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!
Sunday 4 October 2015
DAY 29 - RITUXIMAB INFUSION
So it turns out that fear, insecurity, nastiness, aggression are NOT immune to my sterilisation bubble and have been busily building to this morning when I did something I am deeply ashamed of .
I took out my fear and frustration and my PERCEIVED total lack of care of my request out on someone at home.
I take this opportunity to again apologise.
Again - if you can't say something nice - Don't say nothing at all. Terrible guilt ridden morning - I DON'T recommend it when you've been on such a high for so long.
Anyway, today marked the day of my 5-6 hour Rituximab infusion. This is the FINAL STEP in the process!! Tomorrow I will have Vlad removed from my neck and then I get 1.5 days recovery before I board the plan back HOME!!!!!!!!
Rituximab according to Wikipedia is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders
What is does for us, I am lead to understand, is pumps up our immunity and white blood counts, ready for the trip home...but I could be so far embarrassingly wrong!
Anyway - it's in their fighting the good fight!
So today was just spent doing that. Again...it SHATTERED me. I am like a zombie and my legs are STILL so bad...so so bad. AGAIN - no cause for alarm and perfectly normal for most . So I go with that.
I realise now the road to recovery at home may be a little harder than I had blissfully had in my head ...but then I've had brilliant days here where I've been so productive so I'm not going to stew on that either. Patients that went home only last week are feeling amazing and better than in years so it is their positivity I am drawn to.
The article I posted yesterday said - get up - get dressed- do SOMETHING ...and that's what I'm all about so I think in going to be fine. With all Andy, Piper, Mum, Dad, Sisters, Friends have done to prepare my house....I just have to NOT feel guilt on the days when I need to rest. THEY will not be the ones demanding it of me ...it will be ME fighting my own demons there!
Anyway - as I mentioned - I'm shattered (again!) but I am ecstatic too!
I AM DONE!
I AM RID OF MS.
I HAVE A CHANCE AT A WHOLE NEW LIFE.
I AM FREE.
TEARS OF JOY ARE ROLLING DOWN MY CHEEKS.
We laugh here because the last line on the procedure chart is "hospital has a laundry room. Inform staff if you need clothing washed"....so THAT'S where I'm up to on my sheet! WASHING!
My thanks to the PHENOMENAL Dr Fedorenko, Anastasia and their team cannot ever be expressed eloquently enough here. They are just the most loving , holistic, giving, caring, funny, beautiful, dedicated, aware, switched on team. But enough - my gratitude is through the roof and around the world 10 times.
TOMORROW I will write about LOVE. Love of my time in Russia, love of my family, my friends, my journey to get here, but also the love of one of my most amazing, inspiring, divine, beautiful giving friends who ties the knot tomorrow and this fills my heart (to overflowing) with such love. No one deserves it more.
So with forgiveness (I hope), love, gratitude, amazement, joy and growing strength (again I hope) I say goodnight.
Oh ..and numbers for those:
Haemoglobin: 104 (normal 120-160) (this could be pesky periods fault too - I dunno)
Leukocytes 6.85 (normal 4-10)
Platelets 292 (normal 150-400)
Just need those little Haemoglobins to jump and I'll be "normal" as they come. Baaa HHhaAaaarrrRRrrrrRr! :)
I took out my fear and frustration and my PERCEIVED total lack of care of my request out on someone at home.
I take this opportunity to again apologise.
Again - if you can't say something nice - Don't say nothing at all. Terrible guilt ridden morning - I DON'T recommend it when you've been on such a high for so long.
Anyway, today marked the day of my 5-6 hour Rituximab infusion. This is the FINAL STEP in the process!! Tomorrow I will have Vlad removed from my neck and then I get 1.5 days recovery before I board the plan back HOME!!!!!!!!
Rituximab according to Wikipedia is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and autoimmune disorders
What is does for us, I am lead to understand, is pumps up our immunity and white blood counts, ready for the trip home...but I could be so far embarrassingly wrong!
Anyway - it's in their fighting the good fight!
So today was just spent doing that. Again...it SHATTERED me. I am like a zombie and my legs are STILL so bad...so so bad. AGAIN - no cause for alarm and perfectly normal for most . So I go with that.
I realise now the road to recovery at home may be a little harder than I had blissfully had in my head ...but then I've had brilliant days here where I've been so productive so I'm not going to stew on that either. Patients that went home only last week are feeling amazing and better than in years so it is their positivity I am drawn to.
The article I posted yesterday said - get up - get dressed- do SOMETHING ...and that's what I'm all about so I think in going to be fine. With all Andy, Piper, Mum, Dad, Sisters, Friends have done to prepare my house....I just have to NOT feel guilt on the days when I need to rest. THEY will not be the ones demanding it of me ...it will be ME fighting my own demons there!
Anyway - as I mentioned - I'm shattered (again!) but I am ecstatic too!
I AM DONE!
I AM RID OF MS.
I HAVE A CHANCE AT A WHOLE NEW LIFE.
I AM FREE.
TEARS OF JOY ARE ROLLING DOWN MY CHEEKS.
We laugh here because the last line on the procedure chart is "hospital has a laundry room. Inform staff if you need clothing washed"....so THAT'S where I'm up to on my sheet! WASHING!
My thanks to the PHENOMENAL Dr Fedorenko, Anastasia and their team cannot ever be expressed eloquently enough here. They are just the most loving , holistic, giving, caring, funny, beautiful, dedicated, aware, switched on team. But enough - my gratitude is through the roof and around the world 10 times.
TOMORROW I will write about LOVE. Love of my time in Russia, love of my family, my friends, my journey to get here, but also the love of one of my most amazing, inspiring, divine, beautiful giving friends who ties the knot tomorrow and this fills my heart (to overflowing) with such love. No one deserves it more.
So with forgiveness (I hope), love, gratitude, amazement, joy and growing strength (again I hope) I say goodnight.
Oh ..and numbers for those:
Haemoglobin: 104 (normal 120-160) (this could be pesky periods fault too - I dunno)
Leukocytes 6.85 (normal 4-10)
Platelets 292 (normal 150-400)
Just need those little Haemoglobins to jump and I'll be "normal" as they come. Baaa HHhaAaaarrrRRrrrrRr! :)
Saturday 3 October 2015
AN APOLOGY
So this is not the blog of the day but I feel compelled to get this written.
I have constantly rejoiced in how God is in this with me and how safe I feel here and happy and secure. I'd say he'd be a little disappointed in me today....so asking forgiveness is on the schedule !
Well, today I was incredibly unkind to someone from home - all stemmed from my own insecurities, fear of non-immunity, concern that rules weren't being taken seriously, etc.
I AM a positive person...I assure you - but over the last few days I have been stripped to as RAW and vulnerable as I think I could get. "Looks" aside (cos they make me cringe too much) .... MY body is up for the slaughter and it scares me. As you know - I've handled things pretty great (if I do say so myself) and I have loved my time in Russia like I never would have imagined possible....but then - Here in my beautiful Russia - I'm as safe as houses! I'm in a sterile bubble where no one lets you take risks (remember the cuticle debarkle),
But now - my body is now back to it's infancy....so weak, so little, so vunerable...so scary.
Anyway - not a big blog but a personal apology to someone(s) I upset today. I am so sorry and please understand it comes from a place of fear and misunderstanding.
In the wise, wise words of Thumper Rabbit in Bambi. "If you can't say something nice....don't say nothin' at all".
Sorry.
I have constantly rejoiced in how God is in this with me and how safe I feel here and happy and secure. I'd say he'd be a little disappointed in me today....so asking forgiveness is on the schedule !
Well, today I was incredibly unkind to someone from home - all stemmed from my own insecurities, fear of non-immunity, concern that rules weren't being taken seriously, etc.
I AM a positive person...I assure you - but over the last few days I have been stripped to as RAW and vulnerable as I think I could get. "Looks" aside (cos they make me cringe too much) .... MY body is up for the slaughter and it scares me. As you know - I've handled things pretty great (if I do say so myself) and I have loved my time in Russia like I never would have imagined possible....but then - Here in my beautiful Russia - I'm as safe as houses! I'm in a sterile bubble where no one lets you take risks (remember the cuticle debarkle),
But now - my body is now back to it's infancy....so weak, so little, so vunerable...so scary.
Anyway - not a big blog but a personal apology to someone(s) I upset today. I am so sorry and please understand it comes from a place of fear and misunderstanding.
In the wise, wise words of Thumper Rabbit in Bambi. "If you can't say something nice....don't say nothin' at all".
Sorry.
DAY 28 - IN A HAZE
Sorry for those involved in early morning banter over Messenger! I was sharing pictures of my rapidly deteriorating hair line with those that I thought MIGHT be up so I apologise if I got some wrong! Anyway - it was amusing for me at 2am in the morning....
Usual morning routine. 6AM INFUSION and bloods. Tried to get back to sleep and dozed until 8.30 breakie. Dr F came in (yes - it's Saturday) and happily went through results. He's stoked.
Improvement from yesterday and very happy:
Haemoglobin 106 (so close to normal)!! (120-160)
Leukocytes 8.12 (excellent)
Platelets 345 (excellent).
So that was all fabulous but ....I feel ABSOLUTEY SHATTERED. My legs are so shaky and I am incredibly weak. I need to hang onto to everything to walk about (lucky I live in a 3m x 2x box)! He explained that this could be due to the return of the perky period but also probably due to the reduction of steroids can cause this. Also just the fact that I have been immobile for virtually 30 days. He said it will recover and not to worry. This is common Mary. It is fine. Just do not try to much and fall. RELAX.
I am reminded of my fellow PPMSer who at this stage was striding (not really but you know what I mean) down the hallways - he was friggin' awesome +++....frustrating for me but I do understand it's each to his own and most of us girls have felt more tired than before.
So (for once) I listened to my body. I lazed on the bed for almost the entire day. I popped into the lounge at one stage but no one was around so I crawled back to bed for a nap....very 'un-Mary'....
I can't get over it ...just totally shattered. Don 't get me wrong - I don't feel sick or unwell or anything like that but INSANELY T.I.R.E.D. It's now just gone 7.30pm (and for those that now me - this is ridiculous) but I'm going to bed.
I'm spewing because I really want to enjoy every last morsel of time here but today was just not that day. Do the right thing tonight and hopefully onwards and upwards tomorrow me hopes! Only 3.5 days to go!!!
PS - Mind you - I did manage to organise a cake for the staff; confirmed a visit the ATM, confirmed flights, confirmed driver to airport, asked Anastasia to print off a heap of things, washed all my 'smalls' ... so I am STILL ME! :)
But for now - Night Night.
Actually tomorrow might be different again - I think I am having my 5 hour infusion of Rituximab...or maybe that's Monday...and then Vlad leaves my body forever and ...that's it?! So well see what tomorrow turns into!
PS - A super heart felt enormous thank you to those that have read my DAY 26: REMINDER NO IMMUNE SYSTEM UPDATED blog. That's the one that is continually playing on my mind and stressing me SO MUCH so Spaseesba (thank you) for those that have taken the time to read and take on board. Also thank you to my Mum who took Piper in for a check up at the Doc's - got her some supplements - all ready for us to go; And to Andy and my family who all had their whooping cough boosters for me and did all those little extra things for my peace of mind. And Dad for his (no doubt) amazing sign. I love you all so much. Thank you for 'getting it'.
Love you Andy, Pipes, and my Griswald family xxxxsxxxx
Usual morning routine. 6AM INFUSION and bloods. Tried to get back to sleep and dozed until 8.30 breakie. Dr F came in (yes - it's Saturday) and happily went through results. He's stoked.
Improvement from yesterday and very happy:
Haemoglobin 106 (so close to normal)!! (120-160)
Leukocytes 8.12 (excellent)
Platelets 345 (excellent).
So that was all fabulous but ....I feel ABSOLUTEY SHATTERED. My legs are so shaky and I am incredibly weak. I need to hang onto to everything to walk about (lucky I live in a 3m x 2x box)! He explained that this could be due to the return of the perky period but also probably due to the reduction of steroids can cause this. Also just the fact that I have been immobile for virtually 30 days. He said it will recover and not to worry. This is common Mary. It is fine. Just do not try to much and fall. RELAX.
I am reminded of my fellow PPMSer who at this stage was striding (not really but you know what I mean) down the hallways - he was friggin' awesome +++....frustrating for me but I do understand it's each to his own and most of us girls have felt more tired than before.
So (for once) I listened to my body. I lazed on the bed for almost the entire day. I popped into the lounge at one stage but no one was around so I crawled back to bed for a nap....very 'un-Mary'....
