Lauren's Leap for a Better Life

Another good nights sleep, woke about 6am still feeling very tired and flat but heaps better than yesterday. I was not doing too much today and by the time breaky came, I had an infusion of protective medicines against the chemo and it was time for a little nap again. I had some emails from Bianca’s teacher and this triggers two reactions, I love seeing how she is getting on at school and coping etc, I am so proud of her and therefore want to give her a great big hug, which pulls at the heartstrings and makes me tear up. Bianca also started Auskick this afternoon, she wants to play on AO at half time of the afl so we signed her up, knowing there is a chance they might not get to do it, but she needs the coordination lol. Would have been great to be there but, its a small blip in time and I’ll be home before I know it.

"Amaru was holding the ladder and I was picking the Mandarin and I couldnt get the manderin"

After my nap, I venutured out of my little room and had a chat with James who was pumping out his stemcells and moved to level 3 today, he got 3.1 mil on his first collection so he has a few days off. Lucy, Katie and Monica all were collecting their stemmies too and I believe all are going for the standard round 2 again tomorrow with Rosemary starting her collection then too. It was a busy day for Dr Fedorenko. He is such a nice Dr, doesn’t look frazzled or flat out at all, and takes the time to check how you are at every moment. Joseph said when Renathe was leaving he looked sad. Paul from Melbourne, Renathe and Stian, left today, gone home from Priogov, leaving their MS here. Such an emotional time. Goodluck to you both!!

After lunch and another infusion we went for a walk, it was a truly beautiful day 25° and was lovely just to sit in the sunshine and talk to my mum till I needed to pee.

I was feeling really good so Joseph and I headed out for dinner. We started of just dardling down the road and went into an amazing coat shop, but coats were 30000 rubles which is like 1k so needless to say we kept walking. It was only like 5pm so we decided to jump on the subway and head into red square and check out the underground shopping mall Okhotny Ryad. It was pretty much your standard shops you would find in your centre of town. Nice and classy and not overly cheap. If we were here to shop and I had all day and the money, there are some nice shoes and clothes but we were “just looking!”

We went to a cafe type restaurant inside the mall for dinner. We asked how long the meals take and they said 20-30 minutes and the menu was in english so we ate there. I ordered a salmon steak and Joe thought he got mellazane pollo – which was actually chicken schnitzel with parmagana. We waited as the table next to us had their pizza delivered, then their salad, then their bowls of pasta each and were asking for the desert menu. Murphys law, when you are in a hurry your food doesnt come. We asked if we would be long and it felt like an eternity, it had been 45 minutes. Wr organised to pay the bill. The food finally arrived at 7.56pm and for those who know me and my eating habits will be very impressed to know we were on our way up the escalator at 8.06 in 10 whole minutes!! The meals were again amazing! We couldnt be late getting back to the hospital! We still had to get back on the metro, on a tram or trolly and in to the grounds by 9pm. When we were on the subway it was fine, we felt ok, then everyone had to get off at the stop near the hotel. So we just got off and thankfully not even 2 minutes later the next one came and took us all the way. Then the tram came and we were in the gates at 8.52pm! Now if we were needing to catch puplic transport like that in adelaide… not a chance!!!

Today I just did not want to wake up, I slept till 9 I think and only because thats when they brought my breakfast in. I was totally wiped out, I slept all night and I had fatigue. The I CBF to even roll over or pick up my phone fatigue. My right leg and arm (which is affected from the MS) were aching and weird and I was feeling it today. Eventually I made myself move and ate my breaky, and was hooked up for my final day of chemo therapy! I managed to get the kids at a good time and Dom layed there looking and smiling at me for the first few minutes which was lovely, but then as siblings do they started to annoy one another and they were off playing again.

I finished my insfusion laying down and resting as I was really feeling zapped of all my energy. I am surprised that I didn’t feel anything until now, but I am definitely not complaining. They give you a shot of a blood thinner after the chemo which is leaving some nice marks on my tummy, (sorry not attractive I know) but at least I wasnt reacting to it like Joe did when he was on the thinners he had welts.

