Lauren's Leap for a Better Life

So after saying good morning to the kids and showing them my new hair cut I went to sleep at 1.20am I woke at 4.50 and couldn’t go back to sleep… my body obviously has had enough rest. Well I didn’t think so, so I stayed in bed spoke to my dad and then skyped mum til bloods, infusion and obs at 7 then tried to go back to sleep but still couldn’t. Then after breaky I tried again and when Joe called finally to say he was awake about 10.30 he asked why I was grumpy… I didn’t think I was but obviously sounded it and he said go back to sleep. I managed to doze off about 11 and was woken up by the laundry lady bringing me someone else’s clothes at 11.30. Argh!! Oh well morning snack was here and then so was Dr Fedorenko with todays results.

Hemoglobin = 117
Leukocytes = 7.99mill (in the normal range now)
Platelets = 256

They also ran a full chemistry again and all my liver, kidney and other functions are all normal and he is happy with everything. Today we are moving on to the next stage which is a dose of Rituximab treatment. Dr F explains how this will work and tells me I can use my toothbrush again and stop doing the vodka baths. Ritxuimab is another chemo type agent which will target and suppress any rouge B cells left in my body. I am sure there is more to it than that but this is my layman’s take for you and me lol.

So I jump through the shower ready to be connected soon. So much easier and cooler to not have to hang in the bathroom to do the vodka baths and get dressed etc as the cleaner is not there now. I have lost my underarm hair completely now but thats all.

Just before 12pm the lovey nurse comes in and gives me a pre infusion of protective medicines and I went and sat out in the lounge with Katie’s dad. Then when that finished I was connected to rutiximab bag for 5 hours. I am able to move with the drip and I went in to say goodbye and goodluck to Katie as she was heading into isolation, but I missed saying goodbye to James as he was already in iso.

Joe came in and bought some of the souvenirs with him so we could work out what we still had to get and I could start packing them away. Well I must say he did a friggen fantastic bloody job. I was very very impressed. We spent the arvo talking with Lucy Dan, John, and then Alfred until we went back for lunch and watched the footy.

Kellie and Matt had the kids up for dinner tonight and I can just imagine the fun the kids had. They really love playing with their cousins and I know my mum was very grateful for the break to be able to have dinner with dad. And it was lovely to skype and see you all too. Thank you xx

Aftet the footy finished we went back and sat on the lounge til my drip had finished and then I was allowed to pop out and get some fresh air!! But it was raining… we went down to see Kristoffer and he was needing to go to the shops so Joe went for him and we stood under the verandah. Dont you think Lucy’s unicorn umbrella suits Joe?

I have been feeling fantastic so far, I could even say the treatment is easy. Besides the night at the ballet and day 4 of chemo, I havent had any obvious complaints or issues etc. Everything has been managable and I’ve been great. MS wise I can tell my body has been being drained. ie my bad right leg which tells me when I need to rest etc normally has been sorer or more uncomfortable since transplant day but not too bad to affect my walking till now. When we went outside it was a bit of  stuggle and I definitely had a limp going on. I hadn’t noticed going to the lounge and back til after the rutiximab. It could be the lack of sleep too but it is probably the temporary worsening of symptoms that some patients experience. I had done enough research to know that this may occur. It doesn’t mean it hasn’t worked and it is all par for the course. It is the MS fighting on its way out!!

Joe, Sonia and Dan were going to try ‘the chilli place” for dinner. They weren’t sure what type of food it was so they were on a mission.

I had beetroot, some buckwheat or who knows what with a beef log thing and canned babies. The jar babies is soo much nicer. The canned babies was runny and tasted gross.

I am having an early night at 9.30pm and hoping I will wake up in time for the crows game at 6.45am our time. Murphys law I will stay asleep all night, but I am still not setting an alarm!