I can't get over it ...just totally shattered. Don 't get me wrong - I don't feel sick or unwell or anything like that but INSANELY T.I.R.E.D. It's now just gone 7.30pm (and for those that now me - this is ridiculous) but I'm going to bed.
I'm spewing because I really want to enjoy every last morsel of time here but today was just not that day. Do the right thing tonight and hopefully onwards and upwards tomorrow me hopes! Only 3.5 days to go!!!
PS - Mind you - I did manage to organise a cake for the staff; confirmed a visit the ATM, confirmed flights, confirmed driver to airport, asked Anastasia to print off a heap of things, washed all my 'smalls' ... so I am STILL ME! :)
But for now - Night Night.
Actually tomorrow might be different again - I think I am having my 5 hour infusion of Rituximab...or maybe that's Monday...and then Vlad leaves my body forever and ...that's it?! So well see what tomorrow turns into!
PS - A super heart felt enormous thank you to those that have read my DAY 26: REMINDER NO IMMUNE SYSTEM UPDATED blog. That's the one that is continually playing on my mind and stressing me SO MUCH so Spaseesba (thank you) for those that have taken the time to read and take on board. Also thank you to my Mum who took Piper in for a check up at the Doc's - got her some supplements - all ready for us to go; And to Andy and my family who all had their whooping cough boosters for me and did all those little extra things for my peace of mind. And Dad for his (no doubt) amazing sign. I love you all so much. Thank you for 'getting it'.
Love you Andy, Pipes, and my Griswald family xxxxsxxxx
Friday 2 October 2015
DAY 27 - TOPSY TURVY
Well, after my rather emotional day yesterday...I decided my time is too short here and there are new people to meet..and I'm no longer in isolation so I need to enjoy my last few days - regardless of stresses from elsewhere! So, with my own suitcases now returned, I rummaed around for my 'big girl panties' and decided to get on with day.
I was up bright and early for the 7am (I think it's getting earlier) infusion, I had breakie; facebooked, packed, read, got dressed into REAL clothes and even attempted make up (OMG what a joke).
Dr F came to see me mid-morning, as he always does, but was asking if I was okay - was I homesick....stressed? I said I NO NO NO! I AM SO VERY HAPPY HERE but was very frustrated yesterday but just with news from home - but I'm all good. He just said that my numbers dropped slightly which surprised him. All well within range so nothing to worry about
Hemoglobin Thurs: 102; Fri 101 - still not up to range (120-160)
Leukocytes Thurs: 9.34; Fri 6.9 (big drop) - still in 4-10 range
Platelets Thurs: 247; Fri 284 (fine) - still in range (150-400)
He gave me a hug and said it's no problem. We have you. It's all good and fine. Be happy again.
So I was.
To add insult to injury - later in the day I got my period (for the 3rd time since I got here - sorry lads) so I guess that'll change some blood numbers tomorrow too. DAMN STRESS. The whole period thing is not uncommon so I'm just rolling with it. Hopefully will be gone by tomorrow we've both decided (as we do).
So after his visit I went and sat out in the lounge and read etc. Then a massive group of newbies came up...with PIZZA! An Aussie girlfriend I have met before is here now along with a beautiful contingent! Much like my start - some have started chemo today, some just finished testing, some about to start Steroids...a couple with their Vlad's in...etc!
It was SSOOOOOOOO great to chat and share time with this group. Yet another outstanding group of POSITIVE, GRATEFUL, HUMBLE beautiful people. I am blessed beyond measure.
They bought me a supply of goodies (which there is no way I will get through before I leave NEXT WEDNESDAY!!!) But OMG - Kit Kats, M&M's Lays Chips, Milka chocolate ... HEAVEN. So thank you gang! I'll leave (anything) I have left with Kim!! Unless I can cram it in my luggage of course!!!! :)
After a while, the gang went shopping at the markets so I headed back to my room and rung mum and dad, Andy, Pipes etc. Read my book, dozed, packed my bag again....emailed....a nice afternoon and I'm far calmer than yesterday.
So today here it is Friday night.....and I just realised I leave on WEDNESDAY at noon.....4.5 days! How on earth did that happen!!!
I am determined to fully enjoy every last morsel of this experience and these amazing amazing, amazing people for every last second I have . Crap - I may even need to get this ugly pimple head in some photo's. UGH.
My legs are currently 10 times weaker than when I walked in here WITH MS (SO BAD) but I might see if someone can wheel me outside tomorrow and I also want to get to the ATM in the next building.
I don't know if you saw but I shared an article on the FB page about this and the absolute hammering I have put my body through. Between God, Dr F and team Russia I have the most calm, strong, indescribable faith that this has stopped my MS dead in in tracks and I WILL see improvements in time. I have no question in my mind in that.
Okay - gotta go - there's a Kit Kat calling my name next to hot cuppa tea!
Oh - something about footy....something, something ....Go SUNS! :) XXX
I was up bright and early for the 7am (I think it's getting earlier) infusion, I had breakie; facebooked, packed, read, got dressed into REAL clothes and even attempted make up (OMG what a joke).
Dr F came to see me mid-morning, as he always does, but was asking if I was okay - was I homesick....stressed? I said I NO NO NO! I AM SO VERY HAPPY HERE but was very frustrated yesterday but just with news from home - but I'm all good. He just said that my numbers dropped slightly which surprised him. All well within range so nothing to worry about
Hemoglobin Thurs: 102; Fri 101 - still not up to range (120-160)
Leukocytes Thurs: 9.34; Fri 6.9 (big drop) - still in 4-10 range
Platelets Thurs: 247; Fri 284 (fine) - still in range (150-400)
He gave me a hug and said it's no problem. We have you. It's all good and fine. Be happy again.
So I was.
To add insult to injury - later in the day I got my period (for the 3rd time since I got here - sorry lads) so I guess that'll change some blood numbers tomorrow too. DAMN STRESS. The whole period thing is not uncommon so I'm just rolling with it. Hopefully will be gone by tomorrow we've both decided (as we do).
So after his visit I went and sat out in the lounge and read etc. Then a massive group of newbies came up...with PIZZA! An Aussie girlfriend I have met before is here now along with a beautiful contingent! Much like my start - some have started chemo today, some just finished testing, some about to start Steroids...a couple with their Vlad's in...etc!
It was SSOOOOOOOO great to chat and share time with this group. Yet another outstanding group of POSITIVE, GRATEFUL, HUMBLE beautiful people. I am blessed beyond measure.
They bought me a supply of goodies (which there is no way I will get through before I leave NEXT WEDNESDAY!!!) But OMG - Kit Kats, M&M's Lays Chips, Milka chocolate ... HEAVEN. So thank you gang! I'll leave (anything) I have left with Kim!! Unless I can cram it in my luggage of course!!!! :)
After a while, the gang went shopping at the markets so I headed back to my room and rung mum and dad, Andy, Pipes etc. Read my book, dozed, packed my bag again....emailed....a nice afternoon and I'm far calmer than yesterday.
So today here it is Friday night.....and I just realised I leave on WEDNESDAY at noon.....4.5 days! How on earth did that happen!!!
I am determined to fully enjoy every last morsel of this experience and these amazing amazing, amazing people for every last second I have . Crap - I may even need to get this ugly pimple head in some photo's. UGH.
My legs are currently 10 times weaker than when I walked in here WITH MS (SO BAD) but I might see if someone can wheel me outside tomorrow and I also want to get to the ATM in the next building.
I don't know if you saw but I shared an article on the FB page about this and the absolute hammering I have put my body through. Between God, Dr F and team Russia I have the most calm, strong, indescribable faith that this has stopped my MS dead in in tracks and I WILL see improvements in time. I have no question in my mind in that.
Okay - gotta go - there's a Kit Kat calling my name next to hot cuppa tea!
Oh - something about footy....something, something ....Go SUNS! :) XXX
Thursday 1 October 2015
DAY 26 - REMINDER - NO IMMUNE SYSTEM.
For what had promised to be a beautiful day mingling with my fellow patients and the like - today has been a (my first) downer. not bad for 26 days in.
I bring you all back to MY (NON-EXISTENT) IMMUNE SYSTEM
I thought I had explained pretty well the rules and expectations for my return.
Virus and bacteria hang around all the time...and if YOU ARE immunised, you'll never know - but if they find me ...different story. I'm open slather.
All of you have (I suspect) strong immune systems and/or have been vaccinated to protect you from all sorts of things. BUT this doesn't mean that you can't be a carrier and thus, putting a little fledging like me, at risk.
I have friends and family who have been (or are currently) travelling to remote areas around Australia and 3rd world places in the holidays and, to be honest, this is SINGLE MOST THING THAT scares the bejesus out of me.
Sure - also kids get sick and Piper will be around kids....and we all have pets - who are FOR THE MOST PART SAFE IN OUR YARDS as long as the yard is kept poop free (Andy) and they avoid contracting things from other social, (feral?) animals, dirt, kids.
SO A REMINDER. IF YOU KNOW ME AND THINK YOU WANT TO SEE ME (AFTER THIS RANT THAT IS)!
THIS ALL DEFINITELY APPLIES TO YOU
1) FROM THE SECOND YOU READ THIS - ABSOLUTELY NO KISSING ANDY, PIPER (OR ME). Sorry de Nys reunioners. Little sneaky kisses aren't cute - they dangerous.
2) I'M CALLING IT. NO VISITORS FOR FIRST 2-3 WEEKS. My Haematologist can then make the call from there. This is possibly quite OCD but hey - I am not jeopardising this! Of course, Andy and Piper will still be living at home...and maybe mum and dad fleetingly but that's it.
3) No flowers. No dust/pollen etc allowed in house...whimper. Chocolate and coffee and fine to drop off at the door though.
4) TO STREAMLINE THIS ONE - NO ANIMALS TO VISIT WHATSOEVER AND BASIL CANNOT GO TO PLAY AT OTHER DOG'S HOUSES (OR THE DOG PARK SORRY BAS)!
5) NO HELP NEEDED WITH THE HOUSE. I'm sure in time, Mum and my sisters will lend a hand at times - but no chemicals can be used in house and I have a great cleaning system (Norwex). Food is going to be a learning curb for us all. Although I don't think we'd turn away a good lasagne, roast or casserole! (coming into summer - sheesh)! Again, needs to be something I can microwave to kill off any bacteria.
ONCE I CAN HAVE VISITORS (HOPEFULLY SOONER RATHR THAN LATER) - I WILL LET YOU KNOW.
1) ABSOLUTELY STILL NO KISSING PIPER, ANDY OR ME. Little sneaky kisses aren't cute...they're dangerous.
2) If you have been round sick people or have a sniffle...PLEASE DO NOT VISIT.
3) Been around sick kids or someone with man flu? Yours or others - PLEASE DO NOT VISIT.
4) If you have been around communities that carry sickness (3rd world; hospitals; remote communities and the like), even if you feel fit as a Malley Bull, please visit another time - because YOUR immune system is strong while mine is in it's infancy. You could be carrying something that is critical for me - but harmless to you.
5) USE HAND SANITISER ALL THE TIME ...as you enter, after the loo, using the iPad, etc! Once I allow visitors I may even hook you up in a mask.
6) NO SHOES IN THE HOSUE ..for Andy's sake as much as mine! We have a lot of floor space to keep clean!
7) STILL A BLANKLET RULE - "NO" TO ALL ANIMALS.
8) I can't eat fresh fruit or veg (salad) - can you believe it - and everything needs to be microwaved to kill the bacteria.
9) Trust me! I am NOT trying to keep you away but I am quite nervous ...NO - NOW I AM ABSOLUTELY BLOODY PETRIFIED about the 'no-immune' system especially in the early days.
SO AGAIN - IF YOU KNOW ME AT ALL - THESE RULES APPLY TO YOU.
PLEASE USE COMMON SENSE AND RESPECT MY WISHES - EVEN IF YOU THINK THEY'RE OVER THE TOP. MY LIFE - NOT YOURS.
I've heard of several patients that have ended up in critical condition on their return, just because they thought doing 1 little thing would be okay. I can think of 2 that ended up in hospital for quite a prolonged time after only 1 week home.
I'm SOOOOO nervous about the flight (although I'm told business class is lush) - I'm nervous about eating on the plane - I'm nervous about animals and sick kids from school - I'm INSANELY nervous about lots of my friends and family who have been travelling in Central Australia, Bali, Thailand.
I just want to hug and kiss my family when I get home and I don't know how I'm not going to do that when I see Pipes, Andy, Mum and Dad....but we all know the rules....
