Chemo....tick; Rest day.....not really!

Day 16 & 17

First things first - this is Paul writing the last couple of days blog, not Nat! She's absolutely wiped.  Nothing to be worried about readers - but I've never seen her so tired. Perhaps on a couple of occasions - like after the 18 hours of childbirth, followed by emergency caesarean for our first child.  Just to give you the picture of how tired she was.

So suffice to say I can't write it as well as she can or from her point of view.

Tuesday - last day of chemo. I arrived at about 9:15 having walked in from the hotel.  Its about just over an hour's walk for the 6 or so kilometres.  Good company with Matt's carer's Laura and Bryn.  When I arrived Nat was already hooked up with the myriad of chemo bottles and underway, quite a bit earlier than usual.  She was also very emotional.  It might have had something to do with it being our 14 year wedding anniversary, or being in a hospital bed in Moscow having chemo, or not seeing the kids for 3 weeks now.  I think its was combination of all of these, but either way she cried through most of the morning.

I had a little surprise for her.  Thanks to my new found friends Laura and Bryn we had brainstormed some gift ideas a couple of nights ago, and then with the support of Bryn, we went into Moscow the day before to shop.  Thanks guys.

The gifts went down a treat.  We had said we wouldn't celebrate, but to be honest I couldn't think of a more important time to tell her how I feel and how lucky I am to have Natalie in my life.  She will often say that "you didn't sign up for this", but I think I did.  And I know if the roles were reversed she'd do the same - what more could you ask for. So I felt if there were ever a day she needed to hear that, then it's today.

The second part of the day involved the hunt for hot chips.  Again with my main accomplice (Bryn), we hunted down a café/restaurant on the other side of the hospital away from the main road.  We'd heard they were slow, but the chips were good, so that's sounded like the best bet.

Bryn and I set off and found our target easily.  A couple of notes for those that haven't visited Moscow before: 1 - shops are difficult to identify.  Signage and shopfronts are not particularly large or bold, and of course being in a different language its made harder. We knew they sold burgers as this shop actually had something resembling a McDonalds menu on the window.  In fact the resemblance was so close I suspect Photoshop may have been involved.  2 - just about everywhere sells beer.

So we entered, poured over the Russian only menu with the word lens app.  I couldn't stop laughing after finding "mother-in-law on hot coals", but surprisingly didn't order that.  We had an entertaining exchange with the bar manager as we ordered burgers and chips times 5.  No beef, only chicken - the exchange was in Russian, but he turned to the kitchen and says "pyat (5) chicken burgers"!

Sorry I should have mentioned a third note about ordering - they quite often don't have what you order.  Interestingly the shop window had 4 types of beefburger on it but none available!

And then the beer caught our attention.  What are the odds of walking into a place with several international ales on tap! London Pride, Theakston!  We settled on a couple of German beers while we waited for our order.

Mmmm...hot chips!

Mission accomplished.  Nat (and Matt and Laura) enjoyed their hot chips and the chicken burger.  Perfect anniversary - minus the hospital bed and copious amount of chemicals being pumped into her body.

Nausea has been quite a common symptom for Nat these last few days.  Dr F says is completely normal with what is being administered.  She received anti-nausea medication which helped a little.

Chemo complete!

Wednesday - Rest day.  I arrived a little later. We decided to walk again, but the combination of rain and dropping into the shops to grab some supplies delayed our arrival.  Its not cold at the moment, but it is miserable.  Overcast all day, zero sun.

On arrival Nat was in need of a hug.  She is really feeling it.  Very fatigued, no appetite.  The smell of any food was enough to make her dry reach.  I spent most of the day watching her sleep whilst catching up on work email, or intercepting the dinner lady to stop the food entering the room and minimise the smell.

Again Dr F visited.  In his usual reassuring manner helped us understand that, whilst its not beer and skittles (for Nat at least), it is normal. Later on in the day, her vision went blurry, but after a good sleep and a protein drink she bounced back.

I tidied the room under close supervision (with no answering back as now is not the time!) - all in preparation for tomorrow, for tomorrow is B-Day.  That's right, the stem cells are going back in and Natalie's immune system will be born again!

Can't wait!

And still more Chemo...