I needed to ask for pain killers for kidney pain today, I could feel the chemo going through and it was uncomfortable enough to request some, not excruciating but about a 3 or 4 on the scale of 10. I also felt nauseous with it so some paracetamol I think and a little lie down. It soon passed and lunch was here however I didn’t eat anything as I wasn’t feeling up to it and was a bit green around the gills.

Lucy and David came up for the arvo so I could say goodbye to David as he is off back home tomorrow. When it was time for my 5pm infusion the nurse made me go back in my room to have it, lucky its only a 5 minute thing and I was back out able to say goodbye before dinner. It was a pleasure to meet you David, take care.

Dinner didn’t smell all that great but it tasted ok and I managed to eat it. It was just some vegetable stew thing a bit bland but it hit the spot. I opened a pack of shortbread creams for dessert which are usually my favorites, but they just didnt taste the same. Very disappointing lol. I had the 9pm infusion and it was another early night for me!

Another great nights sleep, I think I am enjoying the bed to myself hehe, however I think the chemo might take it out of you a bit too. I had my dressing checked by the nurse before she left and then I went through the shower before breaky so I could watch the crows and have day 3 of the chemo. There are these things called shower shields that you cover your picc line with when you, you guessed it, have a shower. Today’s was useless although I did actually wash my hair, it was with caution and the hand held nozel still. But my dressing was saturated and I was madly trying to dry it back on, It seemed to work for the most part I just wore a hair net all day to try and keep it from pulling down. Not sure how to make them work properly!

I was hooked up and watching the showdown while Joe was recovering from a BIG night with Renathe’s husband Stian from Norway, watching the footy with David the port supporter from scottland. Got all that? It was a great way to make the time pass but footy at 9.30 in the am and a loss in a showdown meant for a long day ahead and I wasn’t sure how Joe would be when he got here 😩

I skyped Bianca and mum before Joe arrived and didnt realise it was already 7.15pm there so Dominic was already in bed asleep and Bianca was just going to bed. They were buggered after a wonderful weekend with Paul, Kirra and the boys. Thank you for having them and making this easier for us on the otherside of the world and giving the grandies a break. I was so pleased that there were no major dramas and their first ‘non family’ sleepover was a success. Bianca was loving the praise she got for using her manners and she also delighted to tell me that Dominic was only a little bit naughty, holding up a 1cm gap between her thumb and index finger. Its such a relief to not be stressed about the kids here and be able to focus and relax on the treatment. I cant believe the 2nd week is coming to an end already!

Besides needing to empty my bladder every 10 minutes, I had a little bladder discomfort/pain for about 10 minutes but not bad enough to require any attention, a bit of the sweats still and I needed a nap so Joe and I both had a siesta. I was woken at 5pm for the bladder protection and anti nausea infusion and then got dressed to go out for dinner as the mash pototo and fish wasn’t going to cut it.

We decided to eat back at the hotel as we had a few hours til I had to come back for the guards and the 9pm infusion. Everytime I go out I think it will be my last time out but unless it happens tomorrow I think today was it. Its probably getting too risky to go out with the chemo now. We had a lovely meal with the restaurant to ourselves for most of the time. We even spoiled ourselves with desert, wish I hadn’t been full other nights we had eaten there and tried more of them my Panna cotta was amazing as was Joe’s warm choc cake. I needed that sweetness.

So a quick taxi back to the hospital and my 9pm infusion, another dressing change, thank goodness as it wasnt stuck very much now, my nutrition drink and I was out of it.

I woke at 5am this morning for a couple of hours and then managed to get 2 more hours sleep and woke when breakfast was delivered at 9am. What a sleep, I felt fantastic. I ate and was connected for day 2 of chemo. I believe because its only day 2 I am not feeling anything yet. Which is a good thing, if I was to feel anything I am sure I will be given everything that is required. This place runs like clockwork, they are soo efficient and look after you so well, there is no place I would rather be to have this treatment. Today I didn’t get the urgency to pee like yesterday and yes, I asked if I needed to was it able to be stopped and of course it is. Once the infusion was finished they changed my dressing on my picc line as when I sweat it doesnt stay on well for some reason.

