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.
Wednesday 21 October 2015
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.
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