Lauren's Leap for a Better Life

Thursday night and Friday my mum went to jeanswest for me to get some new wardrobe items as I am self cleansing that in that area too and they had 30% off and I still had a voucher to spend from Christmas! Yahoo… new clothes are always awesome. But sending your mum shopping for you is hard so she got more than I asked and we returned what wasn’t me and she went to two shops to get my sizes… thanks mum!

We had a lazy day friday watching kids tv with Dominic and then having joes parents over for dinner. I was still coughing and not great cold wise but was ok. I also baked dads cake ready for decorate on Saturday. Love the smell in the house when you bake!

Saturday I was woken up quickly do Bianca’s hair before Joe took her to dance and then after he went to the ballet shop to get her tights for her competitions while they also had a 30% off sale… poor Joe what an experience for him! He said he was the only bloke in the shop with all these other women who knew what the were doing and wanted!

While they were gone I decorated my dads cake, I didn’t make a complex cake but still I found that I was able to decorate it faster and with clearer thinking and better dexterity than before my treatment. I can not say whether its the steroids or an improvement as a result but either way I’m happy and so was he. We had my first visitors besides the parents, my brothers and Tarryn. They came for dad’s birthday afternoon where I cooked a curry and a stroganoff and had an early dinner before all the boys went to the footy! Mum stayed and helped me with the kids, I’m glad she did as I hit a wall after they left. I only needed a 30 min rest till I had more energy, but its probably one of the first times I’ve felt I needed the rest after a busy day. It was nice to see my brothers!

Sunday has quite often been pancake day in our house and today I made them for my kidlets while Joe had a sleep in and we all enjoyed them. I had missed making them and eating them all together. After lunch Joe took the kids to his parents for a while so I could sleep I don’t know if he watched tv or slept too lol but after he picked them up he went to Paul and Kirra’s to give their boys their Birthday presents. I really wish I could go out with them… oh well but soon I will be able to I hope. While they were gone I bit the bullet a veeted my legs… I figured the hair wasn’t going anywhere in a hurry, just thinning out more everyday so I gave it a helping hand. Will be interesting now to see if it grows back!

My cough was not chesty anymore it had turned to being a bit more blocked in my nasel passages. I am definitely feeling a lot more tired this week. Not running around and buzzing getting things done like last week thats for sure.

Monday I had finished my antibiotic and I am not seeing my haemotologist till Wednesday so when Joe went to the chemist he asked if he could get a few more tablets to last me till then and came home with a whole box. Love our pharmacist! Then he brought his parents spare bed to our house as they got the kids singles now so we will see how this one is as we have had mine since my 18th birthday!! Once Bianca was home from school we all went to the park. This was soooo nice to get out of the house and see the kids having fun kicking the footy with their dad and riding their bikes so well! I just sat on the swing and watched. When we got back from this I crashed out on the lounge!

My first outing to where others would be present was to the Doctor’s, just my GP to get the script for the antibiotics the chemist dispensed yesterday which required an authority!!! Also I asked him to order some basic bloods ready for my appointment with the haemotologist tomorrow. He was hesitant but did it. And I survived the appointment with my mask on and after getting my bloods done (without feeling the needle prick here either) we headed straight home afterwards. Dom and I had an afternoon nap before they headed off to swimming.

Wednesday was a big day for us, Joseph and the kids were off to the races and I was finally seeing the my haemotologist who would be monitoring me now I am home. I am seeing Dr Ian Lewis at the Royal Adelaide Hospital and I was very pleased with how my appointment went. I didn’t have to wait too long (with everyone in the waiting room) at all and once I was in he asked me all about what I was eating, how I was managing, if I had any pain etc, he checked me over and was pleased with everything and how it went. He performs HSCT for patients with leukemia here and is well aware of how this treatment and how to look after me now. He was happy to take the time to explain the chemo effects on my blood levels for my mum. He organised bloods for the next 2 and 4 weeks, a script to continue my antiviral medications and then a appointment to go back next thursday to have an antibiotic called pentamidine which is an oral inhaler. This is instead of having bactrim as I am alergic to sulphur drugs. So every month I will go in for an hour or so, have this inhaler until I am post 12 months from transplant. He told me I can get rid of the mask except in public/crowded places or if someone is sick. He has also given me permission to leave the house and start doing more things, he says I can relax a bit more and just to exercise common sense when it comes to doing things and going places. This will make things easier and will mean a bit more normality for the kids and me! My bloods levels are back in the normals ranges and are…
Hemoglobin 111
Leukocytes 8.1 million
Platelets 227
Lymphocytes 1.0
(This Lymphocytes level is lower then when I left moscow but is normal and is because of the chemo which will be in my system for around 5 or so more months)