Besides getting up for the loo a few times I have been sleeping reasonably well here so far and ending up with a good amount of sleep overall. Last night however was a different story. After an hour and a half I woke about midnight drenched so changed my pjs, skyped the kids and was unable to get back to sleep til 2.30ish and then I was up again at 4 and unable turn my brain off! I managed another hour between 6 and 7 and was again awake. I was thinking about what type of natural products I would use after this treatment for a healthy new life, what kind of carpet we would put in our bedroom this time, what presents could I buy Tyson, Willis, my dad and Tarryn for their birthdays. What bills are due this week, how long will it take to lose all my hair and is this actually engraftment? Argh all good though I didn’t feel like I’d had no sleep so I was ok. I layed in bed waiting for my obs, bloods and infusion. At 7 they did my obs and I told them I had a headache so I had some painkillers, then about 8.30 finally my infusion and bloods. Then it was breaky and I was just looking up all the things I was thinking about in the night.

Dr Fedorenko came in about 10 with my results for today. I was very surprised they didnt take long today given they were taken late. If my levels are still up tomorrow then I should start engraftment.

Hemoglobin = 113 again
Leukocytes = 2.5
Platelets = 180

He gives me the great news that I can have my doors open now. I only had 6 days of iso and today is the 7th and Im free. I actually didnt mind the time to let my body rest and relax and it went super fast. I am able to go out on level 3 but I must mask up and Joe can come in my actual room with all his stuff on still. Dr F says if and when my leukocytes are above 3mil then perhaps tomorrow I will be able to go and get fresh air for a little bit. So we will see what tomorrow brings. This sign means masks only, I love it!

We are having an issue with getting our ensuite finished as before we left we could get the tiles and then they had a stock take sale and now they are out of stock! Argh FFS! So its been put on hold again. Not to much we can do from here so the parents have been trying to sort it all out for us. Thank you so very very much!!!

I spent ages on skype to the kids while they had dinner and got ready for bed. It was so nice to “eat” with them. 1 more week and we will be home. Yay!! Joe came and we went and sat in the lounge and socialised with Lucy and Dan, Katie and her dad, Kristoffer, Sonia and James til lunch came. It was sooo good to have conversations with these beautiful people. When I got back the nurse was waiting for me to have last neutropenia shot and infusion.

We shaved my hair off as it was really coming out in chunks, really thinning out in some patches and I didn’t want it all over my pillow again and I felt it was time. Man do I look like my brothers now!!! It is very liberating. Now to see how long it takes for it all to actually come out! Just for some TMI… underarms and bikini have movement but legs do not yet!!

After my shower I went out sat on the lounge again for the beautiful Rosemary and Monica’s new life celebration. And boy oh boy was it a gorgeous party. Everyone was there…. so many people and so many Pizzas and vegemite on bread. Everyone was so happy and enjoying themselves and it was just awesome. Congratulations ladies and welcome to your new life without MS!!

Then it was time for most people to hit the hay as it was after 7pm. Joe went back to the hotel and I was researching if these tiles were anywhere else and of course I found them in Brisbane so we will have to see if we can ship quick or if perhaps we go down a different path so I was having fun looking at all the options online. (A bit of house rules reno hit me) I then decided to watch some footy show highlights and I think Lucy might have been able to hear me laughing at old man crawf! Friggen hilarious!! Well till tomorrow folks…

Today started bright and early at 4am when I got up to go to the loo and I couldn’t go back to sleep. I had left the blinds open and I didn’t think that was the reason really but its daylight at that time too. So I layed in bed thinking any minute they will come and do my bloods, obs and infusion and of course it didnt happen until 7am today. Dr Fedorenko also popped his head in to check I was ok and said he would come back after his morning meeting. He had a busy day today, 3 transplants to do so he was here at 7am. I went back to sleep til breaky.

I had free time hehe and spent the morning on the phone to mum and dad and then went in the shower. I washed my hair thinking I might still have a few days til it moved but it doesn’t appear that way. I was given a large hand size towel to dry myself today and the nurse was so kind about the fact that they had run out of bigger ones. It was ok… it did the job!