Then I was free until 5pm, I thought I was not allowed out anymore, but with the appropriate covers I was so we headed out for lunch. We went to the Mediterranean restaurant near the hotel since we missed the bus stop at a shop on the way. Joe had eaten here with David and so had some of the others and I was excited to have the beef stroganoff but it was sold out. I was disappointed that I couldn’t have that but the food was amazing. I dont think you can say the food is bad here in Moscow at all we have always had good meals. At the end of the meal the waitress asked Joe if he was Arab, and everyone who knows Joe knows that he often gets asked if he is Italian,  Greek, Lebanese or Arab, but today I think I really helped peoples perceptions hehe.

On the way back to the hospital we stopped at what we thought might have been a harris scarfs type shop, it was but it wasnt, a bit of bunnings in with a cheap as chips and a harris scarfs. Lucky we only had time for a quick look as it was time to get back. We were rushing in the doors at the same time as the lovely Lucy and we finally got to catch up in person since the whirlwind of thursday and moving rooms, was so nice. Thank you for my angel, our friendship and paths Lucy! x

Once upstairs I was immediately hooked up to my 5pm infusion in the lounge area where other patients Renathe, her husband and Kristoffer where sitting. I thought that this was a steroid but it is actually anti nausea and bladder protection against the chemo. Which is why I have the urge to wee all the time so flushing the chemo through is a great thing for my bladder. Once Kristoffer and I were finished our infusions the boys went out for beer and dinner, they must have been having a fab time as the guard told them they had 5 minutes to get their bits from inside and then they had to leave! I was having my 9pm infusion then and finally catching up on wonderland! My dressing was retaped again as Dr Fedorenko called in for the night to see how everyone is. What a Dr!

Today was the start of the chemo section of the treatment. This is the part that actually kills off my faulty MS attacking immune system and brings my immunity to as close to zero as possible. Straight after breaky (which was gross and inedible today), Dr Fedorenko comes in and says we will start in an hour. So I was about to head in the shower and the nurse came to hook me up. Im glad I got to go to the bathroom at least as they pump in 4 bottles of chemo plus at least a litre of fluid as well. (Didn’t get a picture before 2 bottles were finished.) The infusion lasts for 3 hours and you have some freedom ie can move about your room carefully and sit up etc but it went pretty quick. Towards the end I had a slight yucky taste in my mouth and just had some lollies to nutrilise it, but that was my only issue. Well that and needing to pee!!! OMG did i need to pee. Once the drips had stopped the unhooking process felt like and eternity and then I had to lay down to have a blood thinner put in my tummy and I was so close to wetting my pants! I made it to the loo and went at least every 30 mins for the next few hours lol. I am going to ask if I can use the toilet during tomorrow’s or perhaps its a good thing I have some diapers left, as I probably would have used one today.

After lunch which was some meat (chicken perhaps) pattie type log thing with rice and australian shaped bread, and we listened to the footy and watched the reds score. Well done United! It was time for a nap again for both me and Joe. I was buggerer but had to keep getting up to pee. 4pm rolled around and the internet got crappy again and its funny but sad how you feel very isolated and confronted when you have no internet. So Joe went for a walk and got me my own Russian mobile and data plan so I can be connected 24/7 and contactable on viber and skype etc without having to be logged into the free wifi here especially if the kids want me in the middle of the night here. I feel soo much better about that even though it is a little bit of a luxury. Joe brought back a pizza for me and man was it just what I felt like, it went down so well except for the tiny but of heartburn a little later hehe. Todays flavour of the nutrition drinks were orange, meh and cappuccino which was different for me as I dont do coffee.

I then had some steriod infusions again at 5pm and at 9pm and managed to have my shower finally in between them. I am now able to wear my russian pjs I brought with me on level 3 as it is a bit cooler up here.

There are 6 aussies here at the moment plus all of their carers and we have adopted Lucy to be one of us so really there are 7. We have all been accepted and the rest have started their journeys today. Paul leaves in a few days and is a great support showing us the ropes, he has made it through iso and is on the home stretch! I am at chemo stage with Kirstoffer from Norway. James, Katie, Rosemary and Monica all started their steriod and stimulation shots today. Wow its amazing we are from adelaide, moonta, sydney darwin and melboune x2 and on the otherside of the world in this wonderful place!