When we left there I went back to the gp to have my income protection forms competed… yesterday he asked me to come back for this. Hopefully I can get this lodged and it gets approved asap. My godmother is here from Newcastle for a couple of days before she is off to England with her mum who lives here, so we had dinner together and a lovely catch up! I wish they lived here but it does make the times we catch up so much more special.

My cold is on the tail end now which is good, I have a really swollen face and chin still and my knees are soo freakin stiff when I bend down or have been standing too long. I also found out that my little miniture hump back is also from the steriods and is completely normal. I don’t think I am walking with such a noticeable limp anymore and I dont have a stronger weird feeling in my leg like my body knew I had the treatment at the moment. Whether this is steriods or a result of treatment, only time will tell but thats how I am this week. The last couple of days I haven’t been as tired as at the beginning of this 2nd week. It is now 1 month since my transplant and so far things are looking good!!!

Being back in our house was very strange, we have lived here for 7 years now and being away for that whole month made it feel weird to be home. It took a good 2 days to settle back in and feel like home again. Bianca’s class was conducting the assembly first thing Friday morning and obviously I didn’t go, but Daddy was able to be there which was nice for both of them. I stayed home and had a little man who practically sat on top of me all morning. We had a nice afternoon nap when we woke to Bianca’s school calling to say she was really unwell with 39° temps and Joe had to pick her up. So she was quarantined to her room and me to mine and we stayed away from each other. This sucked!!! Joes parents brought us pasta they had cooked for dinner which was nice and easy.

The kids loved their pressies!

Over the weekend Bianca and I wore masks and tried to be in different areas of the house most of the time. I really enjoyed having showers in my own shower again, and I had become this cleaning freak. For those who dont know me that well, in the past I had been too tired and did not operate fast enough to make everything spotless as I went or even at the end of the day, but at the moment I am buzzing from the steriods and am able to maintain it as I go and it feels wonderful to have a clean kitchen all the time.

Obviously shopping is a high risk factor for me so I looked into online shopping and placed an order at coles for Joe to collect and a delivery from woolies. I was a little bit impressed with our local coles being a click and collect store but woolies doesn’t have one near us so have to get deleveries when Joes back at work. Saturday we just veged and Sunday Joe took the kids to visit Dave and Emily and his parents etc while I stayed home. I was experiencing so knee and hip pain however only once did I need to take some panadol for it. I had felt like I had sat with my legs bent sideways for my hip to hurt or crossed legged or standing for too long with my knees. It probably is also a bit of bone pain but it is all normal and to be expected. I had noticed my face was a tiny bit puffy, but this also was normal.

Changing timezones was pretty easy for me given I didn’t sleep too much at night towards the end of my treatment anyway or really get into Russias timezone. Now I am able to sleep nearly all night here and I adjusted back quite quickly and easily. Poor Joe though, it took him a while, he had jet lag and was buggered for most of this week!

Getting back into the school routine is actually quite easy… I am ready to get up, make Bianca’s lunch, unload the dishwasher and get her ready for school as I am not feeling that fatigue I used to feel. However it is magic of the steroids at the moment so again we will see what happens after they wear off. Joe and I are having bacon and eggs most mornings and I even had baked beans on toast which is something I had never eaten before and had specifically ordered in the shopping as I felt like it in Russia. My taste buds have changed from the chemo so it will be interesting to see if they stay like this or revert back. I even was happy for Joe to put the pork in my stirfry. I never eat pork (except the crackling)! The kids are enjoying helping me with dinner preparation.