Thank you in advance.
Anyone that knows me, please feel free to ask me questions.
SORRY FOR THE SOAP BOX. I have spent the ENTIRE DAY in tears wondering why people aren't respecting my wishes and worrying about this. My first tears in 26 days and this was supposed to be a joyous day of release for me.
Please don't jeopordise this for me and my family.
As you may have seen, I was nervously picking just my cuticles and the nurses jumped on me and put antiseptic on straight away to avoid bacteria getting in and causing infection. Things are real serious real quick....but just for a time I am sure. See! Even my pretty nails got hammered! :( How RAW do they have to make me!
OCD MARY SIGNING OUT FOR ANOTHER SLEEPLESS NIGHT ME THINKS.
I bring you all back to MY (NON-EXISTENT) IMMUNE SYSTEM
I thought I had explained pretty well the rules and expectations for my return.
Virus and bacteria hang around all the time...and if YOU ARE immunised, you'll never know - but if they find me ...different story. I'm open slather.
All of you have (I suspect) strong immune systems and/or have been vaccinated to protect you from all sorts of things. BUT this doesn't mean that you can't be a carrier and thus, putting a little fledging like me, at risk.
I have friends and family who have been (or are currently) travelling to remote areas around Australia and 3rd world places in the holidays and, to be honest, this is SINGLE MOST THING THAT scares the bejesus out of me.
Sure - also kids get sick and Piper will be around kids....and we all have pets - who are FOR THE MOST PART SAFE IN OUR YARDS as long as the yard is kept poop free (Andy) and they avoid contracting things from other social, (feral?) animals, dirt, kids.
SO A REMINDER. IF YOU KNOW ME AND THINK YOU WANT TO SEE ME (AFTER THIS RANT THAT IS)!
THIS ALL DEFINITELY APPLIES TO YOU
1) FROM THE SECOND YOU READ THIS - ABSOLUTELY NO KISSING ANDY, PIPER (OR ME). Sorry de Nys reunioners. Little sneaky kisses aren't cute - they dangerous.
2) I'M CALLING IT. NO VISITORS FOR FIRST 2-3 WEEKS. My Haematologist can then make the call from there. This is possibly quite OCD but hey - I am not jeopardising this! Of course, Andy and Piper will still be living at home...and maybe mum and dad fleetingly but that's it.
3) No flowers. No dust/pollen etc allowed in house...whimper. Chocolate and coffee and fine to drop off at the door though.
4) TO STREAMLINE THIS ONE - NO ANIMALS TO VISIT WHATSOEVER AND BASIL CANNOT GO TO PLAY AT OTHER DOG'S HOUSES (OR THE DOG PARK SORRY BAS)!
5) NO HELP NEEDED WITH THE HOUSE. I'm sure in time, Mum and my sisters will lend a hand at times - but no chemicals can be used in house and I have a great cleaning system (Norwex). Food is going to be a learning curb for us all. Although I don't think we'd turn away a good lasagne, roast or casserole! (coming into summer - sheesh)! Again, needs to be something I can microwave to kill off any bacteria.
ONCE I CAN HAVE VISITORS (HOPEFULLY SOONER RATHR THAN LATER) - I WILL LET YOU KNOW.
1) ABSOLUTELY STILL NO KISSING PIPER, ANDY OR ME. Little sneaky kisses aren't cute...they're dangerous.
2) If you have been round sick people or have a sniffle...PLEASE DO NOT VISIT.
3) Been around sick kids or someone with man flu? Yours or others - PLEASE DO NOT VISIT.
4) If you have been around communities that carry sickness (3rd world; hospitals; remote communities and the like), even if you feel fit as a Malley Bull, please visit another time - because YOUR immune system is strong while mine is in it's infancy. You could be carrying something that is critical for me - but harmless to you.
5) USE HAND SANITISER ALL THE TIME ...as you enter, after the loo, using the iPad, etc! Once I allow visitors I may even hook you up in a mask.
6) NO SHOES IN THE HOSUE ..for Andy's sake as much as mine! We have a lot of floor space to keep clean!
7) STILL A BLANKLET RULE - "NO" TO ALL ANIMALS.
8) I can't eat fresh fruit or veg (salad) - can you believe it - and everything needs to be microwaved to kill the bacteria.
9) Trust me! I am NOT trying to keep you away but I am quite nervous ...NO - NOW I AM ABSOLUTELY BLOODY PETRIFIED about the 'no-immune' system especially in the early days.
SO AGAIN - IF YOU KNOW ME AT ALL - THESE RULES APPLY TO YOU.
PLEASE USE COMMON SENSE AND RESPECT MY WISHES - EVEN IF YOU THINK THEY'RE OVER THE TOP. MY LIFE - NOT YOURS.
I've heard of several patients that have ended up in critical condition on their return, just because they thought doing 1 little thing would be okay. I can think of 2 that ended up in hospital for quite a prolonged time after only 1 week home.
I'm SOOOOO nervous about the flight (although I'm told business class is lush) - I'm nervous about eating on the plane - I'm nervous about animals and sick kids from school - I'm INSANELY nervous about lots of my friends and family who have been travelling in Central Australia, Bali, Thailand.
I just want to hug and kiss my family when I get home and I don't know how I'm not going to do that when I see Pipes, Andy, Mum and Dad....but we all know the rules....
Thank you in advance.
Anyone that knows me, please feel free to ask me questions.
SORRY FOR THE SOAP BOX. I have spent the ENTIRE DAY in tears wondering why people aren't respecting my wishes and worrying about this. My first tears in 26 days and this was supposed to be a joyous day of release for me.
Please don't jeopordise this for me and my family.
As you may have seen, I was nervously picking just my cuticles and the nurses jumped on me and put antiseptic on straight away to avoid bacteria getting in and causing infection. Things are real serious real quick....but just for a time I am sure. See! Even my pretty nails got hammered! :( How RAW do they have to make me!
OCD MARY SIGNING OUT FOR ANOTHER SLEEPLESS NIGHT ME THINKS.
Wednesday 30 September 2015
DAY 25 - DOOR OPEN!
To save you all a bit of time - the beginning of this is EXACTLY what I wrote on my Facebook page!
Dr F BOUNCED in this morning and went STRAIGHT to figures! (We share this joy thing). Numbers written straight away show engraftment has taken place! New Stemmies are off to work on a new immune system - little sweethearts!!!
Haemoglobin (normal is 120-160): Mary is 103...nearly.
Platelets (normal is 150-400): Mary is 220 - NORMAL!
Leukocytes (normal is 4-10): Mary is 3.8 (compared to 0.85 yesterday)!!
The door has been open!!! I am allowed in a very small, controlled environment, with all of us in masks, etc for the afternoon!
No more Vodka baths, normal toothpaste and soap etc! Yabba-Dabba-Do !!
Naturally my immune system still shot to pieces BUT...this engraftment has taken a giant leap in the right direction!
I was so unbelievably grateful... I started crying!
He was so happy for my joy!
Now if only my legs would work....they are so so shaky! 10 times worse with MS. No one seems surprised.
And now - I'd better find a cap or scarf post haste!
Yes - even my clothes are retuned today!!!
I still have a good solid week of recovery here and then I'm home !!
I feel blessed beyond compare, so grateful, strengthened, my faith is off the rictor scale, my family and friends are insane (no - I mean - really) - nah - they are just my WORLD and this Team Russia is so far beyond phenomenal it's not funny....GRATITUDE OVERLOAD!
Unfortunately - my unbridled enthusiasm for 'the great outdoors' (aka lounge 10 feet away) was curbed a bit with meals, infusions and waiting for my luggage to return, but by early afternoon, I was out hanging on the lounge with a NZ lady, Norwegian lady, Canadian man, American Carer and 'my' Aussie Friend! Talk about BLISS!
It certainly shows you how quick your time here REALLY goes because I remember being EXACTLY the person who had just finished tests and I felt SO BEHIND everyone else who had just had transplants or were out of Isolation!
Bearing this in mind - I really tried to be as helpful as I could and explain that it really does move quickly; I found isolation very therapeutic and no bother whatsoever - was calm and happy each and every day; I describe my Chemo experience but was quick to explain that every experience has been different), talked about Vlad the Neck Impaler and so on! They all at different stages already too but they will share the journey which is GOLD.
I think I'll still be able to spend some time with them which be lovely but I will miss Transplant Birthdays because Hooo-laaa! I'm out on 7 October!! I week to go baby! I week to recuperate, learn, be a support to the others, rest, contemplate, etc.
Oh yeah - you may have seen - hair fall out is a GO. I WAS pulling it out until another a fellow HSCT said OH NO - just let it fall or you'll do root damage! GREAT! I look like....I dunno a ferret who got himself into a tussle. - HAT ON today :)
I'm off to have a REAL SHOWER WITH SOAP and a Toothbrush and Toothpaste so that'll be heavenly!!
As I mentioned - legs are like Jelly so work outs have commenced - just very low key to TRY to get some strength! I'm gunna walk out of here better than I came in that's damn straight (...and then take FULL ADVANTAGE OF WHEELCHAIR ASSISTANCE THROUGH THE AIRPORTS)!!! Hey - I'm only human!
Joyous Overloadus! OUT.
Dr F BOUNCED in this morning and went STRAIGHT to figures! (We share this joy thing). Numbers written straight away show engraftment has taken place! New Stemmies are off to work on a new immune system - little sweethearts!!!
Haemoglobin (normal is 120-160): Mary is 103...nearly.
Platelets (normal is 150-400): Mary is 220 - NORMAL!
Leukocytes (normal is 4-10): Mary is 3.8 (compared to 0.85 yesterday)!!
The door has been open!!! I am allowed in a very small, controlled environment, with all of us in masks, etc for the afternoon!
No more Vodka baths, normal toothpaste and soap etc! Yabba-Dabba-Do !!
Naturally my immune system still shot to pieces BUT...this engraftment has taken a giant leap in the right direction!
I was so unbelievably grateful... I started crying!
He was so happy for my joy!
Now if only my legs would work....they are so so shaky! 10 times worse with MS. No one seems surprised.
And now - I'd better find a cap or scarf post haste!
Yes - even my clothes are retuned today!!!
I still have a good solid week of recovery here and then I'm home !!
I feel blessed beyond compare, so grateful, strengthened, my faith is off the rictor scale, my family and friends are insane (no - I mean - really) - nah - they are just my WORLD and this Team Russia is so far beyond phenomenal it's not funny....GRATITUDE OVERLOAD!
Unfortunately - my unbridled enthusiasm for 'the great outdoors' (aka lounge 10 feet away) was curbed a bit with meals, infusions and waiting for my luggage to return, but by early afternoon, I was out hanging on the lounge with a NZ lady, Norwegian lady, Canadian man, American Carer and 'my' Aussie Friend! Talk about BLISS!
It certainly shows you how quick your time here REALLY goes because I remember being EXACTLY the person who had just finished tests and I felt SO BEHIND everyone else who had just had transplants or were out of Isolation!
Bearing this in mind - I really tried to be as helpful as I could and explain that it really does move quickly; I found isolation very therapeutic and no bother whatsoever - was calm and happy each and every day; I describe my Chemo experience but was quick to explain that every experience has been different), talked about Vlad the Neck Impaler and so on! They all at different stages already too but they will share the journey which is GOLD.
I think I'll still be able to spend some time with them which be lovely but I will miss Transplant Birthdays because Hooo-laaa! I'm out on 7 October!! I week to go baby! I week to recuperate, learn, be a support to the others, rest, contemplate, etc.
Oh yeah - you may have seen - hair fall out is a GO. I WAS pulling it out until another a fellow HSCT said OH NO - just let it fall or you'll do root damage! GREAT! I look like....I dunno a ferret who got himself into a tussle. - HAT ON today :)
I'm off to have a REAL SHOWER WITH SOAP and a Toothbrush and Toothpaste so that'll be heavenly!!
As I mentioned - legs are like Jelly so work outs have commenced - just very low key to TRY to get some strength! I'm gunna walk out of here better than I came in that's damn straight (...and then take FULL ADVANTAGE OF WHEELCHAIR ASSISTANCE THROUGH THE AIRPORTS)!!! Hey - I'm only human!
Joyous Overloadus! OUT.
Tuesday 29 September 2015
DAY 24 - CLEAN I SEE A LIGHT???/
So the days are slowly moving along and each day is a day closer to release .. and HOME,
Today begun the same as before. Awake WAY too early, infusion at 7am, find things to fill the day....
