm sorry...but MY DAD beats your DAD.
Said sign is now in my backyard. So special.
And that it. I'm home!!!!
As promised, my little sis brought food yesterday but then (virtually) ran away...I'll hug her eventually!! :) She'll pick up Piper tomorrow (tooting from the safety of the car)!! :)
My big sis has been sick as has my niece so I'll see them in a few weeks...it's great how people 'get it'...very comforting.
Poor Andy sneezed this morning and Piper had him masked up and "Aquimed" before he knew what was happening! My poor dog Basil just looks at me through the glass door in total bafflement.....and the cat...well she's a cat - she just doesn't give two hoots.
Andy's gone to watch Bathurst with his Dad and Piper is playing with her cousin. I will clean up the lunch mess and probably rest after that (again - SO frustrating).
School is back tomorrow so I'll make sure Piper's bag doesn't have 2 week old food in it (my bet is it does).
I didn't think I'd be good at the "REST" thing....but I think I'll be fine. These legs will ONLY do so much before they dummy-spit it at me. But it's all good. I'm so happy. I don't have MS. These legs will sort themselves out....I feel well...I had an amazing experience (and I mean the entire year)...I am so grateful to everyone....
I just now have to do THIS BIT (recovery) well as this is as important as everything else. So I have my game face on and will do whatever I'm told to do or told not to do.
I'll continue to blog if something of interest happens or if you have questions but I doubt it'll be daily..."Got up; had breakie; got Piper ready for school; meditated; did exercise; slept; had lunch/watched Ellen; cleaned up after lunch; slept; put stuff in slow cooker; slept; etc"... could get real tired real quick!
If you have questions - inbox me on Facebook and I will do my best to answer anything!
Thanks for reading so far. My photo's have been RAW (and if you know me - you'll know that's been REALLY hard for me) but I wanted to be as honest as I could.
My Haematologist appointment wasn't until 2pm so we did a run to Harbour Town (Me, Mum and Dad sat in the car while ANDY and Piper went for a shop looking for new runners), then we went to the Tennyson Centre.
My Haematologist had come in especially to see me (legend) and has worked out a plan so I don't have to travel to Adelaide every 2 weeks. Between he and my awesome local GP, we can do bloods every 2 weeks and they will work together re results.
Confirming all that Dr F had told me, he was very thorough and suggested I lay low for a little while but to not get crazy about it, Steer clear of sick people, crowds etc but relax at home and in a couple of weeks, start to do a job each day (out of the house)...avoiding crowds, etc.
I can do school drop off soon (staying in the car) but that's exciting (don't judge) !!
He confirmed my fears about all you Thailand, Bali, etc travellers but said that they could either go get checked out if they really wanted to but otherwise just wait a few weeks to see them.....so that's fine too as mentioned above, I'll be hibernating for a bit.
My legs (even as I type this today) are sooooo weak (again - think 10 times worse than before I left) so I am happy to be hanging around home for a couple of weeks in the hope that I can get some strength back before anyone sees me...cos I think you'll be shocked. I'm going to do 'little exercises' just to wake up my muscles if nothing else.
Mum and Dad think I'm walking better in that I'm not dropping my foot but I know within myself that I am SOOO weak (frustrating much)...but both Dr F and my Haem said this is because of chemo / blood levels / living in a 3m x 2m box for 30 days and NOT MS (which makes sense because of course I DON'T HAVE MS)!! But I did see other patients walking out so much better so it IS frustrating.
My bloods are great/normal; I have a few medications to take; a LOT to learn about food; take my temp each day; LISTEN TO MY BODY (so hard); and I'm DOING IT!! RECOVERY is absolutely as important as the procedure so I need to do it right!
After doing some bloods, we drove home around 4pm Friday. Isn't it crazy when you go away and then suddenly it's like you NEVER left! We stopped at Tailem Bend (SO normal); the scenery was SO FAMILIAR...how can I have seriously just been away for 5 weeks and CHANGED MY LIFE SO COMPLETELY?!
Andy pulled over just near the airport. I was thinking we were avoiding a Roo on the road....and then I saw the beautiful sign that Dad had made (and thanks to Milla also). So MORE tears (and again now).
So....I'm sorry...but MY DAD beats your DAD.
Said sign is now in my backyard. So special.
And that it. I'm home!!!!
As promised, my little sis brought food yesterday but then (virtually) ran away...I'll hug her eventually!! :) She'll pick up Piper tomorrow (tooting from the safety of the car)!! :)
My big sis has been sick as has my niece so I'll see them in a few weeks...it's great how people 'get it'...very comforting.
Poor Andy sneezed this morning and Piper had him masked up and "Aquimed" before he knew what was happening! My poor dog Basil just looks at me through the glass door in total bafflement.....and the cat...well she's a cat - she just doesn't give two hoots.
Andy's gone to watch Bathurst with his Dad and Piper is playing with her cousin. I will clean up the lunch mess and probably rest after that (again - SO frustrating).
School is back tomorrow so I'll make sure Piper's bag doesn't have 2 week old food in it (my bet is it does).
I didn't think I'd be good at the "REST" thing....but I think I'll be fine. These legs will ONLY do so much before they dummy-spit it at me. But it's all good. I'm so happy. I don't have MS. These legs will sort themselves out....I feel well...I had an amazing experience (and I mean the entire year)...I am so grateful to everyone....
I just now have to do THIS BIT (recovery) well as this is as important as everything else. So I have my game face on and will do whatever I'm told to do or told not to do.
I'll continue to blog if something of interest happens or if you have questions but I doubt it'll be daily..."Got up; had breakie; got Piper ready for school; meditated; did exercise; slept; had lunch/watched Ellen; cleaned up after lunch; slept; put stuff in slow cooker; slept; etc"... could get real tired real quick!
If you have questions - inbox me on Facebook and I will do my best to answer anything!
Thanks for reading so far. My photo's have been RAW (and if you know me - you'll know that's been REALLY hard for me) but I wanted to be as honest as I could.
DAY 32 - FLY, FLY ME AWAY
So - I left you all in suspense...were they going to let me on the plane or not?! It was a sleepless night for a couple of us that's for sure (1 in Russia; 1 in Australia that I know of)! I was WRECKED and was requesting info of Anastasia all night and again by 8am in the morning. Was she annoyed? Pissed off? NOT in a heart beat. So loving; so keen to calm me.
Both her and Dr F (as you can imagine by now) were PHENOMENAL. They did the paperwork that was asked of them, even though it was not 'normal'. I should have been their easiest person of the day.... I know there were 4 people having their Chemo and Dr F had 3 STEM CELL TRANSPLANTS that day...on top of all the other procedures that he is ALL OVER.
You may have read on my Facebook page how he calmed me down....
He came in to do normal 'obs' and knew I was S.T.R.E.S.S.E.D....(I'd already cried with Anastasia)...
He took my hand (he always does when taking blood pressure), he stares over his mask quite intensely and says:
"Mary - this is not a problem. You no longer have MS. THIS is your victory. Do not let this travel worry you after you have been so amazing and bright.
WHAT IS THE WORST THAT CAN HAPPEN? You stay with us another day? Is this so bad??
YOU NO LONGER HAVE MS. You will do work to improve your established symptoms and maybe they improve.
Today??!! THIS travel worry - this will NOT be what you remember of this experience."
And how right he was! Now I am home - all I think about is the AMAZING TEAM AND THE AMAZING, AMAZING, AMAZING experience I had.
The care I received was like nothing I can describe, the love, the different experiences (chemo days versus transplant day versus isolation etc)...the other patients, the carers, the POSITIVE attitude of EVERYONE....the process, the 'no fuss/no muss' attitude of everyone..etc. Apart from Crappy Chemo Days (okay - and maybe some of the meals) - ABSOLUTELY EVERYTHING WAS POSITIVE - EVERYTHING!!
If there is ANYONE reading this blog that is wondering "Will I / Won't I" look at Russia....all I can say is PLEASE DO!!! You are not obliged to do or pay anything until you get to Russia and you can remove yourself (if for some insane reason you wanted/needed to) at any time. The waiting list is LONG so at least get yourself on the list - then research like crazy; fundraise etc - BUT GET YOURSELF ON THE LIST!
If I can pay this forward to you...then that's my advice!
I travelled alone, I did 'all my myself' with no Russian language or experience and I was unable to walk anywhere ... and I did it! (Mind you I NEVER felt alone, the language barrier was NEVER a problem, I always felt supported, I met the most fantastic patients and carers) so I feel like MY timing was perfect....I felt at peace, calm, happy.