Monday I had a nice 2 hour soak in the bath while Joe and Dom were out and then I had my first adventure out of the house! After my shopping was finally delivered (had selected delivery between 8 and 11 and it arrived at 1.20pm grrr! Now I have free delivery on next order too) I went to the letter box hehe and opened up the front door to let some sunshine in. By night time I started to notice my glands under my chin were tender to touch, were quite large causing this big lump under my chin and my face is quite swollen…

Then Tuesday I had a little freak out after reading the medication fact sheet on the antibiotic as I was more swollen again when I got up and asked mum to come over and see what she thought and I also asked on the forums. It was all normal, not an allergic reaction but a post HSCT symptom of the steriods. As someone said welcome to the mellon head club! I was also getting the start of a cold so thats why they were tender under my chin too. I spent most of the day playing mario kart one the wii with Dom, was so much fun he loved it!

By Wednesday I had developed a bit of a phlegmy cough and found myself sleeping most of the day while Joan and Michael looked after Dominic then Joe took Bianca to the crows training and balfours pie night for the auskick kids and they both had a ball!

Then Thursday I was worried about my cold developing into something nasty but after checking and thinking that I was already on antibiotics for my sore throat when I left and am on antiviral medications for the month I figured there is nothing extra the Dr could do or suggest different so I am ok till I see my hematologist next week. I also still have some of the mouthwash from ISO that Dr Fedorenko gave me to bring home and am using that. I actually left the house today… I went with Joe to collect Bianca from school. I stayed in the car and it was worth it as Bianca was pleased to see me there even though it felt weird to be in a moving car lol.

I am feeling fine besides the cold, I still have some hair in patches on my head and most of my legs eek! I am able to cook and clean, I am on top of all the washing and have gone through the kids draws and cleaned out and re arranged their clothes, even though I only did this before I left but they have grown so much! Next week I am going to tackle my clothes and clean out my wardrobe and all my old toiletries and make up too, cleansing and being the new me!

Some people are asking if I have noticed any changes or am feeling better etc, I won’t know for some time yet and am expecting that once the steriods wear off in what could be a few weeks or as many as 6 or so weeks, that my body will more than likely crash as they help get you through the hard part of the chemo but only for a certain period. Once they are out of my system then the chemo will still be working and I could really notice the effects then. This is often referred to as the roller coaster 🎢 and brings with it highs and lows in recovery and fatigue and temporary worsening of old symptoms. Whilst improvements are going to be more than welcome the main goal is to stop the MS and halt it where it was and recovery is going to be a marathon and not a sprint!

Thank you everyone for your well wishes on returning home and I can’t wait to see you all soon xx

We made it…. we had a great flight home. The first leg from Moscow to Dubai was easy and we felt safe and secure on the side with me at the window. We did the whole wipe every surface and make it safe and watched a movie. Then in dubai we grabed some makeup brush cleanser and checked the Beluga Gold Line price (so pleased it was nearly half price in moscow) and made our way to the business lounge. It was so hot in the airport and I was sweating like crazy with my mask and beanie, but I soon cooled down with some water and a chocolate muffin.

I didn’t book wheelchair assistance like what was recommended for a couple of reasons, I can walk, we had 3 hour layover and Joe was there to help me, I didnt regret it at all. We like to do things in our own time and I didn’t wanna be rushed off and parked somewhere and then need the toilet or go and find my own food etc or to have Joe need to chase or keep up with his knee. Also as we had 12 hours in Dubai on the way over I had to get a Dr to complete a form for Emirates to say why I needed it one way but not the other and we didn’t want to raise any flags on our tourist visa. If however the treatment was hard on my body or my circumstances changed with my walking while I was there my agent would have changed this for me. I was fortunate I and I managed perfectly, slower than prior to treatment but no issues.

It was time to make our way for the final leg and when we went through check in they were searching everyone’s bags and removing all alcohol and liquids etc. This meant that we had to stand around waiting. Eventually they let us on the plane and we were still the first row of business class but we were in the middle 3. So I chose the middle hoping I wouldn’t have anyone next to me but I did and it was strange to be making decisions about where I was safest lol. There is a lady we noticed before boarding coughing and we were praying that she would not be near us… we watched and thankfully she is at the back of business and on the otherside, it is scary with no immune system. We sat for ages on the tarmac waiting to leave… but we were still on schedule and it was a long flight but being able to have a sleep and lie flat was truely needed. I had a few hours sleep but Joe relished in the opportunity to sleep, he was exhausted. I woke him up at one point as I had to physically climb over his legs to go to the toilet lol. Sorry babe. I on the other hand was thinking when we get home its going to be bed time… not sure how long its going to take to readjust to the time zones and sleeping habits and at 3pm adelaide time I thought I should stay awake. We watched the kingsman wow what a cool movie.  I did eat the airline food just the hot meals and was very cautious about what I ordered. Dr Fedorenko told me it was ok, and I know not everyone agrees that it is safe, I was speaking with our air hostess who was from perth on the mosow-dubai leg and she says everything is temperature controlled and is a fresh as it can be as they have very strict guidelines they must meet. She still put a mint leaf in my apple spritzer though so she got me another one. If I didn’t eat the food I would have been starving with my cups of soup and packets of chips. I don’t think I will want to travel any other way in the future hehe.

