Today started well, I finally managed a bit of a sleep in… which is so hard with the time difference and the sun rising at 4am. I was able to skype the kids who were actually happy to talk to me or at least stay looking at the screen for more than 5 mins. They are having the weekend with their cousins and seemed very happy and content. Bianca has her Kaylee and Dominic his Tarryn and poor uncle Grant and Aunty Dani might get some attention in there hehe, at least my mind is at ease knowing they are having a good time.

Dr F did his rounds and seemed all happy with everything, the first lot of stimulation shots went well, just like a flu jab pain and then its back to sleep. Cant set an alarm tho as they were in before the alarm went, but at least they wake you up first. The steriods were put through and I finally got to have a decent phone conversation with my mum and dad without the kids in the background. Then it was time to head out and see some of Moscow. As we started walking I had some tightness or banding or pain right around my chest and ribs, but it faded once I sat on the tram. I wasn’t sure if this was because I slept funny or from the stimulation shots and perhaps bone pain.

We caught the tram 1 stop before there was a car accident blocking the track so we had to get off and walk, we asked a lovely lady how far it was to the metro (subway) and she walked with us the whole way, speaking some English and warning us to watch for pic pocketers etc in town and on the subway. She even came down to show us where to buy tickets and how to get on and come back, then she was going to have cake with her friend. The subway is fantastic, a train every minute or two and the stations were beautiful, not that we saw many as we only went 5 stops but it is a very very efficient service and not too hard to manage.

Once we got off we were in the heart of moscow, red square, the Kremlin and St Basils Cathedral. It was 10° today and very cold when the wind blew! It was gorgeous when it was still. Arriving from the airport monday our driver explained that there was a parade in the square and they were still taking all of that down so the walls of the buldings were covered up but even so Bianca was right ‘Russia is Beautiful!’ The buildings were amazing with all the intricate detailing. We went inside St Basil’s Cathedral which was very interesting, we expected it to be a well big open space but it is lots and lots and lots of little rooms and filled with stories of other churches and their artifacts. I will put some pics here, the rest I will put in an album on facebook eventually.

From here we went through a shopping mall which was all top brand and designer, every shop has a security guard and we decided these weren’t  our type of shops so we had an ice cream and a look at all the beautiful art displays and went through this amazing market/shop that had EVERYTHING! It just went on and on and on, things that are expensive in adel are cheap here and vice versa.

How good does that Salmon look, it was only $6 per kilo. We bought some grilled pieces and it was amazing. Walking through the next allys we came across a nice italian restaurant and decided to have dinner there before heading back to the hospital. We could have gone to Jamies Italian but decided to give this little place next to the beer restaurant a go and we were glad we did. Joe even said the mellazanee was better than his mums 😮 and that is hard to beat!

We headed back to the hospital and I was having the chest tightening again so I told the nurse and she checked my blood pressure which was fine, spoke with Dr F and I had a jab in the butt… dont know what it was but when I talk to Dr F tomorrow I will find out. What ever it was it sent me to sleep as I didn’t finish this or wake up for the 11pm shot!

Besides the ecg and eye test I had yesterday, today was a day of test after test. It started with a urine sample at 7am, followed by the wonderful swaps of your mouth (easy), nose (weird) and your buttocks (uncomfortable) to make sure there was no MRSA. Then was a blood test, a full blood chemistry is performed and they take quite a few vials but the nurse is lovely and it doesnt take long. All this time I am fasting, and was told not to shower yet. I am now sitting and waiting and Joe comes to the hospital and Dr F comes in and checks on me… I can shower, all good. Then Anastasia comes and says sorry for keeping you, lets go… so upstairs I have a chest xray for my lungs, a sinus xray, then an ultrasound of my kidneys, gallbladder, stomach, uterus and overies.