But I digress - so on Thursday morning, I had my discharge meeting with Dr F which was wonderful - apparently I am SO NORMAL - WHO KNEW??!!
I asked LOTS of questions about precautions and he was onto everything.
(I must add...we were talking about precautions at home etc and I asked about our pets so he proceeded to whip out his phone and show me picture after picture of his ...15kg CAT!! Talk about break the tension. We were in fits. OK - I concede - Russians are funny...)
I gave my Russian letters to those I had written to, along with guardian angel pins, gave Dr F some UGG gloves; Anastasia a beautiful leather band with an Aussie Pearl (thanks to Leskes Jewellers Port Fairy); and cake for everyone! Plus some cash to a few...felt pretty great giving $1000 rubles out willy-nilly...(which incidently is $20)... :)
Alexey (driver) came to collect me just after noon (I still didn't know if I was able to fly) but Dr F and Anastasia said "we love you but ...JUST GO". My Aussie friend had also actually handled things AMAZINGLY WELL so unbeknownst to me, all was well. It was 4 degrees when I left and it snowed that day.
Alexey and I got to the airport and check in was a breeze - cruised through customs and was popped into the Business Lounge....they were so accommodating - no one even asked for a medical record of ANYTHING even though I was in a wheelchair, masked up etc.
The flights were divine (Business Class). My first flight had only 4 of us in Business Class so I even took my mask off for a bit. I ate the food (that was HOT) and enjoyed (probably) too many coffees and Godiva chocolates!!
Dubai was my 'fear' as I had a terrible time on the way over, but again - no drama. They met me at the plane in a wheelchair and again, took me to the Business Lounge. Poor old Dubai. They popped me in the lounge and the lady said DO NOT MOVE and we will come for your at 1.20am. So...I didn't move...1.20...1.25...1.30...1.35am...I starting waving down people that had wheelchairs but none had my boarding pass...(slight panic)...then 'my guy' came and whizzed me through to the gate...LAST ONE TO BOARD. Not happy Jan.
Fortunately/unfortunately the plane was full so there was still a LOT of mucking around before take off so I was well and truly settled before we took off....and again a lovely flight: 8 hours sleep possibly being the highlight!! (Lying flat with a mattress and pillow) OMG! I'm ruined for economy class forever after...
And then just like that I WAS TOUCHING DOWN IN ADELAIDE, AUSTRALIA!!
I started to cry just at the prospect of seeing Piper, Andy and Mum and Dad. People who know me...I fixed up my make up (remember - I have on a mask, hat and glasses)....and the staff helped me out of the plane, through baggage collection and customs in record time....and then I was out!
I saw Dad first and then everyone but of course they had to wheel me away from where everyone else was trying to get out so they wheeled be 'out of the way' before I could hug everyone. It was beautiful. I'm tearing up now just thinking. I had Piper on my lap, we were all crying and laughing...I was home.
We had a night in Adelaide as I had my Haematologist appointment on Friday (great guy seeing me on his day off) so we went to our Hotel in Glenelg and just caught up....it was DONE.
Ok - take a breath...
Both her and Dr F (as you can imagine by now) were PHENOMENAL. They did the paperwork that was asked of them, even though it was not 'normal'. I should have been their easiest person of the day.... I know there were 4 people having their Chemo and Dr F had 3 STEM CELL TRANSPLANTS that day...on top of all the other procedures that he is ALL OVER.
You may have read on my Facebook page how he calmed me down....
He came in to do normal 'obs' and knew I was S.T.R.E.S.S.E.D....(I'd already cried with Anastasia)...
He took my hand (he always does when taking blood pressure), he stares over his mask quite intensely and says:
"Mary - this is not a problem. You no longer have MS. THIS is your victory. Do not let this travel worry you after you have been so amazing and bright.
WHAT IS THE WORST THAT CAN HAPPEN? You stay with us another day? Is this so bad??
YOU NO LONGER HAVE MS. You will do work to improve your established symptoms and maybe they improve.
Today??!! THIS travel worry - this will NOT be what you remember of this experience."
And how right he was! Now I am home - all I think about is the AMAZING TEAM AND THE AMAZING, AMAZING, AMAZING experience I had.
The care I received was like nothing I can describe, the love, the different experiences (chemo days versus transplant day versus isolation etc)...the other patients, the carers, the POSITIVE attitude of EVERYONE....the process, the 'no fuss/no muss' attitude of everyone..etc. Apart from Crappy Chemo Days (okay - and maybe some of the meals) - ABSOLUTELY EVERYTHING WAS POSITIVE - EVERYTHING!!
If there is ANYONE reading this blog that is wondering "Will I / Won't I" look at Russia....all I can say is PLEASE DO!!! You are not obliged to do or pay anything until you get to Russia and you can remove yourself (if for some insane reason you wanted/needed to) at any time. The waiting list is LONG so at least get yourself on the list - then research like crazy; fundraise etc - BUT GET YOURSELF ON THE LIST!
If I can pay this forward to you...then that's my advice!
I travelled alone, I did 'all my myself' with no Russian language or experience and I was unable to walk anywhere ... and I did it! (Mind you I NEVER felt alone, the language barrier was NEVER a problem, I always felt supported, I met the most fantastic patients and carers) so I feel like MY timing was perfect....I felt at peace, calm, happy.
But I digress - so on Thursday morning, I had my discharge meeting with Dr F which was wonderful - apparently I am SO NORMAL - WHO KNEW??!!
I asked LOTS of questions about precautions and he was onto everything.
(I must add...we were talking about precautions at home etc and I asked about our pets so he proceeded to whip out his phone and show me picture after picture of his ...15kg CAT!! Talk about break the tension. We were in fits. OK - I concede - Russians are funny...)
I gave my Russian letters to those I had written to, along with guardian angel pins, gave Dr F some UGG gloves; Anastasia a beautiful leather band with an Aussie Pearl (thanks to Leskes Jewellers Port Fairy); and cake for everyone! Plus some cash to a few...felt pretty great giving $1000 rubles out willy-nilly...(which incidently is $20)... :)
Alexey (driver) came to collect me just after noon (I still didn't know if I was able to fly) but Dr F and Anastasia said "we love you but ...JUST GO". My Aussie friend had also actually handled things AMAZINGLY WELL so unbeknownst to me, all was well. It was 4 degrees when I left and it snowed that day.
Alexey and I got to the airport and check in was a breeze - cruised through customs and was popped into the Business Lounge....they were so accommodating - no one even asked for a medical record of ANYTHING even though I was in a wheelchair, masked up etc.
The flights were divine (Business Class). My first flight had only 4 of us in Business Class so I even took my mask off for a bit. I ate the food (that was HOT) and enjoyed (probably) too many coffees and Godiva chocolates!!
Dubai was my 'fear' as I had a terrible time on the way over, but again - no drama. They met me at the plane in a wheelchair and again, took me to the Business Lounge. Poor old Dubai. They popped me in the lounge and the lady said DO NOT MOVE and we will come for your at 1.20am. So...I didn't move...1.20...1.25...1.30...1.35am...I starting waving down people that had wheelchairs but none had my boarding pass...(slight panic)...then 'my guy' came and whizzed me through to the gate...LAST ONE TO BOARD. Not happy Jan.
Fortunately/unfortunately the plane was full so there was still a LOT of mucking around before take off so I was well and truly settled before we took off....and again a lovely flight: 8 hours sleep possibly being the highlight!! (Lying flat with a mattress and pillow) OMG! I'm ruined for economy class forever after...
And then just like that I WAS TOUCHING DOWN IN ADELAIDE, AUSTRALIA!!
I started to cry just at the prospect of seeing Piper, Andy and Mum and Dad. People who know me...I fixed up my make up (remember - I have on a mask, hat and glasses)....and the staff helped me out of the plane, through baggage collection and customs in record time....and then I was out!
I saw Dad first and then everyone but of course they had to wheel me away from where everyone else was trying to get out so they wheeled be 'out of the way' before I could hug everyone. It was beautiful. I'm tearing up now just thinking. I had Piper on my lap, we were all crying and laughing...I was home.
We had a night in Adelaide as I had my Haematologist appointment on Friday (great guy seeing me on his day off) so we went to our Hotel in Glenelg and just caught up....it was DONE.
Ok - take a breath...
Tuesday, 6 October 2015
DAY 31 - LAST FULL DAY
Well I had hoped to pop around and see lots of people today, say farewells and pack and re-pack.