Day 14 & 15

I know I ramble most of the time but the brain is not really working that well at the moment so this one may be significantly all over the place and for that I do apologise!!!

Have definitely slowed down even more the last couple of days, the pep in my step is just not there.  I may struggle to find the words to get out about the last couple of days but I'll give it my best shot.  I think I've been really strong so far. I love talking to Isabelle & Sebastien and Mum and Dad everyday, they are being so well looked after and spoilt rotten which I don't mind one bit.  They seem to be coping so well, they are such strong beautiful kids but I just miss them so much!!



Chemo - day 2 of 4

Sunday - Chemo (day 2), was a bit slow getting started today, not as many staff scheduled on the weekend but they still do such an amazing job.  Talked to Dr Fedorenko about the woozy feeling the first day so he is getting anti-nausea for me today, much better!  Still feel off but not as bad as first day.  The nurses just seems to run all day with not a lot of extra orderly help on hand, please be patient with them if you come here as they are just lovely.  I used my Google translate to say "thank you so much for looking after me today" and got a beautiful smile from the nurse.

Hot Chips and Ice Cream has been my craving - unfortunately hot chips (close by) are not easy to be found and it was raining so ice-cream was off as well..  The food has been fine most of the time but during 'chemo' it's not always what you want - the fussy fiend is definitely in town and nothing seems to take my fancy at the moment.  Did manage to get through the 2nd season of Girls...



Saying goodbye to Irene

Also managed to get updates on The Block (thanks Trudes), another of my tv shows I love and knew I was going to miss the end of, well that was really not exciting peeps!  So sad for them, especially my faves Michael and Carlene, Michael made the whole show!!

I was sad to goodbye to my new friend Irene.  I'm so happy she is on her way home to her new life with her family!

Monday - Chemo (day 3) up ready early and showered hoping for an earlier start on chemo today but Anastasia paid me a visit to say it's time to move up to the 3rd floor so pack your things slowly my dear and we will move you about lunchtime and then chemo upstairs.  The one morning Paul decided to have a late start and come in at lunchtime but that was all okay I had plenty of time to potter around and pack my bags, easy enough and he arrived at the perfect time to head upstairs. 

My new room - with visitors and nurse!	Isolation rooms have an internal door for germ control
View from hospital corridor into my new room	View from my room door into the corridor and nurses station

Chemo gets set up quickly and I'm hooked up- a new lovely nurse, they are so efficient and I will continue to say this again and again as I feel so privileged to be here and so happy that the staff is so amazing...  So Paul gets to  be bossed around and unpack in the new room!

So the significance of moving upstairs to level 3 is that this is where the isolation rooms are located.  I will have my transplant in this room (on Thursday I think, very exciting!) and then when my levels drop will be isolated (locked up) for 7-10 days.

Out and about around the beautiful Hospital grounds

Managed to get outside today for some fresh air and it was lovely.  I think it was about 15 degrees so a beautiful day.  I've not been outside much but have been able to have a window open in my room, come isolation there is no window open and no outside, I've always thought I'd handle it just fine as I'm quite content with my own company but I think I might be in for a rude awakening.

 Paul and fellow patient Bjorn

Paul couldn't help himself - another lift shot!

Paul went on a hot chip hunt but none found to close so it was the pizza again..  It was good, but man am I missing food from home..  I've already given mum & dad orders for what I want to eat first day home - hope you are onto that Dad x

 Who's that looking through the window??

Final flush for the day

It's hard to go to bed early when you've had chemo late in the day as you then need to have a 2 flushes, which one was at 7pm and then the other at 11pm, all depends on what time you get started though.  Now I'm settled tomorrow might be earlier.

Finished the evening with a new Series - "Suits", thanks Rache, I like it!!

Last day of chemo tomorrow!

Chemo begins.....(day 1 of 4)

Day 13

Pretty slow start to the day, not enough sleep that's for sure.  With the new line in, even though the tubes are softer, I just find it really hard to come to terms to sleeping on that side.   Dr Fedorenko says it's find, move your neck, it's all good but my head just won't come to terms with it.