Today I tried to rest a fair bit...read on the bed...looked at Ezibuy catalogues online and did a bit of Christmas shopping. I also organised accommodation for my first night in Adelaide before I get to return home. Spoke with Mum, my little sister and Andy as my hair started falling out around me....sigh.
All other hair has left or is in the process of leaving. Strangely (and thank God) my eyelashes and eyebrows remain intact. Curious and Curiouser....
Dr F came to see me mid-morning with my blood results. We are both in good moods and he's just a card. He took my blood pressure, had a chat, listen to my heart...chat....I said "SOOoooooo - what are our numbers????" He laughed, pretended to drop the paper, couldn't find his pen, mucked around with the blood pressure machine some more and then filled in numbers for Platelets (185) and Haemoglobin (99) ...both important buy Leukocytes is what I'm interested in. He started laughing and I drummed on the table....commenting that Russian's are NOT funny. He disagreed completely.
What an anti-climax! My numbers was still low 0.85 (remember normal is 4-10) but had gone up from 0.32 yesterday so that's significant.
He explained that it is rising well and as such, it could be possible for me to sit in the lounge tomorrow and then maybe outside on Thursday! He said it is not uncommon for numbers to now jump to over 2 or 3 overnight now that engraftment is occurring!!
Woop Woop!
So all going to plan - I may be able to sit out in the lounge tomorrow arvy! Small victory but how exciting all the same!
There are other Aussies, a Kiwi, Canadian, Americans, Norwegian...plus of course Russians so how exciting!
So now it's only 3.40 but I'm just going to try chill for the day.....I watched a movie yesterday arvy so will do the same. Easily kills a couple of hours !
So hopefully tomorrow I can report from out of the dog house!! Not that it's been bad by any means but it'll be so nice to listen and chat with others rather than sing badly to myself!!
Today begun the same as before. Awake WAY too early, infusion at 7am, find things to fill the day....
Today I tried to rest a fair bit...read on the bed...looked at Ezibuy catalogues online and did a bit of Christmas shopping. I also organised accommodation for my first night in Adelaide before I get to return home. Spoke with Mum, my little sister and Andy as my hair started falling out around me....sigh.
All other hair has left or is in the process of leaving. Strangely (and thank God) my eyelashes and eyebrows remain intact. Curious and Curiouser....
Dr F came to see me mid-morning with my blood results. We are both in good moods and he's just a card. He took my blood pressure, had a chat, listen to my heart...chat....I said "SOOoooooo - what are our numbers????" He laughed, pretended to drop the paper, couldn't find his pen, mucked around with the blood pressure machine some more and then filled in numbers for Platelets (185) and Haemoglobin (99) ...both important buy Leukocytes is what I'm interested in. He started laughing and I drummed on the table....commenting that Russian's are NOT funny. He disagreed completely.
What an anti-climax! My numbers was still low 0.85 (remember normal is 4-10) but had gone up from 0.32 yesterday so that's significant.
He explained that it is rising well and as such, it could be possible for me to sit in the lounge tomorrow and then maybe outside on Thursday! He said it is not uncommon for numbers to now jump to over 2 or 3 overnight now that engraftment is occurring!!
Woop Woop!
So all going to plan - I may be able to sit out in the lounge tomorrow arvy! Small victory but how exciting all the same!
There are other Aussies, a Kiwi, Canadian, Americans, Norwegian...plus of course Russians so how exciting!
So now it's only 3.40 but I'm just going to try chill for the day.....I watched a movie yesterday arvy so will do the same. Easily kills a couple of hours !
So hopefully tomorrow I can report from out of the dog house!! Not that it's been bad by any means but it'll be so nice to listen and chat with others rather than sing badly to myself!!
Monday 28 September 2015
DAY 23 (& A BIT OF DAY 22) - NUMBERS AND STUFF
So I hope yesterday's blog was okay. I am certainly not trying to offend anyone but I am really nervous about infection...in case you didn't gather.
But anyway....I know those that know me, love me and will do the right thing. Breathe.
So to quickly capture yesterday, I was INCREDIBLY tired and wobbly on my feet. I hardly slept worrying about all things infectious and my levels continue to drop. I spent the day typing to friends which was lovely however the Wi-Fi was playing up something fierce (how rude) so I missed calls and was wasting so much time waiting to send stuff (lucky I had time to waste)! But it was fun - I had about 8 different friends I was chatting with so lots of fun! Feel free to Messenger me!! :)
Dr F thinks I can expect engraftment at about day 9! OMG - That's still days away!!!! No problem. He sounded happy with everything and the form we are working from goes up to Day 16 so I'm not complaining! A fellow patient who left last week was up to Day 11... and she's home now and feels amazing....so it all comes out in the wash. And if Day 9 is it, that means I'm only looking at about 3.5 days to go! Then some R&R with fellow patients, an infusion of Rituxlmab and I'm outta here! WITH NO MS!!
SWEET. .
Day 22 numbers: Haemoglobin: 88 Leukocytes: 0.19, Platelets 78. Still going down although Haemoglobin was up which was a good sign (no infusion necessary)
Day 23 numbers RISING: Haemoglobin: 90, Leukocytes: 0.32; Platelets 132....so things have turned overnight! That's exciting I'm pretty sure!
"Normal" numbers are: Haemoglobin 120-160: Leukocytes 4-10: and Platelets 150-400.
I took a sleeping tablet last night to try and get over this insomnia. I had a great (deep) sleep until about 1.30am and then I was bright eyed and bushy tailed again! Messenging some friends and Piper, reading and getting in another few hours sleep before the 7am infusion.
I feel rested although my legs are still horrifically weak. But Dr F said this is normal - due to bloods - not MS.
I think I have an ultrasound today to check my heart, liver, lungs are all doing as they should. I feel really well and alert so hopefully....it's after 3pm thought so maybe I got confused.
My hair has started falling out. As mentioned before - this is wonderful news for my legs and underarms but no so much my head! Funnily enough - my eyebrows and lashes remain intact!
The day has been spent doing very little....I'm trying to save my iPhone and iPad because the charger decided to die (Argh) but I have an Aussie friend who arrived today and she's going to sort me! Phew! It works sporadically so I'm v.e.r.y carefully trying to keep something charged!!
The weather has turned today and everything seems darker. Very similar to my home town - 26 one day; 13 the next! Dr F says that's it. Autumn is here.
He's happy with how things are going and has popped in a few times today just to give me the 'thumbs up' through the glass! He laughs at my enthusiasm!
Food today was provided by the colour beige again. Semolina for breakie; yoghurt, steward apples and chicken for breakie 2; cauliflower and soup for lunch....I'm gunna hazard a guess as ...buckwheat for dinner (which is foul)! So could be rice again.
Well seriously - today is a bore. I feel (really) great but I just have no news to tell you. Spoke with Andy and Pipes, spoke with Mum and Dad, spoke with fellow patient....sent messages to a tonne of you....Another day closer to home. For those that know me - remember I'm good for proofreading or anything like that!!
I might have to succumb to reading or putting on a movie....tomorrow I might do a Montague of characters for you...depends how stir crazy I am. I can be a hard-core romper stomper; a buddist monk; a chef; an ant hill, a pimple...the options are endless!!
But anyway....I know those that know me, love me and will do the right thing. Breathe.
So to quickly capture yesterday, I was INCREDIBLY tired and wobbly on my feet. I hardly slept worrying about all things infectious and my levels continue to drop. I spent the day typing to friends which was lovely however the Wi-Fi was playing up something fierce (how rude) so I missed calls and was wasting so much time waiting to send stuff (lucky I had time to waste)! But it was fun - I had about 8 different friends I was chatting with so lots of fun! Feel free to Messenger me!! :)
Dr F thinks I can expect engraftment at about day 9! OMG - That's still days away!!!! No problem. He sounded happy with everything and the form we are working from goes up to Day 16 so I'm not complaining! A fellow patient who left last week was up to Day 11... and she's home now and feels amazing....so it all comes out in the wash. And if Day 9 is it, that means I'm only looking at about 3.5 days to go! Then some R&R with fellow patients, an infusion of Rituxlmab and I'm outta here! WITH NO MS!!
SWEET. .
Day 22 numbers: Haemoglobin: 88 Leukocytes: 0.19, Platelets 78. Still going down although Haemoglobin was up which was a good sign (no infusion necessary)
Day 23 numbers RISING: Haemoglobin: 90, Leukocytes: 0.32; Platelets 132....so things have turned overnight! That's exciting I'm pretty sure!
"Normal" numbers are: Haemoglobin 120-160: Leukocytes 4-10: and Platelets 150-400.
I took a sleeping tablet last night to try and get over this insomnia. I had a great (deep) sleep until about 1.30am and then I was bright eyed and bushy tailed again! Messenging some friends and Piper, reading and getting in another few hours sleep before the 7am infusion.
I feel rested although my legs are still horrifically weak. But Dr F said this is normal - due to bloods - not MS.
I think I have an ultrasound today to check my heart, liver, lungs are all doing as they should. I feel really well and alert so hopefully....it's after 3pm thought so maybe I got confused.
My hair has started falling out. As mentioned before - this is wonderful news for my legs and underarms but no so much my head! Funnily enough - my eyebrows and lashes remain intact!
The day has been spent doing very little....I'm trying to save my iPhone and iPad because the charger decided to die (Argh) but I have an Aussie friend who arrived today and she's going to sort me! Phew! It works sporadically so I'm v.e.r.y carefully trying to keep something charged!!
The weather has turned today and everything seems darker. Very similar to my home town - 26 one day; 13 the next! Dr F says that's it. Autumn is here.
He's happy with how things are going and has popped in a few times today just to give me the 'thumbs up' through the glass! He laughs at my enthusiasm!
Food today was provided by the colour beige again. Semolina for breakie; yoghurt, steward apples and chicken for breakie 2; cauliflower and soup for lunch....I'm gunna hazard a guess as ...buckwheat for dinner (which is foul)! So could be rice again.
Well seriously - today is a bore. I feel (really) great but I just have no news to tell you. Spoke with Andy and Pipes, spoke with Mum and Dad, spoke with fellow patient....sent messages to a tonne of you....Another day closer to home. For those that know me - remember I'm good for proofreading or anything like that!!
I might have to succumb to reading or putting on a movie....tomorrow I might do a Montague of characters for you...depends how stir crazy I am. I can be a hard-core romper stomper; a buddist monk; a chef; an ant hill, a pimple...the options are endless!!
Sunday 27 September 2015
DAY 22 - IMMUNE SYSTEM
Hi all. This blog will a little different because....well, let's be honest....today has pretty much been a carbon copy of yesterday except that rather than writing in Russian, I've been writing in Messenger.
The Wi-Fi is playing up (how rude) but I'll have a bash at my update.
I may update again later depending on boredom levels!!
So anyway - MY (NON-EXISTENT) IMMUNE SYSTEM
I was up 1/2 the night worrying about this as I had things racing through my head after 'chatting' with a fellow HSCTer. I was talking about visitors that we have coming, and dogs, and travel etc. We were discussing what 'others can be carrying unbeknownst to them' which in fact can be lethal for us.
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 are travelling to remote areas and 3rd world places in the holidays and, to be honest, this is the major thing scares the bejesus out of me.
Kids get sick and Piper will be around kids....
We all have animals.
So a couple of rules that I think I can safety express here:
1) No flowers. No dust/pollen etc allowed in house...whimper. Chocolate and coffee and fine though.
2) If you have been around sick people or have a sniffle...PLEASE don't visit.
3) Sick kids? Yours or others - PLEASE don't 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) If you have pets/animals that may have been subject to same - either at a dog park, in caravan parks, around sick kids or have been around other dogs...can they please not visit (nor visit with our dog). Our poor puss has been relegated outside too as cats are renowned for being filthy! Poor Puss!
5a) If you have been handling animals, also bear this in mind. A house dog might be fine but one that has been sociable may have picked up something from his/her mate...again, unbeknownst to you but no good for me. Basil has had all his shots and needs to avoid other dogs too....which sucks with the new dog park in town!!
6) Hand sanitiser is key in our house...as you enter, after the loo, using the iPad, etc!
7) Shoes off in the house..for Andy's sake as much as mine! We have a lot of floor space to keep clean!
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) No need to come over to clean my house or cook me meals. I have to sterilise everything so I may as well do myself .... and I have 24 hours to kill each day. I'm sure Mum and my sisters will lend a hand at times - but no chemicals etc in house and I have a great cleaning system (Norwex) and 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)!
9) Andy and Pipes will probably like/need a hug every now and then. They've been amazing. But again - only if you're not sick!