The pack and re-pack I got down to a fine art (and looking to my right, I'm gunna have another go)...but unfortunately my day was filled with worry.
Through no ones fault, the airline now has a query about whether or not I am healthy enough to fly. They are making all sorts of demands for tests that NO ONE has ever experienced before.
Both Dr F and Anastasia are a little baffled and don't really know what to supply because all their paperwork is very concise in saying that the patient is discharged, cleared to fly, with the only precautions being masks in crowded spaces, gloves and wheelchair assistance if required.
All I wanted was a wheelchair!
But now there is a query about whether I need Oxygen on the flight and at this stage (7pm) it's still not cleared. So 'the approval for my declaration of being fit to travel is still on stand by'.
I am seriously praying that Dr F and Anastasia can sort this in the morning but they are as baffled as it by me so .... shit.
My poor darling friend in Australia has worked round the clock and is trying to sort for me where it must be oh...2.30am. Hopefully she is tucked up in bed and we'll rectify in the morning....my heart breaks for her as much as it does for me!!
I can't believe it. THIS HAS NOT HAPPENED TO ANYONE THAT HAS COME TO RUSSIA BEFORE ....FROM ANYWHERE IN THE WORLD. NO ONE . Why would they pick on me??
Dr F and Anastasia just keep shaking their heads. They say not to worry - they've done this a million times before - their paperwork will suffice.....but trust me ...I'm worried.
I kept it together until about 30 mins ago where I just had a great big blubber. WHY? This has all been SO EASY. Why now? Why?
There is absolutely no one to blame and I'm not about that - and I get the airline is covering their butt...BUT ....I'm SO dirty that my last day has been so marred by such bureaucratic bull dust. And I don't know what to do to help?
I haven't even left my room because I am just at a loss.
Russia - I have loved you (so much)..but fair to say - I just wanna get home now.
The pack and re-pack I got down to a fine art (and looking to my right, I'm gunna have another go)...but unfortunately my day was filled with worry.
Through no ones fault, the airline now has a query about whether or not I am healthy enough to fly. They are making all sorts of demands for tests that NO ONE has ever experienced before.
Both Dr F and Anastasia are a little baffled and don't really know what to supply because all their paperwork is very concise in saying that the patient is discharged, cleared to fly, with the only precautions being masks in crowded spaces, gloves and wheelchair assistance if required.
All I wanted was a wheelchair!
But now there is a query about whether I need Oxygen on the flight and at this stage (7pm) it's still not cleared. So 'the approval for my declaration of being fit to travel is still on stand by'.
I am seriously praying that Dr F and Anastasia can sort this in the morning but they are as baffled as it by me so .... shit.
My poor darling friend in Australia has worked round the clock and is trying to sort for me where it must be oh...2.30am. Hopefully she is tucked up in bed and we'll rectify in the morning....my heart breaks for her as much as it does for me!!
I can't believe it. THIS HAS NOT HAPPENED TO ANYONE THAT HAS COME TO RUSSIA BEFORE ....FROM ANYWHERE IN THE WORLD. NO ONE . Why would they pick on me??
Dr F and Anastasia just keep shaking their heads. They say not to worry - they've done this a million times before - their paperwork will suffice.....but trust me ...I'm worried.
I kept it together until about 30 mins ago where I just had a great big blubber. WHY? This has all been SO EASY. Why now? Why?
There is absolutely no one to blame and I'm not about that - and I get the airline is covering their butt...BUT ....I'm SO dirty that my last day has been so marred by such bureaucratic bull dust. And I don't know what to do to help?
I haven't even left my room because I am just at a loss.
Russia - I have loved you (so much)..but fair to say - I just wanna get home now.
Monday, 5 October 2015
DAY 30 - LOVE
So today's blog takes a turn....I had AMAZING things going round in my head throughout the night - but alas, come morning they have all flown the coup!
I think of LOVE today for many reasons: My time here is almost up ... I've already had to say good byE to 2 of my favourite ladies who won't be back on shift until I've left. I can honestly say I HAVE LOVED being here...at this time ... with these Doctors, Nurses, Patients and Carers. I feel so blessed that my time was NOW. I have felt safe, supported, cared for, NEVER lonely, always informed, always included.
I LOVE that I can say I felt comfortable that God was with me ...and Trust me He HAS been with me. I knew / know he's go this.
I can even honestly say that I barely felt homesick. Oh Sure I missed Piper, Andy and the fam like crazy but ....I knew this was where I needed to be and I felt great for it. I'm even glad I DID chose to travel alone. It was my time for me. Trust me - I have cried but honestly...barely. Big girl pants rock.
So - I have LOVED my time here and whatever happens symptom wise, I have no regrets of my decision to come and have HSCT with the phenomenal Dr Fedordenko and this amazing team. I NO LONGER HAVE MS... what that means for all established symptoms we shall just have to wait and see...but I'm (forever) optimistic!.
My gratitude is off the charts. Sure - to Team Russia, but also to my family, my friends, my community, prayer groups, strangers(!) - all of how helped this to become a reality.
A dear girlfriend said I need to get "public" to get myself out there ... and that is so out of my comfort zone...but I did it and I could never have fathomed the LOVE I received from my community. I met new and amazing people throughout the year (and without question here in Russia too) and that never would have happened had I tried to do softly; softly.
All For little ol' me ! Hands down the most humbling year of my life.
My LOVE for my family continues to bubble over. Piper is my world and my love for her knows no bounds. She is my ....EVERYTHING and I hope she is truly proud of me and this journey...I want to help her grow into the beautiful, strong, funny, caring, empathetic, determined, amazing, resilient, kind, bright, compassionate, fair kid I know she can be. I do hope she looks back with pride because I did so much of this for her....to be a better mum as she truly, truly deserves.
Andy stuck around long after this MS diagnosis and never gave it too much air time. He has been so patient and accepting - considering the active person he fell in love with left the building a long time ago. I cannot understand his continued LOVE for me but I am eternally grateful.
My Mum is my Rock and my Dad is my Inspriation and how that works together so well, I'll never know but their support (amongst their fear) and their LOVE brings tears to my eyes. Mum does the worry; Dad remains Optimistic. It WORKS! NO parent wants to watch their kids suffer like I had. I cannot imagine their angst over the past 13 years. I wish it on no one and yet they were so strong.
My darling sisters, friends, work mates and everyone.... your compassion and LOVE and understanding and acceptance is mind-boggling. Again - it can't be pretty to watch....yet you all let me hang around and never make me feel a hindrance....ever. Even when I really know I am.
To my merry little committee and Mt Gambier Community Events - to other organisations who did things off their own backs (Girl Guildes, Lions, Running Clubs, Exchange Printers, EFM, Footy Clubs, Soccer Clubs, Lorraine Lea, School cupcakes and dances and tins around town), to the bigger events such as the RSL Happy Hour, the Awesome Dragon Boat Regatta on the Goldie, the AMAZING ++++ dinner auction. Words fail me with the thanks, gratitude, love, overwhelming support I feel - both with attending such events and providing goods and services. Seriously seriously floored.
To messages from sporting celebrities - Socceroo Tim Cahill, Anna Meares, Jessica Trengrove and Neal Danaher! WHAT ON EARTH?!
I've said it before and I will continue to say it - I am so BLESSED.
THANK YOU FOR YOUR LOVE...IT IS RETURNED TEN-FOLD.
Quick update:
Today I had Vlad removed from my neck so I am just back to just ME. ME minus MS.
I am alarmed at how weak I am walking but still, Dr F is not concerned. REST: REST: REST. It's a touch frustrating after seeing others leave with a spring in their step, but I know my body just did 10 rounds with Mke Tyson so I'm willing to just watch and see....and this is when the roller coaster beings so I'm aware of that too.
Anyway - to sign off in LOVE.
2 wonderful things today.
1) One of my most darling, special, awe-inspring, radiant, adored friends got married today on the Gold Coast.. She (as to be expected) looked divine and a great portion of my day was spent stalking for photo's of her! There's will be a love that stands the ages.
2) It was announced today that Dr Fedorendo is going to become a Daddy to a baby boy sometimes next year! Such wonderful news and what a lucky little man!
So LOVE is all REALLY all around.
Such joy.
Oh crap... I've eaten an entire bag of Strawberries and Creams doing this. That's not good.
Tomorrow - pack up. Visit chicks on level 2.