Paul also has a slow start in, the carers are constantly at our beck and call, looking in on the outside with love and only so much they can do to help us through this.  I'm so happy they have each other and it seems they had a little well deserved downtime together last night (late) which would have done them the world of good.  The emotional toll is so much about those of us here going through treatment that I think they are often forgotten as they watch us go through it all.

Starting Chemo - equipment used feed fluids

And now we wait for the first day of Chemo to begin.....  This is the HUGE!  There is a saying in the HSCT community "no chemo no cure".  This is what we want - halting of further progression and maybe possible improvement, so exciting!.

Bottles come in around 10.50am and so it begins.  6 bottles in total - another long time to hold the bladder yes "It's all about the wee!".  Bottles are comprised of 3 x Cyclophosphamide (chemo), 1 x Mesna (protect the stomach), 2 x flushing.  Should take about 3 hours.

Very weird feeling (I must say this nearly every day).  I don't really feel like reading, watching anything just drifting and talking to Paul.  Have a lovely FaceTime with the family, mum's fold washing, kids playing x-box, nice to just feel like I'm a part of it.  They had a great day out and managed to tease me with photo's of hamburgers and chips from Grill'd, if you know this place you will know my mouth was watering.

Didn't feel nausea in the stomach but I guess it was nausea in the head..  It felt constantly woozy, almost out of body.  That feeling where you have a hangover and you think you are okay but then you move a little and it's a big 'nope, not okay'.. 

Sam came down for a chat which was a nice distraction.  Talking about visiting during ISO and she cracked me up, I couldn't stop laughing, it's nice to laugh when everything is so serious!



Boiled apple and sliced beef

I had told Paul to leave early to get a good nights sleep but when it came to it I just wanted him to be here so of course he stayed and went out for a few supplies while I snoozed.  Hard to snooze though as I went into this semi-consciousness that just felt horrible, still the nausea I think.

I ate okay during the day which was good and after snooze decided it was time to watch Episode 1 - Walking Dead..  I've been encouraged to give this a go by a few people and thought it was time....

Very intrigued, really enjoyed it and have just found one of my new favourite lines in a TV Show that made me laugh and laugh and sorry I will have to share as this will bring back memories to those of you who encouraged me!

(possible spoiler I guess - sorry about that!)

This photo's for you Kristy!

"Hey you.....  Dumbass..... Yeah you in the tank, Cosy in There?"

Makes me laugh again and again just thinking it..  It's the little things that are great distractions.  That and the vegemite on premium biscuits last night, man were they good.

Another flush at 6pm - Paul waited to make sure I was okay from that one before heading off for the day..

Now to distract myself until the 11pm flush as I don't want to sleep before that.  Thank god for Internet, Facebook, TV..  Started Series 2 Girls - didn't want to overdo Walking Dead all in one day.  And finished with the vegemite biscuits, oh did I already mention them - god they were good.  Really good hot chips would be nice to - Paul hasn't found them for me close by yet!

11pm flush, bit more woozy even though it's only flush..  Try to sleep, Try to sleep, it's not going good, sleeping pill, Try to sleep, it's going to be a long night...  Good luck in the marathon Trudes xx

Tired!..... That's a freaking understatement!

Day 11 & 12

Thought I had better catch up on the last two days since I'm about to start day 13 which is another significant moment but I can't really write about it until I've filled in the last two days, just have to try and switch my memory on as it's not really working so well at the moment..

I think I barely finished the Day 10 post as I was exhausted well I guess that's exactly how the next day started.  I actually thought I felt pretty good Thursday morning to begin with but that didn't last very long.

No caption needed!

One of the many symptoms of MS is fatigue, I'm talking extreme fatigue and, you feel like you've run a marathon when all you've done is have a shower and this is after a full 8 hours sleep.  My usual mornings are all about my kids (don't get me wrong, it's exactly what I want them to be about) and by the time I've organised them and taken them to school I usually get home drag my arse up the stairs and collapse until I'm ready to try and do something for the day, and that's if I can..  I think (and please feel free to correct me if I'm wrong) that fatigue is actually one of the most common symptoms of MS..  Most of our other symptoms are so very individual and widely varied but I think most of us do suffer from fatigue and it's also that horrible thing which no one can see and it's really hard for others to appreciate (for which I don't blame them)..  When someone with MS says they are tired (or fatigued as I'm told we should say), it's not the usual overworked/sleep deprived it's dead on your feet exhaustion..

