Rally Chat RETROFESTIVAL NEWBURY - Event for Cassie
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OP
OP
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For those that do not have a facebook account you should be able to follow Cassie's progress here
Cassie’s just giving page is https://www.facebook.com/CureCassieHSCT/ and this is her fund collecting page https://www.leetchi.com/c/nonprofit-charity-club-cassie-page
She flew over to Moscow yesterday 4th September and is now in Aa Maximov Hospital for Hsct (Hematopoietic stem cell transplantation) yes I had to look it up !! According to her posts she is feeling really relaxed and the people are nice - so now she is having assessments to prove suitability for the treatment.
As I see updates I will post more
Cassie’s just giving page is https://www.facebook.com/CureCassieHSCT/ and this is her fund collecting page https://www.leetchi.com/c/nonprofit-charity-club-cassie-page
She flew over to Moscow yesterday 4th September and is now in Aa Maximov Hospital for Hsct (Hematopoietic stem cell transplantation) yes I had to look it up !! According to her posts she is feeling really relaxed and the people are nice - so now she is having assessments to prove suitability for the treatment.
As I see updates I will post more
dryad
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good to hear that cassie is now in russia and hopefully treatment can start to knock that horrible disease away, am sure that everyone is wishing the same for her..
OP
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OK Folks we have a live update from Cassie now she has established WIFI - I will keep the info coming.
Hello everyone from a rainy Moscow!
Apologies for the lack of updates, laptop issues and phone being awkward to blame, but I see lovely Bill has updated people, thank you @Landy lover!
News in brief:
Left Weymouth on Saturday evening, Adi dropped me at my mum's house and it all become very real all of a sudden, it was a tearful goodbye and the tears didn't stop for quite a while, I think it was a mixture of sadness of leaving for so long coupled with quite a large amount of fear about what was to come, even though I've spent nearly a year thoroughly researching the treatment and have always been very positive and calm about it, it kind of hit me hard when the day came to leave my darling Adi and the doggies and my amazing life in Weymouth for such a long time!
Anyway, got up at 6am on Sunday to go to Heathrow, all went well and all to time, boarded the flight with no problems and again no problems on the 4 hour flight apart from lack of choice for food - cheese and onion sandwich when I can't eat raw onions
Driver was waiting at the airport as promised, sadly it took over 2 hours to complete the 26 miles to the hotel due to totally unusual and unprecedented levels of traffic
Hotel messed up our booking so had to share a double room (1 bed) with mum, but it wasn't so bad
Collected the next day at 12 to go to the hospital and meet the team, it felt so good to finally be on my way, I was still a little bit emotional but still eager to start testing
Met the amazing Dr Fedorenko and his very helpful assistant Anastasia and settled into my room and had my first hospital meal of plain pasta, unidentifiable soup and beetroot and bread whilst waiting for my ECG
Once that was complete I was free to go back to the hotel!
We had a little rest then wandered around the area around the hotel and picked up a few supplies
Dinner was an all you can eat buffet based on beef, some 'interesting' dishes but not unpleasant!
I then returned to the hospital as testing was due to resume very early the next morning so I went to bed quite early!
More later, need to grab dinner now (it's 7.40pm here!) Typing this on my phone takes ages!
Much love to you all!
Cassie
Hello everyone from a rainy Moscow!
Apologies for the lack of updates, laptop issues and phone being awkward to blame, but I see lovely Bill has updated people, thank you @Landy lover!
News in brief:
Left Weymouth on Saturday evening, Adi dropped me at my mum's house and it all become very real all of a sudden, it was a tearful goodbye and the tears didn't stop for quite a while, I think it was a mixture of sadness of leaving for so long coupled with quite a large amount of fear about what was to come, even though I've spent nearly a year thoroughly researching the treatment and have always been very positive and calm about it, it kind of hit me hard when the day came to leave my darling Adi and the doggies and my amazing life in Weymouth for such a long time!