10) Trust me! I am NOT trying to keep you away but I am quite nervous about the 'no-immune' system especially in the early days.
I feel a bit of a bully but I'd rather put it out there and be safe rather than sorry. 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 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 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.
The Wi-Fi is playing up (how rude) but I'll have a bash at my update.
I may update again later depending on boredom levels!!
So anyway - MY (NON-EXISTENT) IMMUNE SYSTEM
I was up 1/2 the night worrying about this as I had things racing through my head after 'chatting' with a fellow HSCTer. I was talking about visitors that we have coming, and dogs, and travel etc. We were discussing what 'others can be carrying unbeknownst to them' which in fact can be lethal for us.
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 are travelling to remote areas and 3rd world places in the holidays and, to be honest, this is the major thing scares the bejesus out of me.
Kids get sick and Piper will be around kids....
We all have animals.
So a couple of rules that I think I can safety express here:
1) No flowers. No dust/pollen etc allowed in house...whimper. Chocolate and coffee and fine though.
2) If you have been around sick people or have a sniffle...PLEASE don't visit.
3) Sick kids? Yours or others - PLEASE don't 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) If you have pets/animals that may have been subject to same - either at a dog park, in caravan parks, around sick kids or have been around other dogs...can they please not visit (nor visit with our dog). Our poor puss has been relegated outside too as cats are renowned for being filthy! Poor Puss!
5a) If you have been handling animals, also bear this in mind. A house dog might be fine but one that has been sociable may have picked up something from his/her mate...again, unbeknownst to you but no good for me. Basil has had all his shots and needs to avoid other dogs too....which sucks with the new dog park in town!!
6) Hand sanitiser is key in our house...as you enter, after the loo, using the iPad, etc!
7) Shoes off in the house..for Andy's sake as much as mine! We have a lot of floor space to keep clean!
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) No need to come over to clean my house or cook me meals. I have to sterilise everything so I may as well do myself .... and I have 24 hours to kill each day. I'm sure Mum and my sisters will lend a hand at times - but no chemicals etc in house and I have a great cleaning system (Norwex) and 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)!
9) Andy and Pipes will probably like/need a hug every now and then. They've been amazing. But again - only if you're not sick!
10) Trust me! I am NOT trying to keep you away but I am quite nervous about the 'no-immune' system especially in the early days.
I feel a bit of a bully but I'd rather put it out there and be safe rather than sorry. 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 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 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.
Saturday 26 September 2015
DAY 21 - BUELLER....BUELLER....
I have come to the (not really surprising) conclusion that I am NOT designed for being still..resting....etc. I don't really get "what do you DO to rest"? Sleep? Lay on the bed? Like what actually should I be DOING??
I had my morning (7am today) infusion and was up. I made myself a coffee (thanks to fellow patient Vanessa who left her Nescafe Gold!) and read, caught up on facebook and played card games til breakfast (9am). That's "REST" right??
After breakie I tidied myself up (which - without a hair and makeup routine, is a 2 minute ordeal of trying to avoid the mirror while putting on face cream)!! It's fine - small things amuse me. I put moisture on my legs, my cuticles, lips...repeat. Ho hum!
My hair is very slowly starting to fall out . I was talking to mum yesterday and brushing my head as all these little hairs were falling on the table....this is NOT a bad thing where my legs and underarms are concerned!!
My levels for today continue to drop. Dr F expects a turn around in the next 2 or 3 days but it's different for everyone so who knows?! Haemoglobin 81 (if it goes below 80 I'll need a transfusion which is not uncommon); Leukocytes 0.2; Platelets; 83. All fine apparently. My temperature continues to play funny buggers - 1 minute it's fine at 36.8, the next it hits 37.3 (when the nurses leave, I can't help but continue to play with)...They tested my blood for infections last night and all was clear so no need to worry. Between you and me - I think it's because I have seriously hollow underarm's and the temperature stick is not reading my temperature correctly....but try explaining that in Russian! I feel fine and no-one is concerned so we all roll with it.
Spoke with mum and dad and then, for a lot of today I wrote thank you letters to the multitude of staff here that have made my stay so memorable. This includes of course Dr Fedorendo, Anastasia, Olga, Eirena, Valva, Nicolai and the entire team.
I wrote a note to each of them in Russian and then in English....it took a LONG time. But - I feel good for having had a go! Who knows what I've really said to them ...but word translator seemed to get the gist of what I was trying to say - so we'll trust in the system ! Words like "Enormous Gratitude" featured strongly!! :)
I downloaded some more books, podcasts, music....cruised around ASOS.com and eBay and so on. Pandora doesn't work in Russia but a girlfriend told me about Guvera and that's worked a treat so "happy Mary". Lots (all) the instructions are in Russian but I worked out enough to have tunes all day and just singing and having noise makes the room better!
And suddenly - here we are at dinner time again so another day is ticked off. I've attempted porridge with buckwheat for dinner but think I'm gunna have to find something else...rice...protein bar...freddo frogs ... I dunno - we'll sort something!
Off for my vodka sponge bath and an attempt at exercises (although I am so weak that it's quite embarrassing - good thing I'm in isolation I guess)! Weak = "C'mon Mary you MUST do them to gain some sort of strength"...so I'm having a go! As my levels increase it will be easier I'm sure and the app I'm doing is a big 7 mins so feel like it's okay to have a bash at.
Righto - Russia HSCT HQ Division ISO #328 out.
I had my morning (7am today) infusion and was up. I made myself a coffee (thanks to fellow patient Vanessa who left her Nescafe Gold!) and read, caught up on facebook and played card games til breakfast (9am). That's "REST" right??
After breakie I tidied myself up (which - without a hair and makeup routine, is a 2 minute ordeal of trying to avoid the mirror while putting on face cream)!! It's fine - small things amuse me. I put moisture on my legs, my cuticles, lips...repeat. Ho hum!
My hair is very slowly starting to fall out . I was talking to mum yesterday and brushing my head as all these little hairs were falling on the table....this is NOT a bad thing where my legs and underarms are concerned!!
My levels for today continue to drop. Dr F expects a turn around in the next 2 or 3 days but it's different for everyone so who knows?! Haemoglobin 81 (if it goes below 80 I'll need a transfusion which is not uncommon); Leukocytes 0.2; Platelets; 83. All fine apparently. My temperature continues to play funny buggers - 1 minute it's fine at 36.8, the next it hits 37.3 (when the nurses leave, I can't help but continue to play with)...They tested my blood for infections last night and all was clear so no need to worry. Between you and me - I think it's because I have seriously hollow underarm's and the temperature stick is not reading my temperature correctly....but try explaining that in Russian! I feel fine and no-one is concerned so we all roll with it.
Spoke with mum and dad and then, for a lot of today I wrote thank you letters to the multitude of staff here that have made my stay so memorable. This includes of course Dr Fedorendo, Anastasia, Olga, Eirena, Valva, Nicolai and the entire team.
I wrote a note to each of them in Russian and then in English....it took a LONG time. But - I feel good for having had a go! Who knows what I've really said to them ...but word translator seemed to get the gist of what I was trying to say - so we'll trust in the system ! Words like "Enormous Gratitude" featured strongly!! :)
I downloaded some more books, podcasts, music....cruised around ASOS.com and eBay and so on. Pandora doesn't work in Russia but a girlfriend told me about Guvera and that's worked a treat so "happy Mary". Lots (all) the instructions are in Russian but I worked out enough to have tunes all day and just singing and having noise makes the room better!
And suddenly - here we are at dinner time again so another day is ticked off. I've attempted porridge with buckwheat for dinner but think I'm gunna have to find something else...rice...protein bar...freddo frogs ... I dunno - we'll sort something!
Off for my vodka sponge bath and an attempt at exercises (although I am so weak that it's quite embarrassing - good thing I'm in isolation I guess)! Weak = "C'mon Mary you MUST do them to gain some sort of strength"...so I'm having a go! As my levels increase it will be easier I'm sure and the app I'm doing is a big 7 mins so feel like it's okay to have a bash at.
Righto - Russia HSCT HQ Division ISO #328 out.
Friday 25 September 2015
DAY 20 - GROUNDHOG DAY
Well, because the mornings start so early....the days go for a VERY long time! Plus last night I was messenging a girlfriend on the Gold Coast and then Piper got online around midnight my time....OOopsy.
Anyway - Olga (my favourite nurse) was here last night and she popped in at 6.30am (!!) for infusion 1 for the day....all fine and normal/expected now. Mind you - it's very hard to go back to sleep once you've had 1-2 litres of fluids pumped through your body....so awake I was.
Lucky for me - I had been given a 'job' overnight (with a couple more potential 'jobs' lined up) so I got to work on my VERY SLOW computer doing this. It was super satisfying. However I feel I was done by breakie #2...Oops.
I do have 'real work' that I can do but the connection is so slow here that it can wait until I'm back in Australia and homebound.
I can't believe I have only about 12 days left til I fly home!! That's NOTHING!!
My levels today are still going down. Dr F expects they'll turn around Monday....fingers crossed. Info for the experts is: Haemoglobin: 86 Leucolytes: 0.24 Platelets 90. All fine I'm told. My temperature is playing up a little and this arvy crept up to 37.1 but after a lay down and drink it was back to 36.8 so not sure what's up with that. They're monitoring all the time (as am I almost every hour) so it's all good. It'll just mean an infusion of antibiotics I think if it goes over 37.5.
So this afternoon was spent doing....do you know what - I have no idea. I was on the computer for a bit....played some brain teaser games...read for a bit....talked to Mum, Andy and Piper and here we are at dinner time! Sweet. Another day done.
I'm bypassing tonight's dinner for a stash of fried rice a fellow patient left me...I just can't come at the buckwheat today....
So...other than BORED ... I'm good. Still happy, supported, comfortable, etc. I'm quite weak today but Dr F says that's because of the dropping Leukocytes so all good.
Time for dinner, cuppa, alcohol wash, gargle, bed. Let's see where tomorrow takes us!
Sorry - boring day leads to boring post.....
Anyway - Olga (my favourite nurse) was here last night and she popped in at 6.30am (!!) for infusion 1 for the day....all fine and normal/expected now. Mind you - it's very hard to go back to sleep once you've had 1-2 litres of fluids pumped through your body....so awake I was.
Lucky for me - I had been given a 'job' overnight (with a couple more potential 'jobs' lined up) so I got to work on my VERY SLOW computer doing this. It was super satisfying. However I feel I was done by breakie #2...Oops.
I do have 'real work' that I can do but the connection is so slow here that it can wait until I'm back in Australia and homebound.
I can't believe I have only about 12 days left til I fly home!! That's NOTHING!!
My levels today are still going down. Dr F expects they'll turn around Monday....fingers crossed. Info for the experts is: Haemoglobin: 86 Leucolytes: 0.24 Platelets 90. All fine I'm told. My temperature is playing up a little and this arvy crept up to 37.1 but after a lay down and drink it was back to 36.8 so not sure what's up with that. They're monitoring all the time (as am I almost every hour) so it's all good. It'll just mean an infusion of antibiotics I think if it goes over 37.5.
So this afternoon was spent doing....do you know what - I have no idea. I was on the computer for a bit....played some brain teaser games...read for a bit....talked to Mum, Andy and Piper and here we are at dinner time! Sweet. Another day done.
I'm bypassing tonight's dinner for a stash of fried rice a fellow patient left me...I just can't come at the buckwheat today....
So...other than BORED ... I'm good. Still happy, supported, comfortable, etc. I'm quite weak today but Dr F says that's because of the dropping Leukocytes so all good.
Time for dinner, cuppa, alcohol wash, gargle, bed. Let's see where tomorrow takes us!
Sorry - boring day leads to boring post.....
Thursday 24 September 2015
DAY 19 - STARING AT THE WALLS
I had a perfectly reasonable evening after spending yesterday afternoon working on speech for my little sis. I had my ...100% vodka alcohol wash...gargled....watched a movie....read....slept quite well.
7.30am is the first infusion for the day. The day is broken up by the nurse's visits, 'food' deliveries; Dr F visit, Anastasia popping her head in, etc. All the girls say "Good morning" but it doesn't go much further than that, other than Dr F, Anastasia, Eirena and Olga....so I hang for their shifts!
Official stats for today are that everything is still dropping (which is what should be happening). For those playing at home: Haemoglobin 88; Leukocytes 0.33; Platelets 96. All jibber-jabber to me but I can see what I need to get back to before I'm released so hopefully with good behaviour, all the numbers will turn within a week.....but who knows!