Dr F came in with my bloods and checks for any movement on the hair front and I said no, not yet. He says day +8 it might start moving. Bloods are up well and truely today and are definitely on the rise.

Hemoglobin = 113
Leukocytes = .46 (when they get to 1.0 he will open my doors)
Platelets = 120 (yay in the norm)

Snack was meat again but lunch was Wednesday’s special… the tongue! Safe to say I only ate the mashed potato. Then I noticed I had forgotten to put my deodorant on and was very shocked and happy to see two tiny little hairs on the roller lol. So then I checked my head and yep its starting to fall out… was totally worth washing it! I am not sure if they will let me cut it again before im out of iso as I shaved it a 3 before I left home, but it has grown sooo much that I am not sure how annoying it might be if it comes out in chunks tomorrow. Will see what happens tomorrow.

The arvo went pretty quick, Joe was at the market finishing of the souvenir shopping and I spent some time skyping the kids while they were drawing in the hallway. It was truely lovely just to let it sit there and for them to go about their play and not be forced to sit in front of the screen. Worked so much better. I also spoke to Grant and Dani and caught up on Bj’s graduation. Sorry about all the interuptions from Joe lol.

I am really sweaty just sitting here today and I have a slight headache so I had some pain killers when they give me my jab and infusion. Joe came in later today as there is the party in arvo for the Lucy, James and Kate! Happy new life to you all. This is what we are here for and it is the greatest day of the treatment. Enjoy! Even though I was locked away in isolation Joe skyped me in for their celebration. Im so glad I could be a part of it!

Dinner was porridge and cake. Hmmm totally not what I felt like so I cooked up a pasta packet thing and put a tin or tuna in it. I was hungry so I cooked a value pack… didn’t read the part that said serves 5. It was very filling.

Dr Fedorenko came in to say goodbye and I told him the hair is coming now… he says its a sign that engraftment should take place tomorrow then.

I needed to ask for another dressing change as when I sweat they don’t stay on well and they did my obs. Everything was looking good. Joe and the other carers all went for dinner together tonight. Time to catch up on tonights tv, wonderland which is so friggen hard to put up with the stop starting of ten play and house rules (which works perfectly) and get some sleep. We only have 7 more days here… this time next week we will be on a plane home to our babies!

Ended up actually going to sleep about 2am after getting hooked on watching house rules. Instead of stopping at the house reveal which aired sun, I had to keep watching as it moved to SA’s Ryan and Marlee’s house. This house is in the suburb that I grew up in, and on the same street as my primary school and the road I travelled for my entire life. It is very exciting and I just couldn’t turn it off lol. I got a quick skype in before school and then went to bed. I didn’t wake up so sweaty today which was nice, bloods, obs and infusion at 6.30am, and then I went back to sleep till breaky. I had just finished breaky and talking with my dad and Joe was here. It was a really warm day here today, about 27° I think.

This is my view from my window.  We had a nice morning through the glass hehe and besides him going to out when they did my room and I showed etc and to visit the others here to cool off cause its soo hot in the little room for him he stayed till about 1.30pm. We had a nice skype back home to find that FINALLY the builders have been there today to fix our friggen ensuite. Its only taken a good 2 months and now is going to be a push to make sure its all done before I get home!! But it is in progress finally!

My bloods look like they are one the way up so I am getting close to leaving isolation perhaps. Of course need to see what happens tomorrow and I can only take it one day at a time but Dr Fedorenko is happy again and says maybe only 2 more days.

Hemoglobin = 106
Leukocytes = 0.18 (yesterday 0.14)
Platelets = 77 (yay I feel awesome about this jump)

There was no meat again today with snack… I miss this… but guess what – it came with lunch YAY!!! I really enjoyed my lunch today and Im glad I did cause all I got for dinner was mash potato, must have meant to have been a fish with it too. I didn’t feel like eating much more for dinner so it was all ok. Ive lost 5 kilos now so will be interesting to see what happens there. Im sure it will go back on just as easy! And unfortunately it looks like its off my calves so I guess its muscle wastage. Wish it was my tummy hehe.