Wednesday - exit meeting. Tears. Fly out!
I think of LOVE today for many reasons: My time here is almost up ... I've already had to say good byE to 2 of my favourite ladies who won't be back on shift until I've left. I can honestly say I HAVE LOVED being here...at this time ... with these Doctors, Nurses, Patients and Carers. I feel so blessed that my time was NOW. I have felt safe, supported, cared for, NEVER lonely, always informed, always included.
I LOVE that I can say I felt comfortable that God was with me ...and Trust me He HAS been with me. I knew / know he's go this.
I can even honestly say that I barely felt homesick. Oh Sure I missed Piper, Andy and the fam like crazy but ....I knew this was where I needed to be and I felt great for it. I'm even glad I DID chose to travel alone. It was my time for me. Trust me - I have cried but honestly...barely. Big girl pants rock.
So - I have LOVED my time here and whatever happens symptom wise, I have no regrets of my decision to come and have HSCT with the phenomenal Dr Fedordenko and this amazing team. I NO LONGER HAVE MS... what that means for all established symptoms we shall just have to wait and see...but I'm (forever) optimistic!.
My gratitude is off the charts. Sure - to Team Russia, but also to my family, my friends, my community, prayer groups, strangers(!) - all of how helped this to become a reality.
A dear girlfriend said I need to get "public" to get myself out there ... and that is so out of my comfort zone...but I did it and I could never have fathomed the LOVE I received from my community. I met new and amazing people throughout the year (and without question here in Russia too) and that never would have happened had I tried to do softly; softly.
All For little ol' me ! Hands down the most humbling year of my life.
My LOVE for my family continues to bubble over. Piper is my world and my love for her knows no bounds. She is my ....EVERYTHING and I hope she is truly proud of me and this journey...I want to help her grow into the beautiful, strong, funny, caring, empathetic, determined, amazing, resilient, kind, bright, compassionate, fair kid I know she can be. I do hope she looks back with pride because I did so much of this for her....to be a better mum as she truly, truly deserves.
Andy stuck around long after this MS diagnosis and never gave it too much air time. He has been so patient and accepting - considering the active person he fell in love with left the building a long time ago. I cannot understand his continued LOVE for me but I am eternally grateful.
My Mum is my Rock and my Dad is my Inspriation and how that works together so well, I'll never know but their support (amongst their fear) and their LOVE brings tears to my eyes. Mum does the worry; Dad remains Optimistic. It WORKS! NO parent wants to watch their kids suffer like I had. I cannot imagine their angst over the past 13 years. I wish it on no one and yet they were so strong.
My darling sisters, friends, work mates and everyone.... your compassion and LOVE and understanding and acceptance is mind-boggling. Again - it can't be pretty to watch....yet you all let me hang around and never make me feel a hindrance....ever. Even when I really know I am.
To my merry little committee and Mt Gambier Community Events - to other organisations who did things off their own backs (Girl Guildes, Lions, Running Clubs, Exchange Printers, EFM, Footy Clubs, Soccer Clubs, Lorraine Lea, School cupcakes and dances and tins around town), to the bigger events such as the RSL Happy Hour, the Awesome Dragon Boat Regatta on the Goldie, the AMAZING ++++ dinner auction. Words fail me with the thanks, gratitude, love, overwhelming support I feel - both with attending such events and providing goods and services. Seriously seriously floored.
To messages from sporting celebrities - Socceroo Tim Cahill, Anna Meares, Jessica Trengrove and Neal Danaher! WHAT ON EARTH?!
I've said it before and I will continue to say it - I am so BLESSED.
THANK YOU FOR YOUR LOVE...IT IS RETURNED TEN-FOLD.
Quick update:
Today I had Vlad removed from my neck so I am just back to just ME. ME minus MS.
I am alarmed at how weak I am walking but still, Dr F is not concerned. REST: REST: REST. It's a touch frustrating after seeing others leave with a spring in their step, but I know my body just did 10 rounds with Mke Tyson so I'm willing to just watch and see....and this is when the roller coaster beings so I'm aware of that too.
Anyway - to sign off in LOVE.
2 wonderful things today.
1) One of my most darling, special, awe-inspring, radiant, adored friends got married today on the Gold Coast.. She (as to be expected) looked divine and a great portion of my day was spent stalking for photo's of her! There's will be a love that stands the ages.
2) It was announced today that Dr Fedorendo is going to become a Daddy to a baby boy sometimes next year! Such wonderful news and what a lucky little man!
So LOVE is all REALLY all around.
Such joy.
Oh crap... I've eaten an entire bag of Strawberries and Creams doing this. That's not good.
Tomorrow - pack up. Visit chicks on level 2.
Wednesday - exit meeting. Tears. Fly out!
Sunday, 4 October 2015
DAY 29 - RITUXIMAB INFUSION
So it turns out that fear, insecurity, nastiness, aggression are NOT immune to my sterilisation bubble and have been busily building to this morning when I did something I am deeply ashamed of .
I took out my fear and frustration and my PERCEIVED total lack of care of my request out on someone at home.
I take this opportunity to again apologise.
Again - if you can't say something nice - Don't say nothing at all. Terrible guilt ridden morning - I DON'T recommend it when you've been on such a high for so long.
Anyway, today marked the day of my 5-6 hour Rituximab infusion. This is the FINAL STEP in the process!! Tomorrow I will have Vlad removed from my neck and then I get 1.5 days recovery before I board the plan back HOME!!!!!!!!
Rituximab according to Wikipedia is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders
What is does for us, I am lead to understand, is pumps up our immunity and white blood counts, ready for the trip home...but I could be so far embarrassingly wrong!
Anyway - it's in their fighting the good fight!
So today was just spent doing that. Again...it SHATTERED me. I am like a zombie and my legs are STILL so bad...so so bad. AGAIN - no cause for alarm and perfectly normal for most . So I go with that.
I realise now the road to recovery at home may be a little harder than I had blissfully had in my head ...but then I've had brilliant days here where I've been so productive so I'm not going to stew on that either. Patients that went home only last week are feeling amazing and better than in years so it is their positivity I am drawn to.
The article I posted yesterday said - get up - get dressed- do SOMETHING ...and that's what I'm all about so I think in going to be fine. With all Andy, Piper, Mum, Dad, Sisters, Friends have done to prepare my house....I just have to NOT feel guilt on the days when I need to rest. THEY will not be the ones demanding it of me ...it will be ME fighting my own demons there!
Anyway - as I mentioned - I'm shattered (again!) but I am ecstatic too!
I AM DONE!
I AM RID OF MS.
I HAVE A CHANCE AT A WHOLE NEW LIFE.
I AM FREE.
TEARS OF JOY ARE ROLLING DOWN MY CHEEKS.
We laugh here because the last line on the procedure chart is "hospital has a laundry room. Inform staff if you need clothing washed"....so THAT'S where I'm up to on my sheet! WASHING!
My thanks to the PHENOMENAL Dr Fedorenko, Anastasia and their team cannot ever be expressed eloquently enough here. They are just the most loving , holistic, giving, caring, funny, beautiful, dedicated, aware, switched on team. But enough - my gratitude is through the roof and around the world 10 times.
TOMORROW I will write about LOVE. Love of my time in Russia, love of my family, my friends, my journey to get here, but also the love of one of my most amazing, inspiring, divine, beautiful giving friends who ties the knot tomorrow and this fills my heart (to overflowing) with such love. No one deserves it more.
So with forgiveness (I hope), love, gratitude, amazement, joy and growing strength (again I hope) I say goodnight.
Oh ..and numbers for those:
Haemoglobin: 104 (normal 120-160) (this could be pesky periods fault too - I dunno)
Leukocytes 6.85 (normal 4-10)
Platelets 292 (normal 150-400)
Just need those little Haemoglobins to jump and I'll be "normal" as they come. Baaa HHhaAaaarrrRRrrrrRr! :)
I took out my fear and frustration and my PERCEIVED total lack of care of my request out on someone at home.
I take this opportunity to again apologise.
Again - if you can't say something nice - Don't say nothing at all. Terrible guilt ridden morning - I DON'T recommend it when you've been on such a high for so long.
Anyway, today marked the day of my 5-6 hour Rituximab infusion. This is the FINAL STEP in the process!! Tomorrow I will have Vlad removed from my neck and then I get 1.5 days recovery before I board the plan back HOME!!!!!!!!
Rituximab according to Wikipedia is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders
What is does for us, I am lead to understand, is pumps up our immunity and white blood counts, ready for the trip home...but I could be so far embarrassingly wrong!