I get a feeling that my temp might be a little high for them as they've checked this quite a few times today and Dr F just called in to say they will check it again at 6pm; 8pm and 10pm. I've had a sneaky go myself and it's sitting around 36.8 which I thought was okay....but maybe not! I feel fine - if not a little weak and lazy...
My day has been filled reading, meditating, colouring, facebooking, talking to mum and dad, dozing and eating. OMG I am not designed for this. I have started stalking my work email to see if there is anything I can do, but with school holiday's starting next week - even that's going to go cold!
I have downloaded an exercise app (just 7 mins of planks, walls sits, push ups, lunges and stuff like that) so that will hit the agenda too. Any good games I should download?? I've tried playing the Trivial Pursuit app; Sudoko and brain trainer games on the iPad but ....seriously boring as bat stuff.
Well - talk about a ray of sunshine!! Just as I was typing this I got a call from my BFF Jodie and my sister-from-another-mister Simone! Calling all the way from Bali!! HOW AWESOME IS TECHNOLOGY!!! I got to giggle at their bartering prowess and pedicure story while they in turn complimented by bad-ass head....(which incidentally I still hate and can't look at - no comments required)...
So great chatting....SO great. Love these girls. What strong, crazy women we are! Hear us Roar!
Just before I sign off I guess I should document "how am I feeling"....I feel...Fine. Good. Positive.
I still can't quite get my head around the fact that I NO LONGER HAVE MS but I feel supported, happy, calm...yeah - good.
Without question I'm a little bored...a little tired....but I don't think they're classed as feelings.
I think that's it for now....I'm quite involved in my book so might read that until dinner than throw on some movie or something.
I have an app on my phone that says HOME is 13 days away....How freaking awesome is that!!! C'mon Stemmies / Bloods - do your thing!!
Day 1.5 done and dusted....Boo-Yeah.
7.30am is the first infusion for the day. The day is broken up by the nurse's visits, 'food' deliveries; Dr F visit, Anastasia popping her head in, etc. All the girls say "Good morning" but it doesn't go much further than that, other than Dr F, Anastasia, Eirena and Olga....so I hang for their shifts!
Official stats for today are that everything is still dropping (which is what should be happening). For those playing at home: Haemoglobin 88; Leukocytes 0.33; Platelets 96. All jibber-jabber to me but I can see what I need to get back to before I'm released so hopefully with good behaviour, all the numbers will turn within a week.....but who knows!
I get a feeling that my temp might be a little high for them as they've checked this quite a few times today and Dr F just called in to say they will check it again at 6pm; 8pm and 10pm. I've had a sneaky go myself and it's sitting around 36.8 which I thought was okay....but maybe not! I feel fine - if not a little weak and lazy...
My day has been filled reading, meditating, colouring, facebooking, talking to mum and dad, dozing and eating. OMG I am not designed for this. I have started stalking my work email to see if there is anything I can do, but with school holiday's starting next week - even that's going to go cold!
I have downloaded an exercise app (just 7 mins of planks, walls sits, push ups, lunges and stuff like that) so that will hit the agenda too. Any good games I should download?? I've tried playing the Trivial Pursuit app; Sudoko and brain trainer games on the iPad but ....seriously boring as bat stuff.
Well - talk about a ray of sunshine!! Just as I was typing this I got a call from my BFF Jodie and my sister-from-another-mister Simone! Calling all the way from Bali!! HOW AWESOME IS TECHNOLOGY!!! I got to giggle at their bartering prowess and pedicure story while they in turn complimented by bad-ass head....(which incidentally I still hate and can't look at - no comments required)...
So great chatting....SO great. Love these girls. What strong, crazy women we are! Hear us Roar!
Just before I sign off I guess I should document "how am I feeling"....I feel...Fine. Good. Positive.
I still can't quite get my head around the fact that I NO LONGER HAVE MS but I feel supported, happy, calm...yeah - good.
Without question I'm a little bored...a little tired....but I don't think they're classed as feelings.
I think that's it for now....I'm quite involved in my book so might read that until dinner than throw on some movie or something.
I have an app on my phone that says HOME is 13 days away....How freaking awesome is that!!! C'mon Stemmies / Bloods - do your thing!!
Day 1.5 done and dusted....Boo-Yeah.
Wednesday 23 September 2015
DAY 18 - LOCK DOWN
I had a very productive night emailing and reading work emails, thinking of all the things that Andy, Mum, Dad and Mons can do before my return (cleaning; shopping, etc)! I'm fairly confident that 2am isn't the ideal time to do this but my mind was racing so I went with it!
Quite funny as it turns out that one of the Aussie girls here was online by 3am and joined by the Norwegian girl for coffee by 4am! So it's not just me!
My levels plummeted overnight (for the experts: Hemo 90; Leukocytes 0.73; Platelets 117) and as such, I got moved into Isolation today. I will remain in here until my levels creep back up to normal and we can see that the stem cells have engrafted back into my system. Could take 6 days...could take 16 - we don't know. The Aussie girls were both done in 6 days but the Norwegian girl took 11 (and was on the verge of crazy)!! BUT she has gone home today while the Aussies are still here so it all comes out in the wash! (sorry - confusing from across the waves I'm sure)!
So....I managed quick goodbyes this morning before I was put into lockdown! My room has been cleaned. I am no longer allowed to use my toothbrush (just gargle) and I need to wash my body with ...100% vodka. So that's interesting!! :)
My bags have all been taken but I'm left with food, colouring stuff and electrical stuff so it will be fine. I am going to work out a routine for myself I think. I have a yoga app and an exercise app that I will do....maybe colour....pray/meditate....watch a movie ....read.....crosswords/sudoko...something anyway. I don't cope well with just 'time'....I need to be organised. (work people - if you need proofreading done...:)) Sorry/NOT sorry I can't help out with the filing!
I can't get Pandora here in Russia but I've got (very glitchy) iTunes so I have music also.
So yes - I'm in my bubble so can't tell you much more. I have been allowed to leave 'my wall' up (they just had to spray it) and all my photo's so I'm happy about that. They all love my room and I thought what I did was 'the norm'....turns out not so!
Right now I'm going to try and do a speech for my little sister...so that should eat up the afternoon. As a trade she's going to make me roast veggies when I get home! (I'm pretty confident that makes me the winner this time round)!
See you tomorrow from 'the Cell' !
Who knows how random these will get from now on!!!
Quite funny as it turns out that one of the Aussie girls here was online by 3am and joined by the Norwegian girl for coffee by 4am! So it's not just me!
My levels plummeted overnight (for the experts: Hemo 90; Leukocytes 0.73; Platelets 117) and as such, I got moved into Isolation today. I will remain in here until my levels creep back up to normal and we can see that the stem cells have engrafted back into my system. Could take 6 days...could take 16 - we don't know. The Aussie girls were both done in 6 days but the Norwegian girl took 11 (and was on the verge of crazy)!! BUT she has gone home today while the Aussies are still here so it all comes out in the wash! (sorry - confusing from across the waves I'm sure)!
So....I managed quick goodbyes this morning before I was put into lockdown! My room has been cleaned. I am no longer allowed to use my toothbrush (just gargle) and I need to wash my body with ...100% vodka. So that's interesting!! :)
My bags have all been taken but I'm left with food, colouring stuff and electrical stuff so it will be fine. I am going to work out a routine for myself I think. I have a yoga app and an exercise app that I will do....maybe colour....pray/meditate....watch a movie ....read.....crosswords/sudoko...something anyway. I don't cope well with just 'time'....I need to be organised. (work people - if you need proofreading done...:)) Sorry/NOT sorry I can't help out with the filing!
I can't get Pandora here in Russia but I've got (very glitchy) iTunes so I have music also.
So yes - I'm in my bubble so can't tell you much more. I have been allowed to leave 'my wall' up (they just had to spray it) and all my photo's so I'm happy about that. They all love my room and I thought what I did was 'the norm'....turns out not so!
Right now I'm going to try and do a speech for my little sister...so that should eat up the afternoon. As a trade she's going to make me roast veggies when I get home! (I'm pretty confident that makes me the winner this time round)!
See you tomorrow from 'the Cell' !
Who knows how random these will get from now on!!!
Tuesday 22 September 2015
DAY 17 - HEAD SHAVE...TRANSPLANT DAY!!!
PART 1 - NOODY NUT
I kept comparing this day to the birth of a child which is silly of course.....I needed to go through the 'pain' of having my head shaved and then enjoy this WHOLE NEW LIFE that I am about to be given!!! A terrible analogy but it got me through the morning!!
I sat out on the lounge waiting....waiting...for one of the nurses to give me a call...and then BANG...there she was (1st contraction). At around 10.40am, a young lovely nurse called "Mary? Mary?" (2nd contraction) with clippers in hand!!!!
And then (very much unlike labour, hence the crap analogy) - 5 minutes later it was all gone and I was an official romper stomper. You may have seen the photo on my page. For the record....I hate it. I feel horrid and unattractive and unfeminine and bleaugh...and I don't need the compliments (but thank you!) and that's just how I feel. I'm vain enough to admit it.
On the upside of course - no need to go looking for a Halloween costume this year !! Uncle Fester is in da house.
So I had a cry, tried putting on make up, cried a bit more and then got over it. It's hair. It'll grow back. There are wigs. My little sister is a hairdresser. THIS IS TEMPORARY.
NO MS FOREVER....WAY WORTH IT.
I sucked it up; got over my pity-party for one and then chatted with my fellow baldies who were (of course) complimentary as everyone is. I need to see it as a Badge of Honour or a Rite of Passage. This girls certainly don't care what I look like (nor I them) and after some easy chatter, all was well with the world again.
PART 2 OF THE DAY - HAPPY 'DAY 0' BIRTHDAY TO ME!
At around 12.30 - 1pm, Nicolai came looking for me, ready to start the Transplant! I was set up in my room and Nicolai, Anastasia, Dr Fedorenko and Valva were with me. An infusion was first put through and then about 1/2 way through that, they implanted the stem cells back into my body!
It was intense. Not painful but ...yeah, intense. I had a tomato taste in my mouth, heaviness on my chest, the oxygen was splattering water all over me, and I was shaking like jelly all over. Really quite indescribable. But no pain for anyone researching....all I can keep thinking it...that was intense!!
After that (stem cells all safely back in), the infusion was finished and I was left to rest for a bit, my body still shaking - like popping candy shaking.....and then...JOB DONE.
Officially, Dr F and the team (including me) have removed MS from my body (thanks to the b**** that is Chemo) and we have transplanted healthy stem cells back into my body to help rebuild a clean immune system!! My head just can't get around it!! How AMAZING is that!!
Of course, for me this does not necessarily mean I will see improvements - as the procedure doesn't claim to fix established lesions it just STOPS further progression....BUT I've seen a lot of improvement in others with my type of MS. I think it's safe to say that I'm a determined little so-and-so, and as such I will do the work required to gain whatever I can! Both Dr F and I are pretty confident here :). I think he gets me!
I'm sure many readers are not religious or spiritual but I can honestly say I felt very connected and safe in knowledge that God has had me all through this. I've never felt alone and I really feel that I've been carried through the tough times (and all of you slugging back wines for me has definitely helped too, I have no doubt)! It's been a blessing: this 'journey'...the community support with fundraising and following my page; the new friendships; the people I've met here at this time, the Doctor and team, the challenges that I faced up to...yeah...the timing was right I guess....I feel God is right in the trenches with me. I feel safe.
Anyway - it just feels surreal. I can't get my head around it - probably because I'm still hobbling etc but I am SOOOOO HAPPY right now!!!! I WAS SOMEONE WHO USED TO HAVE MS.
PS ....CRAP! I just went to the ladies and scared the crap out of myself in the mirror with this head. This is gunna take some getting used to!
MS KICKED TO THE CURB PEOPLE! OUT - GONE - NEVER TO RETURN. DONE.
I kept comparing this day to the birth of a child which is silly of course.....I needed to go through the 'pain' of having my head shaved and then enjoy this WHOLE NEW LIFE that I am about to be given!!! A terrible analogy but it got me through the morning!!
I sat out on the lounge waiting....waiting...for one of the nurses to give me a call...and then BANG...there she was (1st contraction). At around 10.40am, a young lovely nurse called "Mary? Mary?" (2nd contraction) with clippers in hand!!!!
And then (very much unlike labour, hence the crap analogy) - 5 minutes later it was all gone and I was an official romper stomper. You may have seen the photo on my page. For the record....I hate it. I feel horrid and unattractive and unfeminine and bleaugh...and I don't need the compliments (but thank you!) and that's just how I feel. I'm vain enough to admit it.