Anyway as usual I digress!  What I think I'm getting at is I'm always tired/fatigued, it's a part of what I deal with all the time - well this last two days has been in another realm of fatigue for me.  I've been hardly able to stay awake, only really to eat, drink, toilet.  Thursday was the worst, I could hear people come and go and talk but I just couldn't stay awake.  I really wanted to be able to go upstairs to celebrate Aaron & Troy's "New Life" party as it's so significant so I told Paul I needed to shower.

BIG mistake....  the shower that is....  Dr Fedorenko had been in to check on me, blood pressure was good and he took my bandage off my neck and that had healed up nicely so I was able to have a proper shower.  Paul helped me in and about 2 seconds later that woozey feeling came fast so I lowered myself to the floor, not good, really not good, thank goodness Paul was outside the door, finally got to stand up and Paul wrapped me in my dressing gown and managed to walk/carry me back to bed (not an easy feet for him being the size I am!).  Lucky no-one tried to visit, would not have been a pretty sight!!

Paul says I told you so, you didn't need a shower, and yes he was definitely right..  More sleep, more sleep.  New life party scheduled for 4pm so Paul gets a wheelchair so we can make it upstairs for that.

The "New Life" party for Aaron and Troy is beautiful to be a part of, I'm just so happy for them!!

Can't stay long as I, yes, need to go back to bed.  Now the neck catheter is out I'm looking forward to a great nights sleep, which I got..

Friday - Feeling a little better although maybe not, still exhausted.  About to try and shower and the nurse comes to take me for my next catheter, false alarm, she'll be back around 12pm.  Manage to get showered this time although make Paul stands guard at the ready just in case, still feeling unsteady but not fall down like yesterday.  Then, yes, back to sleep.  About 1pm we head upstairs for the next catheter, this ones not so bad 'they say'.  Matt goes first, I don't get to see his face on the way out so not sure about how he went, I'm not feeling as nervous as the first one but I still am quite a bit..  

New neck catheter in - Chemo starts tomorrow!

They ultrasound to find the best vein (so I'm told), some people have had what I believe they call 'subclavical' further on your chest which is apparently more comfortable, also these tubes are softer so should be a bit more comfortable than the other, but you don't get to ask where you'd like it, it's about the best position.  So from the pushing and what I assume is the ultrasound mine seems to be going in a similar position to the last one, here we go..  Can't say it was that much easier than before, still quite uncomfortable pressure and the feeling of something being pushed into your body, a bit queezy, and once I sit up still feel like a stiff neck that I can't move - not as heavy as the last though.  What I can say though is that Anastasia held my hand once again making me feel at ease and the doctor and nurse are so very lovely and professional that I don't have any worries about the care.  The unease is really all in my head!

Off for a quick x-ray and thankfully everything is in place.  I'd hate to have to go back in for it again although I'm sure it must happen on the odd occasion although maybe not I don't know!   

I'm a bit grumpy this afternoon, think things might be catching up with me..  Trying to stay strong but it's feeling a little bit hard today..  Not looking forward to the night ahead as this new catheter is really not feeling like it's the sleep accessory I needed..  Might try Game of Thrones to take my mind off it!

Chemo starts tomorrow!!

3 Million, but who's counting - oh that's right, ME!

Day 10

This is going to be a brief blog, well as brief as I can probably get since once I start babbling away I don't seem to know how to stop typing!  I know Paul updated the FaceBook page to let you all know results which was great as I didn't have it in me to type a single thing after yesterday but looking at the blog it doesn't seem right if there is just no entry for Day 9 so here's a few highlights!!  It's a bit of a blur and I'm still completely zapped so it may or may not make sense...  Lets go for the dot points!

• 3am - last of the stem cell injections (yay - not that they hurt to much but who likes being woken up at 3am in the morning, not me...)
• 6.30am - Not a good nights sleep but time to get up so I can have a quick sponge bath and a cup of tea before it's time to get hooked up again
• 8.30am - Dr Fedorenko comes with the amazing machine and I'm hooked up again for another 5 hours.
  