I am then allowed to come and eat some breakfast (even tho its 11.30) it was baked egg whites today Yum. Whilst back in the room I said to Joe, she put the dopler in and straight away asked if I has a cesarean, to which he responded ‘don’t you think she would have noticed your scar?’ Well Derr! I guess so hehehe. Next tests are a beathing test, for lung capacity, which I sucked at, and a leg vein ultrasound to check for dvt’s etc. I then had a canualla put in for the MRI contrast and boy did I bleed but was all cleaned up and ok. So off for the longest MRI I think I have ever had and that concluded todays testing.

It got to 5pm and Anastasia gave me permission to go back to the hotel and sleep there to return in the am. This was wonderful, I got to experience the tram and Joe and I had a lovely dinner together in the hotel restaurant with an interesting conversation with the waitress on how to get Joes lamb rack cooked rare… they didn’t understand but we worked something out eventually and went with medium instead. My stroganoff was amazing, Joes lamb was well lets say to overcooked for him hehe.

We then crashed it as we are struggling with the time zone changes. 7.30pm here is 2am Adelaide time so early nights then mean early mornings, hopefully we will adjust soon.

At 10am the taxi arrived to take us to the hospital, we saw an accident on the tram line and in 10 minutes we were here, waiting in the little hut for Anastasia to come. We are noticing everyone is showing their passports and realised we left ours in the hotel safe! Doh, how could we be so silly. All is fine tho, Anastasia gets us through though the guard isn’t impressed and we head up to level 2 of the hematology unit. Besides ever so bubbly Anastasia, the next person we meet is the wonderful Dr Fedorenko who meets every image I had created of him in my mind. I have a private twin room for now and will probably get a room mate next week. Joe and I hang in my room and get a brief introduction and run down of the day and then are left to ourselves.

Around 12ish I was given a warm fruit syrup type of drink, which tasted ok and then by 2pm I was wondering if it was lunch or if they had forgotten me. I had advised them I didnt eat seafood, so after I had a bowl of soup placed down and then a bowl offered to Joe and he declined it, it was taken back to the trolley. I was sooo confused, but realised it was a fish soup. Then it came…. the tongue! My first meal and it was here. The potato and bread was nice but the tongue was everything I had imagined. GROSS! After I put it in paper towel to cover it up, it went back on the plate.

In this time I had my ecg or ekg as the call it here, the first of my many tests. We were lucky enough to be able to join the new life celebration for Paul and Renathe, was very nice and inspiring, happy birthday to you both. We also got to meet the other patients up on level 3 who are all awesome and doing well. We had to leave early for an eye test, using the impressive undergound tunnels to get from building to building.

Then that was that, the day was over, I had a porridge like meal for dinner with a nice cottage cheese cheese cake.

After setting up some of my things I opened Patricia and Terry’s present and draw the first blessing and it was perfect for today.

Monday night Adelaide time we, Joseph and myself, started our journey to Moscow,  Russia! This was one of the hardest things I have ever had to do as Bianca sobbed uncontrollably and Dominic was a true lil man and got sad, wiping both his eyes with both his hands at the same time but there were no tears as such, and was too cute! We gave them a little parting gift and tbh the BIG GRAVE DIGGER worked for Dom but Bianca knew this was it. We have been very open and honest with them and they have been involved with all of it so they knew it was coming but it didnt make it any easier.

Once we were on the plane it was go time, I was focusing on what was ahead and we soon arrived in Dubai. We had a very long 12 hours in Dubai airport. We ate, looked at every shop,  managed to have a sleep and then we had a back and foot massage before getting on our flight To DME, Moscow. We changed our seats to the back of the plane where we each had the 4 middle seats to ourselves and could have a lie down and a sleep which was fantastic then but means I have been wide awake since 6am here!

Arriving in a different country for the first time is nerve-wracking but when everything is in another language it is hard! When we got off the plane I nearly thought I was going to have to continue by myself… I had been cleared by immigration and spent a good 5-7 minutes anxiously waiting to see Joe emerge from the gates… All ended up well but he was questioned and discussed with supervisors and was thinking he wasnt going to be allowed in!!! But he was and then we spent a good 10 mins filling in customs forms which werent needed and we found our driver Alexander (Alexi) waiting for us and the Russian Dash Cam videos certainly are a true indidcation of the traffic here. We arrived at the Best Western Vega hotel (pic is the view from our room) around midnight Moscow time and here we are wednesday morning now and after breakfast I will be admitted to the hospital AA Maximov, Piragov a place i will call home for the next 29 days.