Anyway - it's in their fighting the good fight!
So today was just spent doing that. Again...it SHATTERED me. I am like a zombie and my legs are STILL so bad...so so bad. AGAIN - no cause for alarm and perfectly normal for most . So I go with that.
I realise now the road to recovery at home may be a little harder than I had blissfully had in my head ...but then I've had brilliant days here where I've been so productive so I'm not going to stew on that either. Patients that went home only last week are feeling amazing and better than in years so it is their positivity I am drawn to.
The article I posted yesterday said - get up - get dressed- do SOMETHING ...and that's what I'm all about so I think in going to be fine. With all Andy, Piper, Mum, Dad, Sisters, Friends have done to prepare my house....I just have to NOT feel guilt on the days when I need to rest. THEY will not be the ones demanding it of me ...it will be ME fighting my own demons there!
Anyway - as I mentioned - I'm shattered (again!) but I am ecstatic too!
I AM DONE!
I AM RID OF MS.
I HAVE A CHANCE AT A WHOLE NEW LIFE.
I AM FREE.
TEARS OF JOY ARE ROLLING DOWN MY CHEEKS.
We laugh here because the last line on the procedure chart is "hospital has a laundry room. Inform staff if you need clothing washed"....so THAT'S where I'm up to on my sheet! WASHING!
My thanks to the PHENOMENAL Dr Fedorenko, Anastasia and their team cannot ever be expressed eloquently enough here. They are just the most loving , holistic, giving, caring, funny, beautiful, dedicated, aware, switched on team. But enough - my gratitude is through the roof and around the world 10 times.
TOMORROW I will write about LOVE. Love of my time in Russia, love of my family, my friends, my journey to get here, but also the love of one of my most amazing, inspiring, divine, beautiful giving friends who ties the knot tomorrow and this fills my heart (to overflowing) with such love. No one deserves it more.
So with forgiveness (I hope), love, gratitude, amazement, joy and growing strength (again I hope) I say goodnight.
Oh ..and numbers for those:
Haemoglobin: 104 (normal 120-160) (this could be pesky periods fault too - I dunno)
Leukocytes 6.85 (normal 4-10)
Platelets 292 (normal 150-400)
Just need those little Haemoglobins to jump and I'll be "normal" as they come. Baaa HHhaAaaarrrRRrrrrRr! :)
Saturday, 3 October 2015
AN APOLOGY
So this is not the blog of the day but I feel compelled to get this written.
I have constantly rejoiced in how God is in this with me and how safe I feel here and happy and secure. I'd say he'd be a little disappointed in me today....so asking forgiveness is on the schedule !
Well, today I was incredibly unkind to someone from home - all stemmed from my own insecurities, fear of non-immunity, concern that rules weren't being taken seriously, etc.
I AM a positive person...I assure you - but over the last few days I have been stripped to as RAW and vulnerable as I think I could get. "Looks" aside (cos they make me cringe too much) .... MY body is up for the slaughter and it scares me. As you know - I've handled things pretty great (if I do say so myself) and I have loved my time in Russia like I never would have imagined possible....but then - Here in my beautiful Russia - I'm as safe as houses! I'm in a sterile bubble where no one lets you take risks (remember the cuticle debarkle),
But now - my body is now back to it's infancy....so weak, so little, so vunerable...so scary.
Anyway - not a big blog but a personal apology to someone(s) I upset today. I am so sorry and please understand it comes from a place of fear and misunderstanding.
In the wise, wise words of Thumper Rabbit in Bambi. "If you can't say something nice....don't say nothin' at all".
Sorry.
I have constantly rejoiced in how God is in this with me and how safe I feel here and happy and secure. I'd say he'd be a little disappointed in me today....so asking forgiveness is on the schedule !
Well, today I was incredibly unkind to someone from home - all stemmed from my own insecurities, fear of non-immunity, concern that rules weren't being taken seriously, etc.
I AM a positive person...I assure you - but over the last few days I have been stripped to as RAW and vulnerable as I think I could get. "Looks" aside (cos they make me cringe too much) .... MY body is up for the slaughter and it scares me. As you know - I've handled things pretty great (if I do say so myself) and I have loved my time in Russia like I never would have imagined possible....but then - Here in my beautiful Russia - I'm as safe as houses! I'm in a sterile bubble where no one lets you take risks (remember the cuticle debarkle),
But now - my body is now back to it's infancy....so weak, so little, so vunerable...so scary.
Anyway - not a big blog but a personal apology to someone(s) I upset today. I am so sorry and please understand it comes from a place of fear and misunderstanding.
In the wise, wise words of Thumper Rabbit in Bambi. "If you can't say something nice....don't say nothin' at all".
Sorry.
DAY 28 - IN A HAZE
Sorry for those involved in early morning banter over Messenger! I was sharing pictures of my rapidly deteriorating hair line with those that I thought MIGHT be up so I apologise if I got some wrong! Anyway - it was amusing for me at 2am in the morning....
Usual morning routine. 6AM INFUSION and bloods. Tried to get back to sleep and dozed until 8.30 breakie. Dr F came in (yes - it's Saturday) and happily went through results. He's stoked.
Improvement from yesterday and very happy:
Haemoglobin 106 (so close to normal)!! (120-160)
Leukocytes 8.12 (excellent)
Platelets 345 (excellent).
So that was all fabulous but ....I feel ABSOLUTEY SHATTERED. My legs are so shaky and I am incredibly weak. I need to hang onto to everything to walk about (lucky I live in a 3m x 2x box)! He explained that this could be due to the return of the perky period but also probably due to the reduction of steroids can cause this. Also just the fact that I have been immobile for virtually 30 days. He said it will recover and not to worry. This is common Mary. It is fine. Just do not try to much and fall. RELAX.
I am reminded of my fellow PPMSer who at this stage was striding (not really but you know what I mean) down the hallways - he was friggin' awesome +++....frustrating for me but I do understand it's each to his own and most of us girls have felt more tired than before.
So (for once) I listened to my body. I lazed on the bed for almost the entire day. I popped into the lounge at one stage but no one was around so I crawled back to bed for a nap....very 'un-Mary'....
I can't get over it ...just totally shattered. Don 't get me wrong - I don't feel sick or unwell or anything like that but INSANELY T.I.R.E.D. It's now just gone 7.30pm (and for those that now me - this is ridiculous) but I'm going to bed.
I'm spewing because I really want to enjoy every last morsel of time here but today was just not that day. Do the right thing tonight and hopefully onwards and upwards tomorrow me hopes! Only 3.5 days to go!!!
PS - Mind you - I did manage to organise a cake for the staff; confirmed a visit the ATM, confirmed flights, confirmed driver to airport, asked Anastasia to print off a heap of things, washed all my 'smalls' ... so I am STILL ME! :)
But for now - Night Night.
Actually tomorrow might be different again - I think I am having my 5 hour infusion of Rituximab...or maybe that's Monday...and then Vlad leaves my body forever and ...that's it?! So well see what tomorrow turns into!
PS - A super heart felt enormous thank you to those that have read my DAY 26: REMINDER NO IMMUNE SYSTEM UPDATED blog. That's the one that is continually playing on my mind and stressing me SO MUCH so Spaseesba (thank you) for those that have taken the time to read and take on board. Also thank you to my Mum who took Piper in for a check up at the Doc's - got her some supplements - all ready for us to go; And to Andy and my family who all had their whooping cough boosters for me and did all those little extra things for my peace of mind. And Dad for his (no doubt) amazing sign. I love you all so much. Thank you for 'getting it'.
Love you Andy, Pipes, and my Griswald family xxxxsxxxx
Usual morning routine. 6AM INFUSION and bloods. Tried to get back to sleep and dozed until 8.30 breakie. Dr F came in (yes - it's Saturday) and happily went through results. He's stoked.
Improvement from yesterday and very happy:
Haemoglobin 106 (so close to normal)!! (120-160)
Leukocytes 8.12 (excellent)
Platelets 345 (excellent).
So that was all fabulous but ....I feel ABSOLUTEY SHATTERED. My legs are so shaky and I am incredibly weak. I need to hang onto to everything to walk about (lucky I live in a 3m x 2x box)! He explained that this could be due to the return of the perky period but also probably due to the reduction of steroids can cause this. Also just the fact that I have been immobile for virtually 30 days. He said it will recover and not to worry. This is common Mary. It is fine. Just do not try to much and fall. RELAX.