After my infusion, obs (blood pressure is good today) and jab, I spent the arvo skyping my godparents and then talking to my mum. There went two hrs just like that! Joe finally found an outlet type shop that he was able to get some bargains at. Just some trackies and tops but he was finally satisfied that he was able to purchase something for himself I think. He was out shopping and I cleaned out our email account… man was that a big job and even the computer got sick of it and had a freak out so I made myself some microwave popcorn and watched tonights house rules. Now I am going to have an earlyish night at 10.30pm. Sweet dreams x

Woke up absolutely drenched this morning, when they came to do my obs and bloods at 6.30ish. Obs were fine and besides sweating I am feeling fine. I had to stay under the covers to keep warm cause my Pj’s were so wet lol, but the nurses gave me some dry ones. I also needed another dressing change as the sweat had pooled under the dressing… sorry if its a bit graphic… that darker brown patch is all sweat.

After breaky I lounged about and Joe came in. He saw Dr Fedorenko and sussed out the rules and discussed yesterday with him. HE IS ALLOWED on the otherside of the glass. Dr F was so apologetic to Joe and I was proud of Joe for keeping his cool and handling it well. While I was having my shower him and Dr F had a good chat apprently.

My bloods are still good today…
Hemoglobin = 110
Leukocytes = 0.14
Platelets = 48 (yay up on yesterday)

Dr F checks me over and I tell him that I am losing my voice a bit… not gone, but I feel like I have to yell to get my words to project. He is not worried. After telling him about sweating so much he says he its the MS leaving my body. How cute is he?!?!

Joe left after we skyped the kids and I had a little nap after my infusion, obs and jab. There was no beef at morning tea today. 😥 I woke for lunch which was soup, a chicken leg, cauliflower and a pattie log thing. Then I read a magazine and facebooked. If your on fb sorry for all my comments and likes etc I actually have time to read everything. I am usually just a quick scroller to catch up at home but I find myself waiting for new stories here.

After dinner which was a stew thing with baby food which I ate again, I watched house rules from the begining of the series till it was late enough to go to bed. Joe had dinner with Sonia, James’ wife and when I called him to say goodnight he was having coffee with Monika’s parents and Jamie, Debbie’s daughter. I am glad he has some company as I think he was getting tired of eating by himself even though he wasn’t going to admit it.

Early morning bathroom stops on the weekends work well for the time difference between here and home. I woke up about 2.30am and was able to skype the kids. As it turned out they were just doing the change over at Nonna’s so I got to spend the morning with both mums and my babies. They exhanged pressies and the kids showed me the succulent Bianca had painted the pot at school and her cards she had made etc. It was nearly like being there, well, ok not quite but I was satisfied. I could have got all sad about today and missing out, but to be brutally honest I think I’m the lucky and blessed one with the best present ever. (And I get to rest all day long!) Getting rid of this MS, this is the best thing I could ask for and to each and everyone of you who helped me get here – THANK YOU FOR MY PRESENT!

Sorry to Joan and Mum who didn’t get a restful day looking after my kids, but I hope it was enjoyable for your both anyway. Love you both!

Of course I went back to sleep and was woken for obs, an infusion and bloods at 6.45am. Surprise surprise, my blood pressure was a high, but still not a concern. Then I went back to sleep till breaky.

Dr Fedorenko brings my results in and does his checks. He tells me they have done a full blood chemistry today and checked my kidney and liver functions etc and they are all normal. He is happy with me. He says my leukocytes will probably keep dropping til about day +6 or so. And he will keep monitoring my platelets etc.

Hemoglobin = 108 (120-150)
Leukocytes = 0.15 (close to 0)
Platelets =  42 (above 20)

I found myself watching the port match and then decided that perhaps last weeks wonderland might be a better choice to kill some time, looks like it ended up being a good game in the end. But argh ten play you will be the death of me!! PS I got my 2 pieces of beef again today, makes me happy again. Just as it starts running nicely, the nurse comes in to do my room and I have to have a shower. 😐 and I’m in trouble cause I hadn’t washed my plate yet even though I had literally just finished it!