Last Tuesday 13 January I had my 16th and final tysabri infusion. – a Disease Modifying Drug (DMD) YAY!!

Every 4 weeks since starting this drug in Nov 2013 I would go for a couple of hours and have this drug put in through IV. It was actually quite relaxing not being able to move, forced to sit down, being kid free and I even got lunch somedays or at least some yummy snacks like ice-cream!

For my final treatment I brought my family in to see how it all happens and meet the lovely staff at the RAH who couldnt have been more welcoming and happy to give my babies some ice-cream! Poor daddy missed out tho hehe. The staff all want me to come back and report how I am after I return. With any luck I will be going back to show them I am free of MS and doing as well as all the other warriors who have returned and are even seeing some improvements!

Now I have a treatment free 3 month washout period to make sure its all out of my system. This brings risks of a relapse, but it is a risk I am willing to take and 3 months will fly by. After my HSCT I will (fingers crossed) no longer need to have any further DMD’s as my MS will be stopped, halted, no longer, a thing of the past!

I am so pleased all went well on this drug and none of the side affects affected me. I didn’t have any more relapses on tysabri and felt it was the best thing for me at the time… BUT only because I didn’t know about HSCT!! I am so very relieved to be off it as this means its getting close to leaping for my better life now YAY!!!

There are always people who are worse of than you and whilst I know and believe this, and even tho we have had a fab weekend, I find myself sitting here on the lounge watching tv, feeling alone and sad tonight.

Joseph and I would normally watch the recruit together and since he is working away I haven’t watched the last couple of weeks as I’ve been waiting for him. I found out tonight that he has fox 8 up in moomba so he isn’t behind anymore and I need to catch up. Can’t wait for him to come home Friday – it’s been a long 2 and a half weeks so far! It is not ideal with me not having the capacity to do everything I could pre MS and him missing out, but he has taken the job working away as it was a long 7 weeks between pays and the oil and gas industry appears to hold a better future than manufacturing especially in SA.

If it’s hard for me here in my environment, doing my normal tasks with great support around me, I can’t begin to think about the sacrifices Joseph is making for us and how he must be feeling. He does a lot to help me with Bianca and Dominic and I probably don’t give him the credit he deserves often enough and I am noticing the difference! With my hubby not here I am left to not only deal with house duties but also look after my kidlets and myself. It’s not easy and I take my hat off to single parents. I need a hug and my poor babies are missing their daddy lots and lots.

Adding to my sadness… I was looking at FB tonight and I am very happy for the Elite Academy of Dance’s over 30’s who reunited this year and won their entry in the comps tonight. However I am also feeling very sad that due to my MS I will never be able to a part of that. I gave up dancing the year after I was first diagnosed as I felt my balance, strength and coordination was compromised by my right leg. I miss the friendship and fun dancing at EAD and realise that all good things must come to an end but it doesn’t make it any easier when if a year ago I didn’t have such a massive relapse I might have been able to perform again with them. Well done ladies!

Along with thinking about why I gave up dance, I have been upset (again) that I also was not able to play hockey this year as I was tallying the votes for the best and fairest this weekend. Whilst I have been part of the club, socially, on the committee and managing the ladies team, playing hockey was a big part of who I was. It’s been nearly a year since my last attack which has left me unable to run or even walk without a noticeable limp and I have resorted to the fact that this is as good as I am going to recover. It’s not the end of the world and it definitely could be worse but as I near my 32nd birthday I am definitely heartbroken by the way in which I HAD to give up my passion when really I should have had a lot more years left in me!