I am reminded of my fellow PPMSer who at this stage was striding (not really but you know what I mean) down the hallways - he was friggin' awesome +++....frustrating for me but I do understand it's each to his own and most of us girls have felt more tired than before.
So (for once) I listened to my body. I lazed on the bed for almost the entire day. I popped into the lounge at one stage but no one was around so I crawled back to bed for a nap....very 'un-Mary'....
I can't get over it ...just totally shattered. Don 't get me wrong - I don't feel sick or unwell or anything like that but INSANELY T.I.R.E.D. It's now just gone 7.30pm (and for those that now me - this is ridiculous) but I'm going to bed.
I'm spewing because I really want to enjoy every last morsel of time here but today was just not that day. Do the right thing tonight and hopefully onwards and upwards tomorrow me hopes! Only 3.5 days to go!!!
PS - Mind you - I did manage to organise a cake for the staff; confirmed a visit the ATM, confirmed flights, confirmed driver to airport, asked Anastasia to print off a heap of things, washed all my 'smalls' ... so I am STILL ME! :)
But for now - Night Night.
Actually tomorrow might be different again - I think I am having my 5 hour infusion of Rituximab...or maybe that's Monday...and then Vlad leaves my body forever and ...that's it?! So well see what tomorrow turns into!
PS - A super heart felt enormous thank you to those that have read my DAY 26: REMINDER NO IMMUNE SYSTEM UPDATED blog. That's the one that is continually playing on my mind and stressing me SO MUCH so Spaseesba (thank you) for those that have taken the time to read and take on board. Also thank you to my Mum who took Piper in for a check up at the Doc's - got her some supplements - all ready for us to go; And to Andy and my family who all had their whooping cough boosters for me and did all those little extra things for my peace of mind. And Dad for his (no doubt) amazing sign. I love you all so much. Thank you for 'getting it'.
Love you Andy, Pipes, and my Griswald family xxxxsxxxx
Friday, 2 October 2015
DAY 27 - TOPSY TURVY
Well, after my rather emotional day yesterday...I decided my time is too short here and there are new people to meet..and I'm no longer in isolation so I need to enjoy my last few days - regardless of stresses from elsewhere! So, with my own suitcases now returned, I rummaed around for my 'big girl panties' and decided to get on with day.
I was up bright and early for the 7am (I think it's getting earlier) infusion, I had breakie; facebooked, packed, read, got dressed into REAL clothes and even attempted make up (OMG what a joke).
Dr F came to see me mid-morning, as he always does, but was asking if I was okay - was I homesick....stressed? I said I NO NO NO! I AM SO VERY HAPPY HERE but was very frustrated yesterday but just with news from home - but I'm all good. He just said that my numbers dropped slightly which surprised him. All well within range so nothing to worry about
Hemoglobin Thurs: 102; Fri 101 - still not up to range (120-160)
Leukocytes Thurs: 9.34; Fri 6.9 (big drop) - still in 4-10 range
Platelets Thurs: 247; Fri 284 (fine) - still in range (150-400)
He gave me a hug and said it's no problem. We have you. It's all good and fine. Be happy again.
So I was.
To add insult to injury - later in the day I got my period (for the 3rd time since I got here - sorry lads) so I guess that'll change some blood numbers tomorrow too. DAMN STRESS. The whole period thing is not uncommon so I'm just rolling with it. Hopefully will be gone by tomorrow we've both decided (as we do).
So after his visit I went and sat out in the lounge and read etc. Then a massive group of newbies came up...with PIZZA! An Aussie girlfriend I have met before is here now along with a beautiful contingent! Much like my start - some have started chemo today, some just finished testing, some about to start Steroids...a couple with their Vlad's in...etc!
It was SSOOOOOOOO great to chat and share time with this group. Yet another outstanding group of POSITIVE, GRATEFUL, HUMBLE beautiful people. I am blessed beyond measure.
They bought me a supply of goodies (which there is no way I will get through before I leave NEXT WEDNESDAY!!!) But OMG - Kit Kats, M&M's Lays Chips, Milka chocolate ... HEAVEN. So thank you gang! I'll leave (anything) I have left with Kim!! Unless I can cram it in my luggage of course!!!! :)
After a while, the gang went shopping at the markets so I headed back to my room and rung mum and dad, Andy, Pipes etc. Read my book, dozed, packed my bag again....emailed....a nice afternoon and I'm far calmer than yesterday.
So today here it is Friday night.....and I just realised I leave on WEDNESDAY at noon.....4.5 days! How on earth did that happen!!!
I am determined to fully enjoy every last morsel of this experience and these amazing amazing, amazing people for every last second I have . Crap - I may even need to get this ugly pimple head in some photo's. UGH.
My legs are currently 10 times weaker than when I walked in here WITH MS (SO BAD) but I might see if someone can wheel me outside tomorrow and I also want to get to the ATM in the next building.
I don't know if you saw but I shared an article on the FB page about this and the absolute hammering I have put my body through. Between God, Dr F and team Russia I have the most calm, strong, indescribable faith that this has stopped my MS dead in in tracks and I WILL see improvements in time. I have no question in my mind in that.
Okay - gotta go - there's a Kit Kat calling my name next to hot cuppa tea!
Oh - something about footy....something, something ....Go SUNS! :) XXX
I was up bright and early for the 7am (I think it's getting earlier) infusion, I had breakie; facebooked, packed, read, got dressed into REAL clothes and even attempted make up (OMG what a joke).
Dr F came to see me mid-morning, as he always does, but was asking if I was okay - was I homesick....stressed? I said I NO NO NO! I AM SO VERY HAPPY HERE but was very frustrated yesterday but just with news from home - but I'm all good. He just said that my numbers dropped slightly which surprised him. All well within range so nothing to worry about
Hemoglobin Thurs: 102; Fri 101 - still not up to range (120-160)
Leukocytes Thurs: 9.34; Fri 6.9 (big drop) - still in 4-10 range
Platelets Thurs: 247; Fri 284 (fine) - still in range (150-400)
He gave me a hug and said it's no problem. We have you. It's all good and fine. Be happy again.
So I was.
To add insult to injury - later in the day I got my period (for the 3rd time since I got here - sorry lads) so I guess that'll change some blood numbers tomorrow too. DAMN STRESS. The whole period thing is not uncommon so I'm just rolling with it. Hopefully will be gone by tomorrow we've both decided (as we do).
So after his visit I went and sat out in the lounge and read etc. Then a massive group of newbies came up...with PIZZA! An Aussie girlfriend I have met before is here now along with a beautiful contingent! Much like my start - some have started chemo today, some just finished testing, some about to start Steroids...a couple with their Vlad's in...etc!
It was SSOOOOOOOO great to chat and share time with this group. Yet another outstanding group of POSITIVE, GRATEFUL, HUMBLE beautiful people. I am blessed beyond measure.
They bought me a supply of goodies (which there is no way I will get through before I leave NEXT WEDNESDAY!!!) But OMG - Kit Kats, M&M's Lays Chips, Milka chocolate ... HEAVEN. So thank you gang! I'll leave (anything) I have left with Kim!! Unless I can cram it in my luggage of course!!!! :)
After a while, the gang went shopping at the markets so I headed back to my room and rung mum and dad, Andy, Pipes etc. Read my book, dozed, packed my bag again....emailed....a nice afternoon and I'm far calmer than yesterday.
So today here it is Friday night.....and I just realised I leave on WEDNESDAY at noon.....4.5 days! How on earth did that happen!!!
I am determined to fully enjoy every last morsel of this experience and these amazing amazing, amazing people for every last second I have . Crap - I may even need to get this ugly pimple head in some photo's. UGH.
My legs are currently 10 times weaker than when I walked in here WITH MS (SO BAD) but I might see if someone can wheel me outside tomorrow and I also want to get to the ATM in the next building.
I don't know if you saw but I shared an article on the FB page about this and the absolute hammering I have put my body through. Between God, Dr F and team Russia I have the most calm, strong, indescribable faith that this has stopped my MS dead in in tracks and I WILL see improvements in time. I have no question in my mind in that.
Okay - gotta go - there's a Kit Kat calling my name next to hot cuppa tea!
Oh - something about footy....something, something ....Go SUNS! :) XXX
Thursday, 1 October 2015
DAY 26 - REMINDER - NO IMMUNE SYSTEM.
For what had promised to be a beautiful day mingling with my fellow patients and the like - today has been a (my first) downer. not bad for 26 days in.