After finally finishing wonderland I am having my next infusion and shot and obs, blood pressure is up so they call Dr F and he is happy as he said its me and I explained I had just got out the shower etc. I was skyping the kids for bed just as Joe gets here with my milk and plastic cheese. They had just been through the shower and so had I and Dom was very instistant that wanted to see my shower so they had a little tour lol. Then, a cleaner came in a kicked Joe out! What are you doing in here? Get out its sterile, you can not come in! Woooo! Hold on a minute… when did that change… he was not in with me, but on the otherside of the glass.  So he finished with the kids outside the room and was giving me the computer and a little mother’s day gift mum had sent back when he got in trouble again. Poor Joe, Dr Fedorenko, Anastasia, and all the other nurses have said its ok and I explained this to the cleaner, but she said NO and gave me a talking to too! Then she cleaned the room he was in again! This same cleaner made me wear the hospital clothes today and not mine… she obviously has my interest at heart but man she is bossy today! This is the outfit they give you to wear. A bit ninja like hehe.

Well that put a damper on my day, nothing we could do though, so Joe went down to level 2 and caught up with the other aussies who are in day 3 of chemo there for a little bit and then went shopping at the big metropolis shopping centre about 1 hour away. Still normal price shops and nothing worth buying he said but he said it is 3 times the size of Westfield Marion and he had to use multiple metro lines to get there. I decided that pehaps I would hook up the foxtel go on the PC and watched 2 movies, walk of shame and the Fault within our stars, this helped pass the time and I can watch all the romances and comedy’s I like without pissing off Joe hehe. Lunch today was a soup and pasta with beef chucks and then dinner was Fish and mash potato. I definitely have my appetite back as I even ate the fish!!! And the cleaner was in, as soon as I had finished and was washing my plates happily for me. I dont know if she was making up or what? I then crashed it, I didn’t even get to stay awake for my nightly check in with Lucy (sorry hun). Now its 11.30pm and I am just finishing this and will hopefully go to bed for the night!

Thank you for sending the present mum, its hanging on my beside table where I can see it… I love that it says i love you mum when you squeeze its tummy!

After going to sleep around midnight I woke at 1am to go to the bathroom and this meant that I was able to skype the kids. This was awesome, they were happy to talk to me and share their morning before getting ready to go to Bianca’s dance lesson. Then of course I went to sleep for the night.

Obs were taken at 7am and all were good today, forgot to tell you all that they are monitoring temperatures as well as infection is obviously risky from transplant onwards. No high blood pressure today, bloods were also collected and I went back to sleep. I couldn’t wait for breaky today, thank goodness it was the nicer semolina porridge and an egg.

Today is Victory Day here in Russia! 70 years since the victory of the German Nazi in 1945 and the allied victory at the eastern front in the II World War. As it was the jubilee there are lot of countries dignitaries here, but no Abbott! There was a large and very impressive parade at 10am in red square and I enjoyed looking at this on the TV with the volume on mute as I couldn’t understand anything lol. Joseph said there were a lot of people out and about on the streets and at the carnival near his hotel. I am glad we got to see this… something else to cement how proud Russians are of their history. They have put on a good spectical and decorated the city well.

Blood results were early today and Dr F confirmed the numbers for me again. We shared a little moment where I asked if it meant it had killed the MS and he said yes my dear. We both had smiles from ear to ear. Instead of a normal persons limits I have specified the danger zone limits today.

Hemoglobin = 112 (must be more than 80)
Leukocytes = 0.16 (wants under 0.50 so its there! YAY!!)
Platelets = 52 (cant get below 20)

Then it was time to watch the crows. Joe watched back at the hotel and I watched here, I missed most of the 2nd quarter cause they cleaned my room and I went for my shower, but I survived hehe. I am so happy they won as you hope, but you never know what’s going to happen.