This treatment I will undertake in Russia will hopefully halt me here, where I am at today and whilst the recovery will be long and hard. I pray that this is as bad as I will get before I have to give up anything else.

I will hop into my empty bed now and will wake up feeling ok and will get on with my busy week despite my limitations from this awful disease. Sometimes you just need a good cry!

Wow, what a crazy time! Yesterday my husband Joseph, was made redundant. Saving for Russia is one thing but surviving and paying the mortgage is another and we are now without our main income. I am very very hopeful that he will get something else soon as he is a hard worker and very good at what he does. We knew there was a possibility his company could close down, but it would have been nice to have a planned leaving date so BAM he was not unemployed effective immediate!

Organising Russia is in full swing and I also wanted to mention I have great support from my online facebook forums and other blogs from the 80+ Aussies or others world wide who have been or are booked for the same treatment in Moscow or elsewhere. I am so very thankful that they are willing to share their knowledge, ask questions I might not have thought of, support each other and update us on their progress. I am definitely not feeling alone in all of this and they are putting my mind at ease with the process and treatment.

At the end of the day, some you win, some you don’t. So I’m glad that I’m here with some friends that I know. Always there with a smile, saying you’re not alone Saying la la la la Que Sera.

Yesterday is history, you gotta get through it. Tomorrow is a mystery so let’s just do it. And even when the rain falls you and I, will stand tall. No matter what you go through, I’ll never leave you. So you gotta be strong, live by the words of the song. Together is where we belong, never stop dreaming, keep holdin’ on.

When it’s been a long day, had enough, givin’ up, it ain’t ok. We don’t care what the world say, we spread love it’s the only way. We keep falling but the world keeps spinning and I might stop winning, just as long as I got you by my side. We keep falling but the world keeps spinning and I might stop winning, but I know that we’re gonna be alright.

At the end of the day some you win, some you don’t so I’m glad that I’m here with some friends that I know. Always there with a smile, saying you’re not alone. Saying la la la la Que Sera

Today I have changed my ringtone to Que Sera by Justice Crew. I have written out the lyrics above as part of this post for you to read how fitting it’s meaning is. This song has always given me a strong sense of my situation, going to Russia but today it also works for Joseph’s job loss. I hope you turn it up when you hear it and think happy thoughts like me :0)

I have been a little quiet lately, as before I continued full steam ahead I needed to be sure Russia was where I was headed. Back in April I saw my neurologist who requested some more tests to ensure I definitely didn’t meet the criteria to have the treatment here in Australia. I had another MRI and this report showed some changes since the last one back in Oct 2013.  Some lesions are bigger and some smaller and the fortunately the large tumeffective lesion had shrunk however it has now left what they call a black hole in my brain – a cavity! This is where there has been repeated inflammation, leading to complete destruction of both meylin and the axons themselves. These areas strongly correspond to disability and therefore I now feel I have reached my maximum recovery (about 80%) from this last attack. The MRI did not show any enhancement on the lesions therefore I would not meet St Vincent’s Hospital trial criteria.

Another test he ordered was a John Cunningham Virus (JCV) antibody blood test. This came back with a changed result from being negative back in Nov 2013 to now JCV positive. Far out that is very scary information with the risks of the medication I am currently on (tysabri) now higher because of this result. The risks increase with each treatment and especially after the 12 month mark. I need to be careful I don’t develop PML which can be fatal. I am so pleased that I will having my 12th infusion in October and will come of this nasty drug to have my HSCT phew!!!

So next my neurologist wanted to see if speaking to Sydney would make any difference. Of course I knew I didn’t meet the criteria but I was happy to let him “TRY” to help me get in and am very fortunate to have a neurologist who is willing to help. I was right hehe, they wont accept me into the trial. I would have to have failed multiple drugs and that would mean time and waiting and seeing what would happen. Well waiting is something I don’t want to do and so the Road to Russia it is!

Please keep your eyes on this site and/or my facebook page for the latest information regarding my journey and I apologise in advance for taking up your time but we are about to get busy as I only have 7 months to get this happening!