Another morning of walking up sweaty and today I was not feeling so good, my stomach and insides were hurting. I thought it was a combination of the bed and being hungry but I soon realised that it wasn’t and I felt “bruised” and tender to the touch under my skin. I couldn’t eat my croissant or ‘puff’ as they call it here as I felt rather nauseous and was ready to pass out. We quickly ordered a taxi and got back to the hospital asap. We had an awesome taxi driver who could tell I wasnt feeling flash and he drove the quickest way possible without being a hoon or us saying anything, I was very very grateful for that!!! As soon as I arrived I came into a very busy ward. There were people everywhere waiting to be admitted and move rooms etc. Dr F came straight into see me, checked my blood pressure and explained that it would be the steroids making me sweat and feel a bit out of it and the stimulation shots making me feel bruised and reassured me it was all within safe and normal limits and he organised pain relief straight away.

Next thing I know is there is a trolley in my room and I had to fill it with my belongings and I was moved to level 3. This was all a bit of a blur as I wasn’t feeling the best and it happened soo quick. I was quite saddened by the fact that I was leaving Lucy and coming up to my own room, it had been lovely to have someone there to chat to and help pass the time especially as she is a lovely person too. The rooms on level 3 are a lot cooler thank goodness but you can not open the windows and they are very sterile, Joe must gown, mask, and hairnet it on this ward as well as his booties every time he comes in.

Whilst skyping the kids I was called away to get my new (smaller) picc line inserted. Because of the pain killers I had had earlier I definitely wasn’t as anxious however it still didn’t make this a a pleasant experience. I had the same nurse but a different doctor and had the opposite experience of being talked through it like the larger one. This time I think I could feel the stitches and whilst the tubes are more flimsy and flexible there are 3 of them and this one is pulling a little of my neck however it is short term pain for long term gain hopefully and is a required part of the process. I had an xray to ensure that it is in the correct place and that was today’s procedures finished and we start chemo tomorrow.

Joe and I both had a sleep and then had a little wonder around the hospital grounds this is an old military hospital and like most buildings here in Moscow they are so exquisitely presented and the architecture is amazing. This is definitely it, I will not be venturing outside the gates now.

After Joe left for the evening I was really struggling with trying to connect to the internet up here on level 3. It is not a stable or consistent wifi connection and doesn’t work the best in my room. So I felt really lost without fb, skype and viber and couldnt even use my blog app. Things were not coming in, or going out and I found myself sitting out on the lounge near the nurses desk to try and catch up and make it all work. So if you want to contact me I will get it eventually and I hope I work out how to use it up here the best. Joe moved hotel rooms again tonight as he didnt have wifi connection in the new room either and when we finally touched base again he was having a beer in the hotel with David, and sounded a lot better than when he left me earlier.

Today was an ordinary day for me and I was pleased to talk to Kristoffer who has been on Level 3 from the beginning, about how the steroids and stimulation shots had been affecting him to and we were both the same so that was comforting. I now have theses awesome nutrition drinks that I must have both morning and night, and I didn’t mind the Banana flavoured one, but I wont be asking for too many more vanilla unless I have to!!

I woke up absolutely drenched and sweaty again today but after a good nights sleep. I jumped straight through the shower and just as well as Dr Fedorenko came in at 7.35am to set up the machine for a second day of Aphresis. The machine worked a lot better from the start today and it was pumping out the cycles. I did have the same high blood pressure, flushed cheeks and urgency for the loo by the end as yesterday and all went well and it didnt require any meds. I collected 190ml of blood today and was able to get my line out of my neck after a couple of hours. Whilst skyping the kids my collection finished and my little Bianca definitely has an interest in the medical field. She wanted to stay on skype and watch them take the picc line out of my neck!! They were only unhooking it from the antennas then but she wanted see it all happen, Nonna had to look the otherway though.

Joe and I spent the arvo talking with Lucy and David about moscow and the sights as some of the other people who have just finished their testing stage are all passing and are able to continue with the treatment. It is wonderful to have this connection both for myself and Joe.