I pulled out kingston biscuits and treated myself, I was hungry today. I was stoked when mid morning snack came early, I was stoked that it was roast beef again, and I was absolutely stoked when I was allowed two pieces. I really crave this meat fix and boy did it make my day. Sad huh?

I had my infusion and injection and another dressing change then Joe came in and spent some time on the otherside of the glass and we skyped the kids. Its great to see him even though he can’t have any contact as such. Helps break up the day for both of us. Kirstoffer is in isolation now too.

Today mum and Craig had the kidlets and they went to hockey with Uncle Craig. Dominic is starting to want to use the toilet, which is a big thing for him to show an interest as he hasn’t really wanted to or been be bothered before we left. A shitty nappy was required to be changed and I’m proud of you for doing it Craig! Sorry!! Then they went to dinner at the Enfield and had a fantastic night there. They played for ages and Bianca got her face painted, she loved the fact that you put them on facebook for me to see. Thank you!!

After Joe left I had a little bit of kidney pain again. Nothing serious but enough to let them know and I was given some pain killers. All my obs were good.

Dinner was a cake/pudding thing tonight so I had some tuna, and cottage cheese on cruskits and my nutrition drink while watching the victory day concert on tv. And I’m gonna call it a night soon I think.

So today started pretty early, I think they did my blood pressure about 6ish which was a bit high still but I lounged around in bed for a while, had my bloods taken at 8am then got up and had my breaky. There is no rush to do anything and I haven’t heard from Joe yet. About 10 he calls and he is better today, thank goodness.

Then Dr F comes in with the news we are shutting my doors today and I am entering the isolation phase.

Hemoglobin = 112 (120-150)
Leukocytes = 0.27 (1-4mil)
Platelets = 65 (100-400)

He is impressed that my leukocytes have dropped so well and are a 4th of what they were yesterday! I am equally stoked as this means the MS is getting killed off!!! I think he wants this to get to .05 which is practically 0! (Im confused though if its 0.50, Anyway I will find out tomorrow)

So I have the run down about how isolation will work, what you need to do etc from Dr F and then Anastasia. I got confused here too, she told me I could keep my clean clothes and underwear etc, phone, computer so I put all the dirty stuff out and they still wanted to take my suitcases lol. Silly me…. I knew they took most things away. All good I just needed to put my clean stuff in the little cabinet next to the bed.

Joe came in and was allowed in through the door up till 3pm but we didnt risk it, just in case it was a bug. From now on there are two doors into my room. There is a bathroom and storage/fridge/microwave room first then another set of double glazed doors into the bed area. I must have the door to my bed area closed at all times and same on the otherside for the nurses etc. They will all be masked, hair netted, and only come in for the shortest time required. Food etc is still brought in to me and I have a steralising soultion that I must rinse all my plates etc in. When its time to clean my room, I need to go in the shower. So they are in one part and you are in the other. After the shower you have this solution that you must wipe over you. One for your body and one for your sensitive areas. Im sure its not actual vodka, but other warriors before me have called this a vodka sponge bath, so we will stick with that. Then there is no teeth brushing, an antiseptic mouth wash is given instead.

There was an infusion and an injection at 3.00pm and a changing of my dressing for the picc line again. I have developed a bit of an irritation from the dressing where the skin has rubbed away, but I am tough and it only hurts when they spray the alcohol spray on it lol. Time to say goodbye to Joe and time for my shower and for Iso to begin.

Today is Nonno’s Birthday, and it was great to skype while the family was there having dinner and lovely of them to post a video of cake so we didn’t feel like we missed out! Thank you.

Joseph went shopping this arvo and I must say I was apprehensive about what he might buy, I am a bit of a control freak for those who dont know me that well. Well when he got back to the hotel and showed me what he got I was quite impressed. Just a jacket each for the kids and a dress for B and top for Dom but he did well. I was relieved hehe.