Anyway, got up at 6am on Sunday to go to Heathrow, all went well and all to time, boarded the flight with no problems and again no problems on the 4 hour flight apart from lack of choice for food - cheese and onion sandwich when I can't eat raw onions
Driver was waiting at the airport as promised, sadly it took over 2 hours to complete the 26 miles to the hotel due to totally unusual and unprecedented levels of traffic
Hotel messed up our booking so had to share a double room (1 bed) with mum, but it wasn't so bad
Collected the next day at 12 to go to the hospital and meet the team, it felt so good to finally be on my way, I was still a little bit emotional but still eager to start testing
Met the amazing Dr Fedorenko and his very helpful assistant Anastasia and settled into my room and had my first hospital meal of plain pasta, unidentifiable soup and beetroot and bread whilst waiting for my ECG
Once that was complete I was free to go back to the hotel!
We had a little rest then wandered around the area around the hotel and picked up a few supplies
Dinner was an all you can eat buffet based on beef, some 'interesting' dishes but not unpleasant!
I then returned to the hospital as testing was due to resume very early the next morning so I went to bed quite early!
More later, need to grab dinner now (it's 7.40pm here!) Typing this on my phone takes ages!
Much love to you all!
Cassie
OP
OP
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And a bit more update just arrived live from Moscow !!
OK let's do a bit more!
Tuesday morning started with a urine test at 6.15 am then a blood test at 7.30. I also had my nose and cheeks swabbed.
I then had a Spirograph / breathing test
I wasn't allowed to eat or drink as was due to have a gastric ultrasound in the morning too. This unfortunately got delayed as the usual guy was on holiday but finally we ventured down to the basement and through a very long cold war era esque tunnel that went all the way to the other building underground, was really quite cool!
Had the ultrasound of my stomach, kidneys, liver and pelvis then got to go back and eat my cold porridge, bread and cheese (I have a microwave so was able to warm the porridge
)
I think it was then time for my chest and sinus X-ray! It is all merging into one as there were so many tests each in different locations!
I then had an ultrasound of my heart and legs up on the 4th floor mainly surrounded by non English speaking Russians who were polite as far as they could be, I tried as hard as I could with me extremely basic Russian but mainly sat and listened to them chatting away while we all waited
I had another breakfast (you get 2 a day!) which was boiled beef, boiled egg and a couple of boiled apples, this wasn't as bad as it sounded That was 12 noon, the other ultrasound might have actually been after that, I forget
Lunch was at 2pm and I had a kinda tasteless green soup and bread and something else I have forgotten!
Sadly both me and Mum got food poisoning from the hotel buffet the evening before and I started feeling the very negative effects of that late that afternoon no further details required I assure you but we're OK now
I had a catheter / cannula fitted in the afternoon to administer the drug used for MRI contrast but sadly the nurse didn't get it quite right first time (very big OUCH!) but was successful the second time on my left arm, apparently my vein was too wiggly on my right arm for such a big needle :/ )
Mum went back to the hotel as it was getting late (was about 6.30 so starting to get dark and the tram takes about 15 minutes)
I waited and was finally taken to my MRI at about 7.15. They work late here, up until 9.30 at least )
Back in my room just over an hour later still feeling wiped out by the buffet incident so didn't want my dinner - they had actually forgotten to give it to me but delivered it when reminded - fish pie, mash and grated carrot, the perfect smell when you are feeling fragile
Popped that in the fridge and did a bit of colouring in and reading as didn't want to go to sleep too early, wanted to be as tired as possible so I slept as well as I could (it's a bit noisy and the room is bright so every little helps)
Was woken again at 6.15 by a random nurse, I still have no idea what she wanted!
Woke properly just before 9 when 1st breakfast was delivered - porridge, bread and egg I think - couldn't face eating anything so left the porridge and popped the egg in the fridge
2ND breakfast was truly terrible - another chunk of boiled beef but this one was fatty and yuk, I'm usually game for everything but not the time! There were 2 boiled apples too, had a bit of those and gave up, the pot of some kind of creme fraiche / cottage cheese thing also didn't get much eaten out it!
At this point I remembered the fish pie so I heated that up and ate it (it was far nicer than expected) and a bit of the mash. I ate the grated carrot the night before)
12 o'clock comes and I'm called to see the Doctor for my results - I passed with flying colors yippee!!
This means that treatment starts this Friday so I get tomorrow off so we've hired a local driver (well known to the hospital) to take us sightseeing all day, can't wait!