Two hours later they came to remove the large picc line from my neck. Yay! However, this part was very squimish and weird! I did ask Joe to video it for Bianca however I am glad now that it didn’t work but that also means I got no pictures. I felt a bit ill and pass outie (if you can understand that) as they did this with no numbing or anasthetic, but it was over in a few minutes and I then had to stay flat on my back for 30 minutes. I wad relieved that it was gone, but it means I have to have a new one in tomorrow eek! The wonderful Dr F came into advised that we have enough cells (was pleased about that as my line was now gone) and my total stem cell count is 2.7 million. A perfect number he says! Yay, so this is the end of the easy part though so bring on the next stage of chemo.

Again I am free to have a night out and back at the hotel, so we quickly packed up, got a taxi back for Joe to get changed. In all the rush I forgot my little pink tablet that helps the stomach cope with the steriods and my phone charger so sorry for the delay. At the hotel we asked about going to the ballet and getting tickets there at the last minute and we were advised we couldn’t do it. Then we asked for a taxi and that was going to take 1hr and cost 1200rub! So we decided not to worry but then a quick google showed could catch the metro so we decided to give it a shot. I got to take some pictures of the metro this time. The metro from right at the hotel said it was a 35 min walk when we got off but the theatre was literally right across the street! Glad we did the sight seeing earlier to know what it looked like, massive bonus. We were going to the Bolshoi Ballet!!! We walked over wondering how we could get tickets and sure enough there were scalpers out the front. The tickets seemed dodgy with stuck on bits and we really took our chances but once through the building doors and then security check point inside we were in and all was ok and we had 7 minutes to spare before the show started. The show was Lady of the Camellias, we knew nothing of the storyline until interval when we purchased a program and the seats were not the best but we could see. The actuall ballet was so beautiful and they are very talented dancers however the story line was boring and Joe said he loved seeing men in tights! The theatre was sooooo freaking amazing, huge and beautiful I am so glad I had the opportunity to go and see it. I guess it depends on what is on when you are here and who is performing but I didnt think $70 aud for both tickets was expensive at all.

We were absolutely starving after the ballet and we ended up at Jamies Italian for Dinner. It was in a ‘mall’ and there is no waiting times or pre booking required here. The menu is pretty much exactly the same in moscow as it is in adelaide and so was the set out. We couldn’t believe how many people were out and about at 10.30 at night and that the shops were just closing. I thought that I was starving and that is why my stomach was aching/burning and uncomfortable but after eating I was no better. We got the subway home and lucky for us the hotel was as far as that train went and everyone had to get off lol. I was still clamey and sweaty and starting to not feel so flash so once we were back in the hotel I couldn’t wait to sleep. I am feeling fantastic with everything so far and besides this sweating we are ready for the next stage!

And one last little appetiser for you all! 😙

A great nights sleep, besides waking up for the stimulation shots I managed to stay asleep most of the night. I am waking up all sweaty and jumped straight in the shower to be ready for my stem cell collection. The collection is like a dialysis machine which separates your lymphocytes and collects only the T and B cells out of your blood. I am hooked up to the machine for 5 hrs and the aim is to collect 2 million stemcells while your blood is cycled through twice. The machine is very sensitive and they had to give me blood thinners quite a few times as the flo wasnt steady enough and then they moved the machine on to the floor. This is a very painless procedure however you can not move for the 5 hrs so you have to wear a diaper for… well, just incase. There are some side effects that you may experience, like tingling and numbness around the mouth, headache and high blood pressure. I have been having headaches/jaw aches but I was thinking this could have been tension from lying still and the shots and steriods anyway. By the end of the 5 hrs I was busting for the loo and my blood pressure was a tad high meaning I was a bit flushed so I had some pain relief. Otherwise I was all good and finished by 1.30pm moscow time. Now I had to wait for the results to come about 5pm to see if we need to do another collection tomorrow. I collected 1.3 million cells in 160ml of blood so I am going back again. 2 days of collection is standard and nothing to worry about.

There has been an influx of other aussies who have arrived at the hospital and it was great to have those introductory conversations and to meet them all. There is a big contingency of us here now and carers for Joe to travel with too. Looks like there will be some fun times amongst the seriousness of this treatment.