Well when it was time to get off we were straight through customs didnt even bother to get our maximum duty free alcohol allowance as we just wanted to see the kids. When talking with the officer she knew about the treatment and wished me a good recovery and then quarantine, we had no issues with any of our souvenirs in fact they didn’t even want to check them… they just asked if I was masked up as I was sick and I explained I’d just had chemo and it was for my protection and they said all the best too. Wow actual people with hearts here in serious roles.

Walking out into the arrivals Bianca only had eyes for her daddy, it was soo beautiful to see. She ran up and gave him the biggest squeeze and locked eyes with him. Dominic came cautiously up to me, you could see he wasn’t sure about the mask, but he still gave me a beautiful hug and boy was it awesome to have him in my arms. Then we swapped and Bianca warmed up. Both sets of parents came which was lovely. Once we got to the car I took my beanie off and Bianca laughed and wanted to touch my head, of course so did Dominic. The conversation on the way home was interesting and so nice. Dominic has really shot up in height and his talking is awesome.

At home we gave the parents their presents and they guys had a drink. It actually feels really weird to be home, the house feels different, I guess its from being away so long. Poor Bianca, she was knackered so I put her to bed which was lovely and Dom stayed up for a bit more then wanted me to put him in bed too. Was nice to tuck them in and see them sleeping. It is wonderful to be in my own bed too, I am not sure that it is as comfortable as the hospital bed to be honest, I did like that bed, but we are home sweet home!

I wont be updating everyday now… but will do when I need too. Thank you everyone and till next time xx

Last night I had an early night, falling asleep by 10.30pm but at midnight I was awake and needing the toilet. A quick skype in to say good morning to the kids and both my mum and Joan and Michael were there to give the house a good clean before we get home. I can not say thank you enough in words how much they have helped me with all their love support and help! We truly appreciate it and love you xx

I was wide awake… and hungry so I had a nutrition drink and facebooked, a bit of cheeky shopping and ordered an new phone cover off ebay. Surely not for 3 and a half hours… it was 3.30am and another toilet trip I tried to sleep! I managed to sleep from 4 – 7! These steriods must be strong.

After feeling sooo bloody fantastic today I have some complaints…. I have strained my calf muscle, its sore but is ok and I have a sore throat!

Before I went into the shower I asked if I could please get the dressing (which was falling off) changed if I got it wet as I wanted to scrub my head! They came in and put some blue solution on it and removed the dressing. Man was it heaven to have a shower with the head connected to the wall and not have to hold it and stand under running warm water. I washed my hair and you could really see that more had come out. I still have quite a bit to lose, but it made a difference. Bikini line and legs are still thinning if you wanted to know lol. This is the marks the line left.

So I went out to let the nurses know about my sore throat and was sitting on the lounge waiting while they finished their phone call when Dr Fedorenko comes to see how I am and sits on the lounge with me. I let him know and he tells me to go back to using the mouthwash and goes and gets me two more bottles to take home with me and also gives me some antibiotics to start when I get home. We then talk about tomorrow’s plan and he tells me I am free today and should go out for a walk if the weather fines up. I found myself holding back tears as I am so grateful to this man, I am saving them for when I say thank you and goodbye. Another beautiful moment shared, he genuinely cares so much!!

About 11 I decided to have a little lie down till morning snack arrived and then Joe came in with the shopping for me to pack! I finally got to see the things he had got the kids, he did so well! And he managed to pick me up a nice pair of leather gloves too. Thanks baby I love them!!!