On the upside of course - no need to go looking for a Halloween costume this year !! Uncle Fester is in da house.
So I had a cry, tried putting on make up, cried a bit more and then got over it. It's hair. It'll grow back. There are wigs. My little sister is a hairdresser. THIS IS TEMPORARY.
NO MS FOREVER....WAY WORTH IT.
I sucked it up; got over my pity-party for one and then chatted with my fellow baldies who were (of course) complimentary as everyone is. I need to see it as a Badge of Honour or a Rite of Passage. This girls certainly don't care what I look like (nor I them) and after some easy chatter, all was well with the world again.
PART 2 OF THE DAY - HAPPY 'DAY 0' BIRTHDAY TO ME!
At around 12.30 - 1pm, Nicolai came looking for me, ready to start the Transplant! I was set up in my room and Nicolai, Anastasia, Dr Fedorenko and Valva were with me. An infusion was first put through and then about 1/2 way through that, they implanted the stem cells back into my body!
It was intense. Not painful but ...yeah, intense. I had a tomato taste in my mouth, heaviness on my chest, the oxygen was splattering water all over me, and I was shaking like jelly all over. Really quite indescribable. But no pain for anyone researching....all I can keep thinking it...that was intense!!
After that (stem cells all safely back in), the infusion was finished and I was left to rest for a bit, my body still shaking - like popping candy shaking.....and then...JOB DONE.
Officially, Dr F and the team (including me) have removed MS from my body (thanks to the b**** that is Chemo) and we have transplanted healthy stem cells back into my body to help rebuild a clean immune system!! My head just can't get around it!! How AMAZING is that!!
Of course, for me this does not necessarily mean I will see improvements - as the procedure doesn't claim to fix established lesions it just STOPS further progression....BUT I've seen a lot of improvement in others with my type of MS. I think it's safe to say that I'm a determined little so-and-so, and as such I will do the work required to gain whatever I can! Both Dr F and I are pretty confident here :). I think he gets me!
I'm sure many readers are not religious or spiritual but I can honestly say I felt very connected and safe in knowledge that God has had me all through this. I've never felt alone and I really feel that I've been carried through the tough times (and all of you slugging back wines for me has definitely helped too, I have no doubt)! It's been a blessing: this 'journey'...the community support with fundraising and following my page; the new friendships; the people I've met here at this time, the Doctor and team, the challenges that I faced up to...yeah...the timing was right I guess....I feel God is right in the trenches with me. I feel safe.
Anyway - it just feels surreal. I can't get my head around it - probably because I'm still hobbling etc but I am SOOOOO HAPPY right now!!!! I WAS SOMEONE WHO USED TO HAVE MS.
PS ....CRAP! I just went to the ladies and scared the crap out of myself in the mirror with this head. This is gunna take some getting used to!
MS KICKED TO THE CURB PEOPLE! OUT - GONE - NEVER TO RETURN. DONE.
Monday 21 September 2015
DAY 16 - REST DAY
Today I still woke a little 'seedy' and had an ordinary night (but nothing on the night before). Lots of weird dreams and awake times playing havoc with my sleep time....at one stage I was on a pirate ship and then I was reciting a poem for ...somebody. I don't think I actually got to BE a pirate but....weird, weird, weird.
They are pumping that many fluids and medications through me that no wonder my brain is a little water logged!
Anyway - today was my much anticipated REST DAY...AHHhhhh. As you may have seen, the day was incredible - 22 degrees, sunny, slight breeze. I managed about 1/2 an hour out in the sun which was absolute bliss. I would have stayed longer had nature not called (calls ALL the time - again with all these fluids being pumped through). BUT it was great.
My walking was weaker than normal (disappointing?) but I guess that's to be expected considering I haven't walked farther than the lounge (which is about 10 metres away) since I got in. The confidence was a little shot!! Another patient is also quite weak after isolation so I'm taking it as normal.
I was doing exercises each night but the Chemo kinda put a stop to that - will start again come Isolation time!
After my outdoor jaunt, I rang Andy/Piper (having beautiful steak dinner at one of my sister's houses) and then mum and dad.
Then I went out to chat with a fellow patient before she started her final 5 hour infusion! The 3 girls I've met and been chatting with all had this infusion today which is the FINAL step before discharge (well, apart from having the line removed from their necks tomorrow)!
I fluffed around, read, cleaned...waiting for someone to call me for the shave!!
At 4pm the other girls (and one of the carer hubby's) all emerged so we had a great chat, comparing notes, families, schools, kids...and a little bit of MS-FREE life too. Really great bunch.
They informed me that I actually have to ask to have my head shaved! Doh! It was late in the day but I caught Anastasia and she said they can do in the morning for me...like, GREAT. She just said don't worry - tomorrow is a CELEBRATION!!!!
So, after gas-bagging and comparing hair stories, we all left for dinner. I then tidied my bags, ready for them to be taken away in a couple of days (not allowed in Isolation).
So - it really was a rest day and I'm glad for it. I feel good again - got some sun - had a laugh etc. Tomorrow will be the head shave and then sometime in the afternoon will be...TRANSLANT TIME!! This my friends, is my new MS-FREE BIRTHDAY (or Day 0)!
It blows my mind to think about! Here we are....on the eve of NO-MORE-MS.
Cakes, chocolate and lemonade around 4pm tomorrow!!
Crap - doubt I'll sleep much tonight either!!!
See you for the celebrations tomorrow!
They are pumping that many fluids and medications through me that no wonder my brain is a little water logged!
Anyway - today was my much anticipated REST DAY...AHHhhhh. As you may have seen, the day was incredible - 22 degrees, sunny, slight breeze. I managed about 1/2 an hour out in the sun which was absolute bliss. I would have stayed longer had nature not called (calls ALL the time - again with all these fluids being pumped through). BUT it was great.
My walking was weaker than normal (disappointing?) but I guess that's to be expected considering I haven't walked farther than the lounge (which is about 10 metres away) since I got in. The confidence was a little shot!! Another patient is also quite weak after isolation so I'm taking it as normal.
I was doing exercises each night but the Chemo kinda put a stop to that - will start again come Isolation time!
After my outdoor jaunt, I rang Andy/Piper (having beautiful steak dinner at one of my sister's houses) and then mum and dad.
Then I went out to chat with a fellow patient before she started her final 5 hour infusion! The 3 girls I've met and been chatting with all had this infusion today which is the FINAL step before discharge (well, apart from having the line removed from their necks tomorrow)!
I fluffed around, read, cleaned...waiting for someone to call me for the shave!!
At 4pm the other girls (and one of the carer hubby's) all emerged so we had a great chat, comparing notes, families, schools, kids...and a little bit of MS-FREE life too. Really great bunch.
They informed me that I actually have to ask to have my head shaved! Doh! It was late in the day but I caught Anastasia and she said they can do in the morning for me...like, GREAT. She just said don't worry - tomorrow is a CELEBRATION!!!!
So, after gas-bagging and comparing hair stories, we all left for dinner. I then tidied my bags, ready for them to be taken away in a couple of days (not allowed in Isolation).
So - it really was a rest day and I'm glad for it. I feel good again - got some sun - had a laugh etc. Tomorrow will be the head shave and then sometime in the afternoon will be...TRANSLANT TIME!! This my friends, is my new MS-FREE BIRTHDAY (or Day 0)!
It blows my mind to think about! Here we are....on the eve of NO-MORE-MS.
Cakes, chocolate and lemonade around 4pm tomorrow!!
Crap - doubt I'll sleep much tonight either!!!
See you for the celebrations tomorrow!
Sunday 20 September 2015
DAY 15 - CHEMO IS DONE.
Well....what a horrible, horrible, night!
For me, Day 3 Chemo was N.A.S.T.Y. I was awake most of the night with nausea, stomach cramps, bloatedness, (pee stops), etc. The nurse on duty (Olga) took beautiful care of me but every time I had something for the pain, it would only return in about 1.5 hours so was just bleaugh...really crap.
But today heralded the FINAL day of Chemo for me. 1 day....c'mon...we can do a day.
Thanks to all your prayers, wine drinking, support etc...today (so far) has been absolutely fine. I got up, got dressed, ate all my food, chatted with the fellow patients (now all out of ISO) both in the morning and this afternoon and so on.
Be buggered if I was go to let it throw me around like it did yesterday.
I didn't venture outside (which I should have because it's a lovely 'Indian summer' here at the moment), but the window was open in the lounge and that was lovely (small things)!!
Dr F came in and checked on me this morning and I was quite teary from the night before but he's so reassuring...'1 day. You are doing such a good job. Tomorrow you rest. And then NEW LIFE."
He's very calming and I took strength from you all and soldiered on.
I must admit I'm a little apprehensive about night time as that's when it hits me the most but I feel a different person to yesterday so fingers crossed.
It's 5.20pm here and I'm about to be served dinner. I might wash some smalls and put on a movie....another day ticked off the list and another day closer to home.
I cannot tell you how grateful I am for your prayers and thoughts today...Today was SO different to yesterday....let's hope tonight it nice and calm before the head shave (I think) tomorrow...
For me, Day 3 Chemo was N.A.S.T.Y. I was awake most of the night with nausea, stomach cramps, bloatedness, (pee stops), etc. The nurse on duty (Olga) took beautiful care of me but every time I had something for the pain, it would only return in about 1.5 hours so was just bleaugh...really crap.
But today heralded the FINAL day of Chemo for me. 1 day....c'mon...we can do a day.
Thanks to all your prayers, wine drinking, support etc...today (so far) has been absolutely fine. I got up, got dressed, ate all my food, chatted with the fellow patients (now all out of ISO) both in the morning and this afternoon and so on.
Be buggered if I was go to let it throw me around like it did yesterday.
I didn't venture outside (which I should have because it's a lovely 'Indian summer' here at the moment), but the window was open in the lounge and that was lovely (small things)!!
Dr F came in and checked on me this morning and I was quite teary from the night before but he's so reassuring...'1 day. You are doing such a good job. Tomorrow you rest. And then NEW LIFE."
He's very calming and I took strength from you all and soldiered on.
I must admit I'm a little apprehensive about night time as that's when it hits me the most but I feel a different person to yesterday so fingers crossed.
It's 5.20pm here and I'm about to be served dinner. I might wash some smalls and put on a movie....another day ticked off the list and another day closer to home.
I cannot tell you how grateful I am for your prayers and thoughts today...Today was SO different to yesterday....let's hope tonight it nice and calm before the head shave (I think) tomorrow...
Saturday 19 September 2015
DAY 14 - DAY 3 CHEMO
WHAT will today bring..... I'm already apprehensive about feeling crap but the girls here tell me each day can be totally different....so let's see...
I had a horrible night really. After dinner I felt crap again so was in bed by 8pm. By about 2am I was awake feeling nauseous and bloated and just bleugh. I rode it out til morning though and was hooked up again at 10am sharp.
I have no appetite and you can probably tell my 'spark' is a little diluted...but I just feel SO tired.
So the day has been spent lying on the bed ... pretty much all day long!!!! So unproductive but I couldn't muscle the energy to do much else!!
The other girls here assure me this is short term and hey - 4 days of crap for a life without MS....no problems.
I had a beautiful chat with Piper today and she sent me a prayer and pictures so I felt HEAPS better (again quite teary though) about that. Her, Andy, my Mum and Dad and one of my sister's and her family are enjoying a day down the beach....nice.
AND....On the upside....1 day of Chemo to go!! Then a day's rest (with a head shave me thinks) .... then TRANSPLANT DAY!
1 day to go....we got this.
I had a horrible night really. After dinner I felt crap again so was in bed by 8pm. By about 2am I was awake feeling nauseous and bloated and just bleugh. I rode it out til morning though and was hooked up again at 10am sharp.
I have no appetite and you can probably tell my 'spark' is a little diluted...but I just feel SO tired.
So the day has been spent lying on the bed ... pretty much all day long!!!! So unproductive but I couldn't muscle the energy to do much else!!
The other girls here assure me this is short term and hey - 4 days of crap for a life without MS....no problems.
I had a beautiful chat with Piper today and she sent me a prayer and pictures so I felt HEAPS better (again quite teary though) about that. Her, Andy, my Mum and Dad and one of my sister's and her family are enjoying a day down the beach....nice.
AND....On the upside....1 day of Chemo to go!! Then a day's rest (with a head shave me thinks) .... then TRANSPLANT DAY!
1 day to go....we got this.