It had been a busy morning and next was my dose of steriods, you dont get the yucky taste soo much when they are adminstered through the picc line, so thats one bonus. When things settled down Lucy and I had a nice afternoon nap and woke for dinner. The food is tolerable, not my ideal menu, but I am giving it a go and besides the jaw aches making it hard to eat I am coping with it.

Joe had to move rooms at the vega, the hotel he is staying at, as he was near the construction side and this was testing his patients with them working all night. Hopefully this helps him get some sleep.

The afternoon nap meant we were not tired so when the nurse came for the 11pm shot I was surprised that it was already this late and let me tell you the shots are much nicer if you are drowsy lol.

Well hello 2.30am, I was awake for a couple of reasons, it was 9am in adelaide, I had already had 5 & half hrs sleep and after my stimulation shot I got stuck in to writing yesterday’s post. I talked to my kiddies and at dinner I got sent through some wonderful wonderful pictures and videos of them having a wonderful time with their cousins. Thanks for letting us share their weekend from over here xx

These stimulation shots are fine to physically have and I can tell you they are working, the chest pain or banding I was feeling is a result of this as the red cells in the bone marrow come out of your flat and large bones. So my sternum, ribs and pelvis and femur and humorous. I did a quick google in the early hrs to put my mind at ease as it was a tad scary being chest area, before I saw the lovely Dr F who remembers I had the pain and is the first thing he asked about. The pain is tolerable and treated with paracetamol at this stage,  however if it gets worse then there are stronger drugs he can give me. He checks my blood pressure and assures me it is not my heart and the shots are working. It will be interesting to see how bad the bone pain gets as I had only had 2 nights of the 5 so far and I can definitely feel it. Dr F is so wonderful, he informs me he has asked the nurses to make sure I have my steriods by 10am so I am free to do more sight seeing by 11 and to go and enjoy moscow!

We booked a driver that other HSCT’ers before me had recommended, Vladimir, his english was excellent and he knowledge was very insightful. I didn’t get too many pics on my phone so will add the rest to the fb album when I make it. Wow Moscow has some very very beautiful buildings and soo many of them, today we got out of the car a couple of times but it was a bit rainy and we only had a few hrs with Vladimir so we were happy to do a lot of drive bys and take it all in. We went to the soviet history park today and saw the all Russian Exibition centre its a large area with free entry to the park but to enter the museums etc there is a cost.

We went past the Bolshoi Ballet Hall, this is something I would have loved to have gone to see whilst here and on the first day I looked at getting tickets but every show was sold out when I could have gone.

Then we went to Victory Park but it was raining so didnt get out and we went to the Moscow State University – OMG it was huge and so impressive, SRS Assessing officers would have an interest in this as I know I did. It over looks the Moscow area, with a observation deck area across the road.

We saw so many interesting buildings and all so large and impressive everywhere you look but I’m terrible at remembering them all THANKS MS and I wont keep typing them all out to bore you, but here are a few pics anyways.

When our tour was finished we headed to the market near our hotel (it is located in the old castle I posted on the first day) and managed to have a look around and get some souvenirs, but I will have to send Joe back to finish it off as I the bome pain was coming back and we were starving. Joe went to the mens and I was just buying one more thing then was going to meet him when I ran into James and Sonia, a couple who are here from the yorke peninsula and James is a fellow HSCTer tomorrow too. Poor Joe I think I nearly gave him a heart attack as he looked down all the other isles instead of the one I was in of course. It was sooo good to have an aussie convo tho and to meet them.

When we headed back to the hotel and went for dinner we ran into Hanne’s parents and Kristoff who are other HSCTers from Norway and then leaving we were talking with Sonia and James again and another couple from melboune, Roseanna is about to be admitted too. It was really lovely to have that conmection and I can tell there will be special friendships made.

Tonight was my last night getting to be out and about as tomorrow my little friends will be put in and I will the need to stay at the hospital. We had dinner at the restaurant and had the most amazing Chicken Kiev I wish I took a photo it was on all these baked pretzel type things with little baskets and looked like a boat. It is only $12aud too. So thats it, from now on it will be hospital food or what ever Joe brings in hehe.

By the end of the day when I got back to hospital the first thing I did was ask for my butt jab! Put my Pj’s on and it was time to sleep!