We spent the arvo in my room skyping the kids and writing the cards for the staff here. I gave it a go in Russian 😉 and I think they appreciated it. I hope it said what I wanted and not what google translate said hehe. Joe had a little nap while I ate my lunch, he was buggered and ready to go home.

We went down to level 2 to say goodbye and goodluck to a guy from Sydney who started yesterday. He is born the same year as us and he and Joe hit it off, but who doesn’t Joe get on with… then we returned to level 3 and I said goodbye to Sonia. This was emotional as the friendships that you form here run deep. Her hubby James is in iso and we have enjoyed their company for the last 3 weeks and we will miss you both.

Dinner was fish and mash potato tonight and I was starving again so I ate it, then my last packet of rice and a yoghurt.

Then I packed! Omg what a task… lucky I didn’t bring too much with me or we would be stuck with no room to bring anything home!!! I was sweating so much and panicky, it was a big job. I thought I was done till I realised how much I still have to squeeze in in the morning, my pj’s, shower toiletries, the laptop, what ever Dr F gives me medicine wise and paperwork… i might leave my microwave bowls and mug here! I hope it means we dont have too many little extra bags to contend with.

Right done! I finished the day absolutely knackered and a packet of microwave popcorn whilst I watched house rules and Joe finished packing in the hotel after he had a nice final dinner with Sonia Dan and John tonight. Sonia sent me some kind words and pics of them having a toast to my new life… Thanks guys CHEERS!!! xx

Good morning 4am! Woke up drenched again and needing the toilet and couldn’t go back to sleep. I tried not to pick up my phone so I wouldn’t “wake” up but it was no use. Obviously the steroids mean 4 hours sleep is enough! I caved and went on fb… to see that at dinner last night I shouldn’t have had the ice in my drink. Very good advice and something I had forgotten…. I won’t do that again!

This is how light it is at 4am here! Well it got to 6am and I noticed some bone pain in my ankles knees and legs so I got some painkillers and they took my bloods at the same time. They took the edge off but that was all. I didn’t manage to go back to sleep til 8.00 and then that was only 30 minutes. When breaky came I was ready and waiting and then I skyped the kids. They were sooo not interested in talking to me so I had a good catch up with my mum.

Dr Fedorenko came in and checked me over, bloods are good today. He says my Leukocytes levels indidcate an engraftment peak and are all normal. He then checks my hair and we have a little moment where he says new hair new life! God this man is so sweet!

Hemoglobin = 109
Leukocytes = 16.09 mill
Platelets = 213

A little bit of freedom as now I am getting to the final days here… besides some blood tests and any pain medication I am finished my actual treatment. YAY! My line came out and I had to lay flat for 30 minutes. This is the line, all the white part was in my right down my neck!

Once I was able to get up I had my morning snack and I wasn’t in any more pain. I tried to have a conversation with the kids, it went a bit better and then I sat out on the lounges to wait for Joe. He was doing some errands on the way and when he got here he appeared ‘over it!’ We skyped the babies as before Bianca was upset that her daddy wasn’t there so she had a little cry for him and I promised to call back as soon as he got here. It was the first time in the whole month that they (Bianca today) had appeared upset.

We were talking with others out on the lounge and I went to eat my lunch while it was warm today. Joe wanted something to eat so we located the cafe here after all this time! He had some pork and buckwheat? Perhaps? He said it was really nice. I got an ice tea, but really wanted some chocolate or something sweet they didn’t sell anything, it was all healthy food lol so I managed find another lil kiosk to get some. And my leggings turned up YAY!

On our way back in we called into level 2. There are 2 new aussies here today. Welcome to you both, I wish you all the best but you won’t need it! Your are in the best care!

Joe, Dan and Sonia were off on a mission to find the Beluga Gold Line Vodka at a decent price, traveling on the metro, looking at more beautiful stations and then were heading to catmap for dinner. I sat out on the lounge reading magazines and talking with John until dinner. Dinner was a beef stew, it soo nice but was only a mouthful so I had to cook a packet rice, then a cup of soup too, 4 cruskits with cheese, then I ate a yoghurt and had my nutrition drink. I must have been hungry!

I did a little packing of the extra things Joe brought in today for the declare bag, and a tidy up of any food stuff left over. I have used 2 sugars every morning in my porridge and these are still what I have left over!