I bring you all back to MY (NON-EXISTENT) IMMUNE SYSTEM
I thought I had explained pretty well the rules and expectations for my return.
Virus and bacteria hang around all the time...and if YOU ARE immunised, you'll never know - but if they find me ...different story. I'm open slather.
All of you have (I suspect) strong immune systems and/or have been vaccinated to protect you from all sorts of things. BUT this doesn't mean that you can't be a carrier and thus, putting a little fledging like me, at risk.
I have friends and family who have been (or are currently) travelling to remote areas around Australia and 3rd world places in the holidays and, to be honest, this is SINGLE MOST THING THAT scares the bejesus out of me.
Sure - also kids get sick and Piper will be around kids....and we all have pets - who are FOR THE MOST PART SAFE IN OUR YARDS as long as the yard is kept poop free (Andy) and they avoid contracting things from other social, (feral?) animals, dirt, kids.
SO A REMINDER. IF YOU KNOW ME AND THINK YOU WANT TO SEE ME (AFTER THIS RANT THAT IS)!
THIS ALL DEFINITELY APPLIES TO YOU
1) FROM THE SECOND YOU READ THIS - ABSOLUTELY NO KISSING ANDY, PIPER (OR ME). Sorry de Nys reunioners. Little sneaky kisses aren't cute - they dangerous.
2) I'M CALLING IT. NO VISITORS FOR FIRST 2-3 WEEKS. My Haematologist can then make the call from there. This is possibly quite OCD but hey - I am not jeopardising this! Of course, Andy and Piper will still be living at home...and maybe mum and dad fleetingly but that's it.
3) No flowers. No dust/pollen etc allowed in house...whimper. Chocolate and coffee and fine to drop off at the door though.
4) TO STREAMLINE THIS ONE - NO ANIMALS TO VISIT WHATSOEVER AND BASIL CANNOT GO TO PLAY AT OTHER DOG'S HOUSES (OR THE DOG PARK SORRY BAS)!
5) NO HELP NEEDED WITH THE HOUSE. I'm sure in time, Mum and my sisters will lend a hand at times - but no chemicals can be used in house and I have a great cleaning system (Norwex). Food is going to be a learning curb for us all. Although I don't think we'd turn away a good lasagne, roast or casserole! (coming into summer - sheesh)! Again, needs to be something I can microwave to kill off any bacteria.
ONCE I CAN HAVE VISITORS (HOPEFULLY SOONER RATHR THAN LATER) - I WILL LET YOU KNOW.
1) ABSOLUTELY STILL NO KISSING PIPER, ANDY OR ME. Little sneaky kisses aren't cute...they're dangerous.
2) If you have been round sick people or have a sniffle...PLEASE DO NOT VISIT.
3) Been around sick kids or someone with man flu? Yours or others - PLEASE DO NOT VISIT.
4) If you have been around communities that carry sickness (3rd world; hospitals; remote communities and the like), even if you feel fit as a Malley Bull, please visit another time - because YOUR immune system is strong while mine is in it's infancy. You could be carrying something that is critical for me - but harmless to you.
5) USE HAND SANITISER ALL THE TIME ...as you enter, after the loo, using the iPad, etc! Once I allow visitors I may even hook you up in a mask.
6) NO SHOES IN THE HOSUE ..for Andy's sake as much as mine! We have a lot of floor space to keep clean!
7) STILL A BLANKLET RULE - "NO" TO ALL ANIMALS.
8) I can't eat fresh fruit or veg (salad) - can you believe it - and everything needs to be microwaved to kill the bacteria.
9) Trust me! I am NOT trying to keep you away but I am quite nervous ...NO - NOW I AM ABSOLUTELY BLOODY PETRIFIED about the 'no-immune' system especially in the early days.
SO AGAIN - IF YOU KNOW ME AT ALL - THESE RULES APPLY TO YOU.
PLEASE USE COMMON SENSE AND RESPECT MY WISHES - EVEN IF YOU THINK THEY'RE OVER THE TOP. MY LIFE - NOT YOURS.
I've heard of several patients that have ended up in critical condition on their return, just because they thought doing 1 little thing would be okay. I can think of 2 that ended up in hospital for quite a prolonged time after only 1 week home.
I'm SOOOOO nervous about the flight (although I'm told business class is lush) - I'm nervous about eating on the plane - I'm nervous about animals and sick kids from school - I'm INSANELY nervous about lots of my friends and family who have been travelling in Central Australia, Bali, Thailand.
I just want to hug and kiss my family when I get home and I don't know how I'm not going to do that when I see Pipes, Andy, Mum and Dad....but we all know the rules....
Thank you in advance.
Anyone that knows me, please feel free to ask me questions.
SORRY FOR THE SOAP BOX. I have spent the ENTIRE DAY in tears wondering why people aren't respecting my wishes and worrying about this. My first tears in 26 days and this was supposed to be a joyous day of release for me.
Please don't jeopordise this for me and my family.
As you may have seen, I was nervously picking just my cuticles and the nurses jumped on me and put antiseptic on straight away to avoid bacteria getting in and causing infection. Things are real serious real quick....but just for a time I am sure. See! Even my pretty nails got hammered! :( How RAW do they have to make me!
OCD MARY SIGNING OUT FOR ANOTHER SLEEPLESS NIGHT ME THINKS.
I bring you all back to MY (NON-EXISTENT) IMMUNE SYSTEM
I thought I had explained pretty well the rules and expectations for my return.
Virus and bacteria hang around all the time...and if YOU ARE immunised, you'll never know - but if they find me ...different story. I'm open slather.
All of you have (I suspect) strong immune systems and/or have been vaccinated to protect you from all sorts of things. BUT this doesn't mean that you can't be a carrier and thus, putting a little fledging like me, at risk.
I have friends and family who have been (or are currently) travelling to remote areas around Australia and 3rd world places in the holidays and, to be honest, this is SINGLE MOST THING THAT scares the bejesus out of me.
Sure - also kids get sick and Piper will be around kids....and we all have pets - who are FOR THE MOST PART SAFE IN OUR YARDS as long as the yard is kept poop free (Andy) and they avoid contracting things from other social, (feral?) animals, dirt, kids.
SO A REMINDER. IF YOU KNOW ME AND THINK YOU WANT TO SEE ME (AFTER THIS RANT THAT IS)!
THIS ALL DEFINITELY APPLIES TO YOU
1) FROM THE SECOND YOU READ THIS - ABSOLUTELY NO KISSING ANDY, PIPER (OR ME). Sorry de Nys reunioners. Little sneaky kisses aren't cute - they dangerous.
2) I'M CALLING IT. NO VISITORS FOR FIRST 2-3 WEEKS. My Haematologist can then make the call from there. This is possibly quite OCD but hey - I am not jeopardising this! Of course, Andy and Piper will still be living at home...and maybe mum and dad fleetingly but that's it.
3) No flowers. No dust/pollen etc allowed in house...whimper. Chocolate and coffee and fine to drop off at the door though.
4) TO STREAMLINE THIS ONE - NO ANIMALS TO VISIT WHATSOEVER AND BASIL CANNOT GO TO PLAY AT OTHER DOG'S HOUSES (OR THE DOG PARK SORRY BAS)!
5) NO HELP NEEDED WITH THE HOUSE. I'm sure in time, Mum and my sisters will lend a hand at times - but no chemicals can be used in house and I have a great cleaning system (Norwex). Food is going to be a learning curb for us all. Although I don't think we'd turn away a good lasagne, roast or casserole! (coming into summer - sheesh)! Again, needs to be something I can microwave to kill off any bacteria.
ONCE I CAN HAVE VISITORS (HOPEFULLY SOONER RATHR THAN LATER) - I WILL LET YOU KNOW.
1) ABSOLUTELY STILL NO KISSING PIPER, ANDY OR ME. Little sneaky kisses aren't cute...they're dangerous.
2) If you have been round sick people or have a sniffle...PLEASE DO NOT VISIT.
3) Been around sick kids or someone with man flu? Yours or others - PLEASE DO NOT VISIT.
4) If you have been around communities that carry sickness (3rd world; hospitals; remote communities and the like), even if you feel fit as a Malley Bull, please visit another time - because YOUR immune system is strong while mine is in it's infancy. You could be carrying something that is critical for me - but harmless to you.
5) USE HAND SANITISER ALL THE TIME ...as you enter, after the loo, using the iPad, etc! Once I allow visitors I may even hook you up in a mask.