I'll add pictures soon but tired now so off to bed, long day being a tourist tomorrow
PS had dinner in the a la carte restaurant tonight to avoid a repeat of the buffet incident
OK let's do a bit more!
Tuesday morning started with a urine test at 6.15 am
then a blood test at 7.30. I also had my nose and cheeks swabbed.I then had a Spirograph / breathing test
I wasn't allowed to eat or drink as was due to have a gastric ultrasound in the morning too. This unfortunately got delayed as the usual guy was on holiday but finally we ventured down to the basement and through a very long cold war era esque tunnel that went all the way to the other building underground, was really quite cool!
Had the ultrasound of my stomach, kidneys, liver and pelvis then got to go back and eat my cold porridge, bread and cheese (I have a microwave so was able to warm the porridge
)I think it was then time for my chest and sinus X-ray! It is all merging into one as there were so many tests each in different locations!
I then had an ultrasound of my heart and legs up on the 4th floor mainly surrounded by non English speaking Russians who were polite as far as they could be, I tried as hard as I could with me extremely basic Russian but mainly sat and listened to them chatting away while we all waited
I had another breakfast (you get 2 a day!) which was boiled beef, boiled egg and a couple of boiled apples, this wasn't as bad as it sounded
That was 12 noon, the other ultrasound might have actually been after that, I forgetLunch was at 2pm and I had a kinda tasteless green soup and bread and something else I have forgotten!
Sadly both me and Mum got food poisoning from the hotel buffet the evening before and I started feeling the very negative effects of that late that afternoon
no further details required I assure you but we're OK now I had a catheter / cannula fitted in the afternoon to administer the drug used for MRI contrast but sadly the nurse didn't get it quite right first time (very big OUCH!) but was successful the second time on my left arm, apparently my vein was too wiggly on my right arm for such a big needle :/ )
Mum went back to the hotel as it was getting late (was about 6.30 so starting to get dark and the tram takes about 15 minutes)
I waited and was finally taken to my MRI at about 7.15. They work late here, up until 9.30 at least
)Back in my room just over an hour later still feeling wiped out by the buffet incident so didn't want my dinner - they had actually forgotten to give it to me but delivered it when reminded - fish pie, mash and grated carrot, the perfect smell when you are feeling fragile
Popped that in the fridge and did a bit of colouring in and reading as didn't want to go to sleep too early, wanted to be as tired as possible so I slept as well as I could (it's a bit noisy and the room is bright so every little helps)
Was woken again at 6.15 by a random nurse, I still have no idea what she wanted!
Woke properly just before 9 when 1st breakfast was delivered - porridge, bread and egg I think - couldn't face eating anything so left the porridge and popped the egg in the fridge
2ND breakfast was truly terrible - another chunk of boiled beef but this one was fatty and yuk, I'm usually game for everything but not the time! There were 2 boiled apples too, had a bit of those and gave up, the pot of some kind of creme fraiche / cottage cheese thing also didn't get much eaten out it!
At this point I remembered the fish pie so I heated that up and ate it (it was far nicer than expected) and a bit of the mash. I ate the grated carrot the night before)
12 o'clock comes and I'm called to see the Doctor for my results - I passed with flying colors yippee!!
This means that treatment starts this Friday so I get tomorrow off so we've hired a local driver (well known to the hospital) to take us sightseeing all day, can't wait!
I'll add pictures soon but tired now so off to bed, long day being a tourist tomorrow
PS had dinner in the a la carte restaurant tonight to avoid a repeat of the buffet incident
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Any further news Bill?
OP
OP
Landy lover
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- Jul 11, 2009
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Hi All - been in hospital myself having chemo - check ups and tests so not been on the forums for a few days so here is the next instalment.
Thurs 7th Sept...
More about my meeting with the incredible Dr Fedorenko - he went through all of the results individually - very thorough man and I'm pretty much mid range for all the values which is quite reassuring!
Then it came to my MRI - I haven't had once since 2014 and they only did my brain and brain stem then.
I saw all the pictures in full this time, not just a glimpse on the computer monitor, the Russian ones were put on X-ray films and I could clearly see the white dots which are my lesions caused by the MS (where my immune system has attacked itself) - I didn't think I had that many but it turns out that I have at least 30 in my brain alone.