Then it was time for house rules and an early night! I cant can’t believe we have only tomorrow and half of Wednesday left here and then we will be on our way home! Please keep your eyes out for an important announcement soon regarding my return home! X

A nice solid 5 and a half hours sleep last night with a 5am wake up. I was hungry and got myself a nutrition drink, watched the new videos on the crows app, thought I saw Todd on the crows show episode and got excited but he says it wasnt him, caught up on fb and then went back to sleep till breaky.

Dr Fedorenko came in at 7, he had been on call all night with his shift starting at 7am yesterday and him finishing at 11am today. Lucky for him he only has to do this every so often. He explained today’s procedures… I am having the regular preventative medications and then a jab in the butt for pain as the steroids are not as strong today and then a little later a smaller dose of steroids,

I called in on the kids who were just about to go back home from Dave and Emily’s. They had a nice day drawing, playing at the park and with Rocky and Dom gave Em a little taste of what a day of strawberry eating can do to his tummy. Sorry hun! I am not sure who was more tired out Bianca and Dominic or David and Emily! Thanks guys xx

Then the power went out… they were doing maintenance and had turned half the power off. Of course my mobile got down to 10% the computer was still ok, but I was using my mobile as a hotspot, and my room got warm. I decided to then go and sit out and read a magazine on the lounge. I found myself sorting the coffee table items – magazines, into english and russian and then in name etc, then books and dvd’s etc in size order. I must have bored!! Then Joe and Dan come in and as Joe was heading into the Kremlin he had bought the camera in but was needing to charge the battery and I had the charger here but there was no power. Then we realised the TV had power out in the lounge so we were able to charge my phone and the battery etc. I guess he always finds a way of making things work!!

I went back into my room for morning snack and I got my 2 pieces of beef again!! Yay! Then we skyped into say hello to the kids and my mum but it was more like goodnight… They were buggered, they were both wornout and so ready for bed! Then we turned on the power game and looked like there was no power in Brisbane either! Sorry couldn’t resist saying something! I had a quick 3 minute conversation with BJ but the viber connection with not good reception was so hard. I managed to work out it is nicer for him now, out of training, that I will be able to see him on the June long weekend and everything here is good! We will catch up properly when I’m back buddy, sorry! I was hooked up to a quick infusion of today’s steroids and that’s it now for today.

Then Joe, Dan and John left to go to the Kremlin and I went for a walk with them to the gates. It is nice to get some fresh air. Once back in, I sat out talking with Sonia till lunch came. Then we both were trying to muster up the energy to move! I let my lunch sit there for a while then finally got up to eat it and it was luke warm… it was soup so it was warm enough but even so I went to put it in the microwave but of course no power! Then halfway through my cold main the power came back – of course I should have been more lazy for 5 more mins and I would have been able to have a hot lunch!!

I was very happy that finally there is tonights episode of house rules to watch… Its been a long 3 days without it lol. I Only got through half of it before I went into the shower now I had lights as I didn’t want to be late for dinner!

I was heading out!! Kristoffer and I were allowed to go somewhere for dinner… We decided that the hotel restaurant “Gusi Lebedi” was probably the safest place to go as its not crowded and we know what the food is like. It was really super to have dinner with everyone, Joe, Sonia, Krisoffer, John and Jamie, even Manny and Stephanie dropped in to day hi! I need to be really super careful with my baby immune system. So we masked up and got a taxi back to the hotel. Straight into the restaurant, wiped down the menus, and didn’t touch or eat anything were are not meant too. I need to make sure everything I eat is well cooked, or not raw salads etc that I don’t know if its washed etc or anything that can harbor bacteria. Just like a pregnancy diet. I had a veal schnitzel minus the lettuce and with roasted potatoes and grilled veg. It was delicious! I then had warm chocolate cake for dessert… I had been craving desert and cake so this was divine! It meant that Kristoffer and I were pushing it to get back in through the gates before 9, but we made it… JUST!

Once settled back in, I watched the rest of house rules and noticed my leg hairs are thinning finally… Dr F told me today I might not lose them so I was very happy to see this hehe! I have had no complaints at all today, my walking is still more unsteady than before the treatment, but thats how my body reacts when I am under stress, or tired etc and my body has been through a lot so it’s to be expected I guess, but no more pain today! Happy wedding anniversary to my parents for today… sorry you had work and my kids!