Friday 18 September 2015
DAY 13 - DAY 2 CHEMO
Before I begin....I feel it's necessary to paint a picture here....as I type this I feel good. Normal. All is well in the land of....well, Wonka me thinks. It has become apparent to me over past 2 days that maybe...MAYBE....I am morphing into Violet Beuregarde from Willy Wonka. She's the one that chews gums and swells into a lovely blueberry ball !!
I knew this could be on the cards, so it wasn't surprising...and yet it is! My ankles, as previously mentioned, continue to be swollen to about the same size as my knees! I sleep with them raised so by morning they're down a bit but, damn it if they don't come back with a vengeance around 11am!
Today I've noticed that my FACE is now joining ranks. I remember as a kid that I was called moonface...I think because of my shock of white hair cut in a bowl cut (thanks Mum) around a naturally round face...and that persona has taken hold again....
If I'm honest I would say it doesn't suit me (anyone that knows me, knows I'm all about being lean)...but looking for the positive....my wrinkles are disappearing with each puff of bloatedness (word?)...so....keeping the glass 1/2 full...that's a good thing! :)
I tell ya - the steroid bloat; no fake nails; about to lose my hair; no make up; and I lose my contacts.....this ain't for the faint hearted people!! At least you all know I'm glowing on the inside where all the good work is happening!! MS is only days away from being eradicated! How cool is that!
Faith, family, friendships, community, support, love.....that'll make me pretty...right....RIGHT......was that a tumbleweed..... :)
So Day 2 of Chemo is DONE. I must admit - I felt CRAP afterwards. Headachy and nauseous. Not nice. BUT 1/2 way with Chemo - 2 down - 2 to go ...so you gotta be happy with that! And the nurses are quick with medication once you speak up so the lesson here is ...don't try and tough it out.
I've never pee'd so much with all the fluids they run through you. I was up every 2 hours and all throughout the day....doesn't help with a good night's sleep!
I rang Andy and Piper (too late) and she wouldn't talk (too tired) so I ended up quite teary with that phone call. My own fault - I should have rung earlier but was flat out on the bed! Doh! The difference between being this side and that side of the phone....
One of the Carer's has just bought me Chicken Chips - so - as with a 'usual' hangover ... I feel so much better eating a bit of fat and grease!!! Bliss!!
2 of the Aussie girls that were in isolation have been allowed out today so it's been GREAT chin-wagging with them again!! Certainly brings some light to an otherwise quiet day!!
Well ... grubs up so I guess that's it for today.....Russia HSCT HQ out...
I knew this could be on the cards, so it wasn't surprising...and yet it is! My ankles, as previously mentioned, continue to be swollen to about the same size as my knees! I sleep with them raised so by morning they're down a bit but, damn it if they don't come back with a vengeance around 11am!
Today I've noticed that my FACE is now joining ranks. I remember as a kid that I was called moonface...I think because of my shock of white hair cut in a bowl cut (thanks Mum) around a naturally round face...and that persona has taken hold again....
If I'm honest I would say it doesn't suit me (anyone that knows me, knows I'm all about being lean)...but looking for the positive....my wrinkles are disappearing with each puff of bloatedness (word?)...so....keeping the glass 1/2 full...that's a good thing! :)
I tell ya - the steroid bloat; no fake nails; about to lose my hair; no make up; and I lose my contacts.....this ain't for the faint hearted people!! At least you all know I'm glowing on the inside where all the good work is happening!! MS is only days away from being eradicated! How cool is that!
Faith, family, friendships, community, support, love.....that'll make me pretty...right....RIGHT......was that a tumbleweed..... :)
So Day 2 of Chemo is DONE. I must admit - I felt CRAP afterwards. Headachy and nauseous. Not nice. BUT 1/2 way with Chemo - 2 down - 2 to go ...so you gotta be happy with that! And the nurses are quick with medication once you speak up so the lesson here is ...don't try and tough it out.
I've never pee'd so much with all the fluids they run through you. I was up every 2 hours and all throughout the day....doesn't help with a good night's sleep!
I rang Andy and Piper (too late) and she wouldn't talk (too tired) so I ended up quite teary with that phone call. My own fault - I should have rung earlier but was flat out on the bed! Doh! The difference between being this side and that side of the phone....
One of the Carer's has just bought me Chicken Chips - so - as with a 'usual' hangover ... I feel so much better eating a bit of fat and grease!!! Bliss!!
2 of the Aussie girls that were in isolation have been allowed out today so it's been GREAT chin-wagging with them again!! Certainly brings some light to an otherwise quiet day!!
Well ... grubs up so I guess that's it for today.....Russia HSCT HQ out...
Thursday 17 September 2015
DAY 12 - CHEMO BEGINS
Again ... you would think an event such as this might attract a bit of fanfare but no...all in a day's work here at Russia HSCT HQ! Everyone very calm and efficient as always.
I must admit, I haven't really been apprehensive about this part of the process ... as it doesn't involve sticking needles half way down my body...and was virtually 'reading over it' on my daily schedule! Actually - in all honesty - nothing has got me truly worried at all....forums and research are wonderful things (even this morning I watched a video of a fellow patient having his transplant so I even know what that looks like)!
Anyway..
With thanks to Olga who gave me an injection of pain killers last night, I slept surprisingly well and woke with minimal pain in my neck.
Dr F was first on the scene giving me an outline of the day and what to expect from the Chemo. Everything in detail...love it. At about 11am Valva came in with the chemo and hooked me up and that was it. It took about an hour or so and then, job done.
Anastasia was here with me at the finish of the chemo and she explained tablets, drinks, etc for me.
I feel SOOOOO lethargic but other than that, no complaints. I've had something to eat and drink and I'm trying to rouse myself out of bed...I don't feel nauseous but I'm definitely 'fuzzy'....so trying to walk out to the lounge with my computer and a drink does not seem wise right at this minute!
Just called home but Pipes could barely get to the phone she was so busy with Mum and Dad's dog...sigh....
Will wait for lunch then venture out to the lounge for a change of scenery....
No picture today but rest assured I'm still smiling! :) Same process for the next 3 days ... gearing up for TRANSPLANT DAY....aka NO MORE MS DAY!!!!
Ugh... so TIRED! Surely it's close to 8.30pm??!! :)
I must admit, I haven't really been apprehensive about this part of the process ... as it doesn't involve sticking needles half way down my body...and was virtually 'reading over it' on my daily schedule! Actually - in all honesty - nothing has got me truly worried at all....forums and research are wonderful things (even this morning I watched a video of a fellow patient having his transplant so I even know what that looks like)!
Anyway..
With thanks to Olga who gave me an injection of pain killers last night, I slept surprisingly well and woke with minimal pain in my neck.
Dr F was first on the scene giving me an outline of the day and what to expect from the Chemo. Everything in detail...love it. At about 11am Valva came in with the chemo and hooked me up and that was it. It took about an hour or so and then, job done.
Anastasia was here with me at the finish of the chemo and she explained tablets, drinks, etc for me.
I feel SOOOOO lethargic but other than that, no complaints. I've had something to eat and drink and I'm trying to rouse myself out of bed...I don't feel nauseous but I'm definitely 'fuzzy'....so trying to walk out to the lounge with my computer and a drink does not seem wise right at this minute!
Just called home but Pipes could barely get to the phone she was so busy with Mum and Dad's dog...sigh....
Will wait for lunch then venture out to the lounge for a change of scenery....
No picture today but rest assured I'm still smiling! :) Same process for the next 3 days ... gearing up for TRANSPLANT DAY....aka NO MORE MS DAY!!!!
Ugh... so TIRED! Surely it's close to 8.30pm??!! :)
Wednesday 16 September 2015
DAY 11 - NEXT LINE IN....
Well - after a night without anything sticking out of my neck...a slept a little better.
My feet have swollen up to be as fat as my knees....I believe 'cankles' are all the rage in Russia at this time of year. I'm pretty sure most of the others have experienced the same (thanks to the steroids). I never experienced this in pregnancy and heck....it's neither attractive nor comfortable! Not even hot pink nail polish is helping....what's a girl to do.
I enjoyed a night without the CVC (thanks Lynne!) but then today I have had the next line inserted into my neck...this one for the chemo. It is a thinner line but to me....is hurting more. I think the couple of stitches they popped in might be pulling. Perhaps he saw my drooping skin and thought he'd help me out....bless.
I'm assured I won't even feel in a day or 2 but for now it's a tad annoying....but fine. No complaints.
Tomorrow heralds the start of 4 days of Chemo. I don't really know how I feel about this. Others have all had different experiences and on different days. I have been assured that as soon as you say something is amiss (eg nauseous) they medicate you and you're fine. I believe fatigue is the big, common 'complaint'.
I feel like (so far) I am coping well. Minimal tears, days filled with mindless 'jobs' for myself; afternoon chats. I never really had any fear about coming here (after initially watching Kristy Cruise on 60 Minutes and then following a multitude of others complete the same, remarkable journey on a forum) I feel I researched pretty thoroughly...and I can confirm - if you are reading this and thinking about coming...CANNOT RECOMMEND HIGHLY ENOUGH.
I'm here by myself and feel safe and supported (mind you, other carers, patients, FaceTime etc have been invaluable beyond words)!
Dr F has been here EVERYDAY since I arrived. He explains every stop of every procedure in minute detail and ensures that I understand. He has a true relationship with each of us. He works with SUCH kindness and love. He is exceptional. We went through all the tests (again, in fine detail) and everything he does, he explains. Anastasia is exactly the same. And today Nicolai was the same again...step by step of what they are doing so nothing is a shock.
I just adore the staff. Dr F, Anastasia, Nicolai, Olga, Eirena, Valva (?), Sventlana....don't you love the names!! They are all incredible and so invested in each and everyone of us.
Today see's another patient leave. "Bill" our wonderful food provider will be taking his son home to America. They (again) were absolutely delightful and another wonderful part of my own journey. Best wishes guys...enjoy MS-free life!
Can you believe it...in about 1 weeks I will no longer have MS. Pretty freaking awesome hey! MIND BLOWN!!!! * Insert happy dance here * !!!! Thank you to everyone that got me here. THANK YOU! THANK YOU! THANK YOU!!
My feet have swollen up to be as fat as my knees....I believe 'cankles' are all the rage in Russia at this time of year. I'm pretty sure most of the others have experienced the same (thanks to the steroids). I never experienced this in pregnancy and heck....it's neither attractive nor comfortable! Not even hot pink nail polish is helping....what's a girl to do.
I enjoyed a night without the CVC (thanks Lynne!) but then today I have had the next line inserted into my neck...this one for the chemo. It is a thinner line but to me....is hurting more. I think the couple of stitches they popped in might be pulling. Perhaps he saw my drooping skin and thought he'd help me out....bless.
I'm assured I won't even feel in a day or 2 but for now it's a tad annoying....but fine. No complaints.
Tomorrow heralds the start of 4 days of Chemo. I don't really know how I feel about this. Others have all had different experiences and on different days. I have been assured that as soon as you say something is amiss (eg nauseous) they medicate you and you're fine. I believe fatigue is the big, common 'complaint'.
I feel like (so far) I am coping well. Minimal tears, days filled with mindless 'jobs' for myself; afternoon chats. I never really had any fear about coming here (after initially watching Kristy Cruise on 60 Minutes and then following a multitude of others complete the same, remarkable journey on a forum) I feel I researched pretty thoroughly...and I can confirm - if you are reading this and thinking about coming...CANNOT RECOMMEND HIGHLY ENOUGH.
I'm here by myself and feel safe and supported (mind you, other carers, patients, FaceTime etc have been invaluable beyond words)!
Dr F has been here EVERYDAY since I arrived. He explains every stop of every procedure in minute detail and ensures that I understand. He has a true relationship with each of us. He works with SUCH kindness and love. He is exceptional. We went through all the tests (again, in fine detail) and everything he does, he explains. Anastasia is exactly the same. And today Nicolai was the same again...step by step of what they are doing so nothing is a shock.
I just adore the staff. Dr F, Anastasia, Nicolai, Olga, Eirena, Valva (?), Sventlana....don't you love the names!! They are all incredible and so invested in each and everyone of us.
Today see's another patient leave. "Bill" our wonderful food provider will be taking his son home to America. They (again) were absolutely delightful and another wonderful part of my own journey. Best wishes guys...enjoy MS-free life!
Can you believe it...in about 1 weeks I will no longer have MS. Pretty freaking awesome hey! MIND BLOWN!!!! * Insert happy dance here * !!!! Thank you to everyone that got me here. THANK YOU! THANK YOU! THANK YOU!!
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