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!!
Thursday, 26 November 2015
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!
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