6) NO SHOES IN THE HOSUE ..for Andy's sake as much as mine! We have a lot of floor space to keep clean!
7) STILL A BLANKLET RULE - "NO" TO ALL ANIMALS.
8) I can't eat fresh fruit or veg (salad) - can you believe it - and everything needs to be microwaved to kill the bacteria.
9) Trust me! I am NOT trying to keep you away but I am quite nervous ...NO - NOW I AM ABSOLUTELY BLOODY PETRIFIED about the 'no-immune' system especially in the early days.
SO AGAIN - IF YOU KNOW ME AT ALL - THESE RULES APPLY TO YOU.
PLEASE USE COMMON SENSE AND RESPECT MY WISHES - EVEN IF YOU THINK THEY'RE OVER THE TOP. MY LIFE - NOT YOURS.
I've heard of several patients that have ended up in critical condition on their return, just because they thought doing 1 little thing would be okay. I can think of 2 that ended up in hospital for quite a prolonged time after only 1 week home.
I'm SOOOOO nervous about the flight (although I'm told business class is lush) - I'm nervous about eating on the plane - I'm nervous about animals and sick kids from school - I'm INSANELY nervous about lots of my friends and family who have been travelling in Central Australia, Bali, Thailand.
I just want to hug and kiss my family when I get home and I don't know how I'm not going to do that when I see Pipes, Andy, Mum and Dad....but we all know the rules....
Thank you in advance.
Anyone that knows me, please feel free to ask me questions.
SORRY FOR THE SOAP BOX. I have spent the ENTIRE DAY in tears wondering why people aren't respecting my wishes and worrying about this. My first tears in 26 days and this was supposed to be a joyous day of release for me.
Please don't jeopordise this for me and my family.
As you may have seen, I was nervously picking just my cuticles and the nurses jumped on me and put antiseptic on straight away to avoid bacteria getting in and causing infection. Things are real serious real quick....but just for a time I am sure. See! Even my pretty nails got hammered! :( How RAW do they have to make me!
OCD MARY SIGNING OUT FOR ANOTHER SLEEPLESS NIGHT ME THINKS.
Wednesday, 30 September 2015
DAY 25 - DOOR OPEN!
To save you all a bit of time - the beginning of this is EXACTLY what I wrote on my Facebook page!
Dr F BOUNCED in this morning and went STRAIGHT to figures! (We share this joy thing). Numbers written straight away show engraftment has taken place! New Stemmies are off to work on a new immune system - little sweethearts!!!
Haemoglobin (normal is 120-160): Mary is 103...nearly.
Platelets (normal is 150-400): Mary is 220 - NORMAL!
Leukocytes (normal is 4-10): Mary is 3.8 (compared to 0.85 yesterday)!!
The door has been open!!! I am allowed in a very small, controlled environment, with all of us in masks, etc for the afternoon!
No more Vodka baths, normal toothpaste and soap etc! Yabba-Dabba-Do !!
Naturally my immune system still shot to pieces BUT...this engraftment has taken a giant leap in the right direction!
I was so unbelievably grateful... I started crying!
He was so happy for my joy!
Now if only my legs would work....they are so so shaky! 10 times worse with MS. No one seems surprised.
And now - I'd better find a cap or scarf post haste!
Yes - even my clothes are retuned today!!!
I still have a good solid week of recovery here and then I'm home !!
I feel blessed beyond compare, so grateful, strengthened, my faith is off the rictor scale, my family and friends are insane (no - I mean - really) - nah - they are just my WORLD and this Team Russia is so far beyond phenomenal it's not funny....GRATITUDE OVERLOAD!
Unfortunately - my unbridled enthusiasm for 'the great outdoors' (aka lounge 10 feet away) was curbed a bit with meals, infusions and waiting for my luggage to return, but by early afternoon, I was out hanging on the lounge with a NZ lady, Norwegian lady, Canadian man, American Carer and 'my' Aussie Friend! Talk about BLISS!
It certainly shows you how quick your time here REALLY goes because I remember being EXACTLY the person who had just finished tests and I felt SO BEHIND everyone else who had just had transplants or were out of Isolation!
Bearing this in mind - I really tried to be as helpful as I could and explain that it really does move quickly; I found isolation very therapeutic and no bother whatsoever - was calm and happy each and every day; I describe my Chemo experience but was quick to explain that every experience has been different), talked about Vlad the Neck Impaler and so on! They all at different stages already too but they will share the journey which is GOLD.
I think I'll still be able to spend some time with them which be lovely but I will miss Transplant Birthdays because Hooo-laaa! I'm out on 7 October!! I week to go baby! I week to recuperate, learn, be a support to the others, rest, contemplate, etc.
Oh yeah - you may have seen - hair fall out is a GO. I WAS pulling it out until another a fellow HSCT said OH NO - just let it fall or you'll do root damage! GREAT! I look like....I dunno a ferret who got himself into a tussle. - HAT ON today :)
I'm off to have a REAL SHOWER WITH SOAP and a Toothbrush and Toothpaste so that'll be heavenly!!
As I mentioned - legs are like Jelly so work outs have commenced - just very low key to TRY to get some strength! I'm gunna walk out of here better than I came in that's damn straight (...and then take FULL ADVANTAGE OF WHEELCHAIR ASSISTANCE THROUGH THE AIRPORTS)!!! Hey - I'm only human!
Joyous Overloadus! OUT.
Dr F BOUNCED in this morning and went STRAIGHT to figures! (We share this joy thing). Numbers written straight away show engraftment has taken place! New Stemmies are off to work on a new immune system - little sweethearts!!!
Haemoglobin (normal is 120-160): Mary is 103...nearly.
Platelets (normal is 150-400): Mary is 220 - NORMAL!
Leukocytes (normal is 4-10): Mary is 3.8 (compared to 0.85 yesterday)!!
The door has been open!!! I am allowed in a very small, controlled environment, with all of us in masks, etc for the afternoon!
No more Vodka baths, normal toothpaste and soap etc! Yabba-Dabba-Do !!
Naturally my immune system still shot to pieces BUT...this engraftment has taken a giant leap in the right direction!
I was so unbelievably grateful... I started crying!
He was so happy for my joy!
Now if only my legs would work....they are so so shaky! 10 times worse with MS. No one seems surprised.
And now - I'd better find a cap or scarf post haste!
Yes - even my clothes are retuned today!!!
I still have a good solid week of recovery here and then I'm home !!
I feel blessed beyond compare, so grateful, strengthened, my faith is off the rictor scale, my family and friends are insane (no - I mean - really) - nah - they are just my WORLD and this Team Russia is so far beyond phenomenal it's not funny....GRATITUDE OVERLOAD!
Unfortunately - my unbridled enthusiasm for 'the great outdoors' (aka lounge 10 feet away) was curbed a bit with meals, infusions and waiting for my luggage to return, but by early afternoon, I was out hanging on the lounge with a NZ lady, Norwegian lady, Canadian man, American Carer and 'my' Aussie Friend! Talk about BLISS!
It certainly shows you how quick your time here REALLY goes because I remember being EXACTLY the person who had just finished tests and I felt SO BEHIND everyone else who had just had transplants or were out of Isolation!
Bearing this in mind - I really tried to be as helpful as I could and explain that it really does move quickly; I found isolation very therapeutic and no bother whatsoever - was calm and happy each and every day; I describe my Chemo experience but was quick to explain that every experience has been different), talked about Vlad the Neck Impaler and so on! They all at different stages already too but they will share the journey which is GOLD.
I think I'll still be able to spend some time with them which be lovely but I will miss Transplant Birthdays because Hooo-laaa! I'm out on 7 October!! I week to go baby! I week to recuperate, learn, be a support to the others, rest, contemplate, etc.
Oh yeah - you may have seen - hair fall out is a GO. I WAS pulling it out until another a fellow HSCT said OH NO - just let it fall or you'll do root damage! GREAT! I look like....I dunno a ferret who got himself into a tussle. - HAT ON today :)
I'm off to have a REAL SHOWER WITH SOAP and a Toothbrush and Toothpaste so that'll be heavenly!!
As I mentioned - legs are like Jelly so work outs have commenced - just very low key to TRY to get some strength! I'm gunna walk out of here better than I came in that's damn straight (...and then take FULL ADVANTAGE OF WHEELCHAIR ASSISTANCE THROUGH THE AIRPORTS)!!! Hey - I'm only human!
Joyous Overloadus! OUT.
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