Hello 1am… I was awake and skyped into the kids, and then I noticed the bone pain… OMG my legs, I could feel them! From my hips through to every bone in the soles of my feet were in agony. I got up to go to the toilet and my walking was shite and it really hurt to move. I couldn’t put weight on my feet and needed to use what ever I could hold on to to walk. I haven’t needed to call the nurse in the night yet… (they sleep on the lounge out there) but I needed something for the pain. They gave me something and then about 3 it kicked in and I went back to sleep. But at 4 am I was awake and it was worse. I needed to get some stronger meds. I got them and wow they worked nearly instantly and I was able to get some more sleep.

I was awake at 6 for the crows, no need for the alarm. I was still in pain but not anywhere near as bad in the night. I enjoyed watching the game and was very pleased we won. I know Nick was way worse of than Brodie, but I was over poor poor Nick. Brodie was injured too and hope Jenschy is not a serious acl or something. Well done boys.

After breaky I was having a lie down and Dr Fedorenko came in we had a good discussion about the bone pain, I didnt have to tell him as he already knew. He explains that 30% of people experience bone pain on engraftment. This is normal and to be expected. He said hopefully it will only last a few days but to make sure I have some pain killers and let them know when I have any problems or the pain etc. I can have the meds every 6 hours. He also said to make sure I get out for a walk again but it is another crappy wet day! They are not taking my bloods til Monday as the Rutiximab will alter it again.

What is engraftment? Engraftment is when the stemcells make their way back into your bone marrow to start making my new immune system with no memory of MS. Yay… go you stemmies! So bone pain = A short term pain for long term gain!

At 11.30 I figured I better get up and and get moving and see whats going on out there after my snack. Everyone else is now in Isolation so I decided I would open my bags that were returned yesterday and put my washing away now it had been drying all over the end of my bed and the chairs for two days. I am missing a pair of my leggings, couldn’t be my cheap target pair, has to be my expensive intimo ones. I have asked the lovely Anastasia and she will hunt them for me. So now I have essentially packed my bags to come home, my food suitcase is now our declare bag with our souvenirs and my bag is packed. Its getting close now, I can see the finishing line.

Todays treatment was just some steroids and that was all. I had this infusion over lunch and then I made a jelly. At 3pm I made it into the shower and then Joe arrived. He had also gone back to sleep after the footy and then went to the market to pick up the final bits of the shopping. He picked me up this Faberge egg and when I saw these before it just resonated so much I had to have one…. NEW LIFE IN MOSCOW!!!  He is getting good at bartering now too. Thanks baby! Thanks Sonia for letting me use your photos of the markets too.

This weekend David and Emily are having our kidlets. They dont have any kids of their own yet, so I hope it doesn’t put them off too much. Im sure it wont really because I know how much they love them and they know them well and they are perfect godparents to Dom. Today they went to the park for a picnic lunch, strawberry picking at mount compass, baked a cake (was awesome to watch them decorate the top smushing the strawberries in), watched a movie, had a bath and they were fast asleep at a good time… you guys did that too well!!! Thanks again xx

My internet ran out, I had used 30 gb’s already eek!! Poor Joe, he went out in the rain to get me a few extra gig to get through the last couple of days. I was going to go for a walk then too but it was too wet! I did manage to stand under the veranda and get some fresh air but then I came back in and turned on the laptop. I realised a few people had been clicking on the blog post page and Im sorry I hadnt updated that since I swapped laptops with Joe a couple of weeks back… I have put the links up now. Sorry!!

Joe, Sonia, Dan and John have gone out to dinner to a Georgian place called Ketsu tonight and I made a currie chicken packet mix…. well the curry was not a good idea as now I have heartburn and am sucking on fruit tingles as I write this. I have just downloaded all of my 4169 photo’s and videos off my mobile so I have some room. Took me ages and I hope it all worked ok and I got them all. Now I have 11 gb available… should have done it earlier oops!!

PS I haven’t had much more pain since about 1pm so here’s hoping it doesnt come back in the night! Dr F has been here since 7 am and will work through to 11am tomorrow. He just came in to check all is ok and say goodnight. What a man!