I spent the arvo watching all the videos on the crows app. All the Hall of fame dinner speeches and catching up on videos I would never have watched otherwise. I found myself hanging for dinner. I am really craving protein at the moment and when the mid morning snack comes at 12. I find myself hanging for that yummy piece of roast beef that comes with 2 boiled apples. I really wanted meat for dinner and it was some varient of it and it also came with a side of baby food… It said mashed beef so reluctantly I opened it and tried some. I am not going to think about what parts of the beef it might have been, but it was ok on my piece of bread. Just like a dip! I then decided at 11 that I needed to have some two minute noodles as I was still hungry and I went to sleep.

Today is the day, Day 0. TRANSPLANT DAY!! and I woke up at 3.30am!!

I finished yesterdays blog and managed to go back to sleep for a few hours. I didn’t feel like eating I was nervous but forced myself as you need stamina and to take the tablets they give you on a full tummy. Dr F, Anastasia and the nurses all came in to give me a run down of the day and explain how it was going to happen. I explained to Dr F that I can see this egg on my right eye, its like a blurry spot but its not going away. Its like my brain image from my MRI’s and it has these moving dots and can get pretty to watch when they morph into giraffes and all sorts when I close my eyes. At first he said it would be because of stoping steriods it has come back, but I said it was totally new for me so he said it would be the chemo and it should resolve in a few days.

Next thing I was packing up room as they set up for the transplant. Joe and I sat out in the lounge waiting and waiting for the morning to pass then it was time to get started. I had to fast from 12pm. I didnt realise I was meant to wear a diaper again today and that I wasnt to wear any pants lol. So once I understood this it was on the bed and I was connected to heart, bloodpressure and pulse monitoring. They gave me something first which made me feel sleepy and connected me to a drip. Joe went to check on Kristoffer and he was the same. Then it was time to start. I think it was 2pm. Dr F was overlooking the procedure, Sasha the nurse was assisting, I dont know the other guys name (I will have to ask) but he was administering the stemcells and Anastasia was here too. Joe was at the end of the bed filming and where I could see him. It was show time.

You can taste the stemcells going in, it is a tomato sauce (like legos puree) taste, it is bad but not too gross. There is this increasing pressure on your chest when the syringe empties mine was from my shoulders to my tummy. My tummy was burning, like I felt hungry and my legs went really numb and sore at the same time. I never felt like I wasn’t able to breathe or was panicky, my blood pressure rose and they gave me some pain killers for my legs and then I had a headache. I was also very sweaty. At the end of the first bag I thought it was finished then, I had another whole bag of stemmies to go. Same thing, they are watching the monitors and checking you are ok with every syringe that goes back in. I would have thought the whole procedure was perhaps 30 mins from start to feeling myself again. It was done! Was so very intense, but very very managable and it is something that needed to be done.

I drifted off to sleep and Anastasia came to wake me up for my new life welcoming party. When I got up, I walked out into the lounge and everyone was there. There were some new faces and it was very daunting and hard to recognise everyone with the face, hair nets and gowned up etc. I needed to go to the bathroom but had to have my first one in my nappy, it is such a strange concept to try and go in the nappy. So I went back out and I’ll deal with that later. We were all waiting for Joe to come back with the pizza for the celebration. Once he finally arrived Dr F said some beautiful words and welcomed Kristoffer and I into the new life patients of Pirogov with the iris badge they give to all transplantees. He also said those fantastic words of 100% success for us both as we are at the right stage for it. Then we got to throw away the dry ice that our stemmies well frozen in. Such a relief and a cleansing moment!

Once I had eaten my pizza it was time to tackle this toilet issue. I needed to go, but my brain wasn’t letting me. It was so weird, finally I managed to do some then TMI sorry I had to finish on the actual loo as it started running out. But it wasn’t a good colour and was bloody urine so I needed to have a flush to make sure everything is going out the right way. For the next couple of hours I was hooked up to a drip and they were giving me stuff to make me wee and checking every time till there was no more blood colour in it.  This continued til about 9pm while I was drifting in and out til they were happy and then I was sleep for the night.