I am sure I have never had a spinal MRI - turns out I have lesions there too - when you get lesions there you generally see issues with your arms / legs etc which was a bit scary to hear, thank god I'm going to get this treatment to stop progression.
After the meeting with the lovely Dr F as he is fondly known mum and I decided to go back to the hotel. We popped to the shop near the hospital to check it out for supplies (I had popped in earlier but didn't have time to browse as I didn't want to be late for my meeting with the doctor) then got the tram back to the hotel.
We decided to go to the local market and pick up some souvenirs as Weds is the cheapest day as it is a wholesale day, result!
Mainly chilled in the room after that and I caught up on my blog for you guys then had a snooze
Dinner was lovely - roast salmon on a bed of spinach risotto - very healthy too
Bed time then, wanted to be well rested for the full day of sightseeing today as it will be my only chance to do any and I don't want to miss the opportunity!
Photos:
The hotel (there are 4 possibly 5 in the complex, it's huge! And always booked up!)
Broken Link Removed
The Kremlin (palace) just behind the hotel - this is where the market is too, beautiful place!
Broken Link Removed
The tourist bit in the Kremlin tee hee!
Broken Link Removed
From the market looking back to the hotels to show proximity
Broken Link Removed
More later, gotta get ready for the tour!
Friday 8th
I'll write about sightseeing later - I have far more important news!!
ACTUAL TREATMENT HAS STARTED!
Steroid infusion number one done and dusted! Have stem cell stimulation injections at 11pm and 3am next - going to try and sleep through the 3am one
Broken Link Removed
Thurs 7th Sept...
More about my meeting with the incredible Dr Fedorenko - he went through all of the results individually - very thorough man and I'm pretty much mid range for all the values which is quite reassuring!
Then it came to my MRI - I haven't had once since 2014 and they only did my brain and brain stem then.
I saw all the pictures in full this time, not just a glimpse on the computer monitor, the Russian ones were put on X-ray films and I could clearly see the white dots which are my lesions caused by the MS (where my immune system has attacked itself) - I didn't think I had that many but it turns out that I have at least 30 in my brain alone.
I am sure I have never had a spinal MRI - turns out I have lesions there too - when you get lesions there you generally see issues with your arms / legs etc which was a bit scary to hear, thank god I'm going to get this treatment to stop progression.
After the meeting with the lovely Dr F as he is fondly known mum and I decided to go back to the hotel. We popped to the shop near the hospital to check it out for supplies (I had popped in earlier but didn't have time to browse as I didn't want to be late for my meeting with the doctor) then got the tram back to the hotel.
We decided to go to the local market and pick up some souvenirs as Weds is the cheapest day as it is a wholesale day, result!
Mainly chilled in the room after that and I caught up on my blog for you guys then had a snooze
Dinner was lovely - roast salmon on a bed of spinach risotto - very healthy too
Bed time then, wanted to be well rested for the full day of sightseeing today as it will be my only chance to do any and I don't want to miss the opportunity!
Photos:
The hotel (there are 4 possibly 5 in the complex, it's huge! And always booked up!)
Broken Link Removed
The Kremlin (palace) just behind the hotel - this is where the market is too, beautiful place!
Broken Link Removed
The tourist bit in the Kremlin tee hee!
Broken Link Removed
From the market looking back to the hotels to show proximity
Broken Link Removed
More later, gotta get ready for the tour!
Friday 8th
I'll write about sightseeing later - I have far more important news!!
ACTUAL TREATMENT HAS STARTED!
Steroid infusion number one done and dusted! Have stem cell stimulation injections at 11pm and 3am next - going to try and sleep through the 3am one
Broken Link Removed
Wombles
LIFE MEMBER
We have been following Cassie on the RVOC forum & she is doing well so far https://www.rvoc.co.uk/forum/threads/help-cure-cassie-update-from-russia.26819/
Hope her treatment & raising awareness of it helps others too.
https://www.rvoc.co.uk/forum/threads/help-cure-cassie-update-from-russia.26819/Hope her treatment & raising awareness of it helps others too.
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