• While away the hours again with FaceTime to kids, reading and movies and being fed and watered by my lovely husband.  Very tired but it's hard to snooze as you don't want to move to much.
• Finally finished at about 1.30pm and Dr Fedorenko says all is good and we'll find out numbers around 4pm.
• Hungry and guess what's on the menu for 2pm lunch, yes the favourite, fish soup and tongue - what a celebratory lunch!!

  

  Fish soup & Tongue! (Matt's favourite!)

• Paul pops out to buy pizza - yummo!!
• Numbers are in and I've got close to 3 million stem cells which is fantastic news - happy dance everyone please for me!!
• Now the jugular catheter can be removed, a lovely nurse comes in to take it out and Anastasia talks me through it (I hold her hand again, bless her, makes me feel safe).  Bit scared about having this removed but it's not so bad at all, a bit of pressure and weird feeling but I'm getting used to those, keep pressure for 10 minutes and don't move for 30 minutes..  Very exhausted and so drift off to sleep for an hour.
• All I can manage now is food (yes pizza), water, staring blankly at a movie and I need sleep.  The catheter is out, no injections tonight, sleeping pill in order, oh this is going to be a lovely nights sleep!

That's about sums it for the day so now I haven't missed Day 9!!..

What a day, What a Result!  We have 3 million Stem Cells ready to go, yippee!!

I read all the beautiful messages on the FaceBook page this morning where Paul had posted and they made me cry...  I'm always overwhelmed at the support you are all sending our way.  We are feeling so loved and cared for and I love reading everything that has been written. xx

What a Big Day!

Day 9

Not a lot of sleep last night, least so far I think.  Last night of stem cell injections at 11pm and 3am and having the neck catheter in didn't make for finding the most comfortable sleeping positions.  Stayed up watching a movie to get me past the 11pm injection - August Osage County - great acting, not the most feel good movie though I must say!  That took me to past midnight when I could have a quick FaceTime with the kids to say Hi on their first day back at school after holidays.

Got a couple of hours in and woke at 2.30am - Thinking, Thinking, Thinking about tomorrow - it's Apheresis, that's a big day in this process that's for sure!  Very exciting and daunting.  Bet's on with Matt as to who can produce the most stem cells in a day - 2 million is the goal and tongue is on the menu for the looser (not that I'm going to eat it but don't tell him that!!)..  It's just a bit of fun as I'm not sure of if there is any rhyme or reason as to who gets them in one day and who doesn't, just seems to be a bit of a luck of the draw..




The Machine!

3am injection, still can't sleep, finally get a couple of hours between 4.30 & 6.30am.  Dr Fedorenko said he would be here around 8am and I wanted to have a cup of tea (and a wee) before it was time to put on the nappy and not move for 5 hours..  The nappy (Tena is my preferred option), is just for backup since you can't move - safe bet I'm thinking.

Dr Fedorenko is right on time at 8am with the machine that's ready to collect my stem cells.  Paul arrives nice and early as well so he's here for me the whole time (very happy me).  All set up and he's back at about 8.45 to start it up.  No moving for about 5 hours - probably already said that!  Things seem to start off okay but then machine starts beeping, Paul has little panic, Dr F comes to check it out, no problem.  This happens about 3 more times over the next hour, seems to be a small hiccup that is rectified easily and then the next four hours go by. 


Bye Emma!

 
Emma is leaving us today to head back to her family.  It was so lovely to spend some time with her here and I'm so excited for her to get home and begin her recovery.  We will definitely see each other again x

Apheresis is described on my HSCT page if you'd like to read up on the process that happened today - pretty fascinating!

Thank goodness for my Kindle!

 My results

It's a long time to stay still but Paul is my beck and call boy for the day and keeps me fed and watered, he's a keeper!  And I manage to while the time away on the computer, read and watch some TV..  By the time the five hours are up I'm so ready to move and wee!!  Yes the nappy was a good back up but the brain definitely isn't ready to use it!



Time to blog!

1.45pm all finished, unhooked, Dr Fedorenko takes my blood pressure which is good and I can have a rest until some steroids after lunch.  Yes, finally time for that wee!!  sorry maybe to much information today on that subject but it's all a part of it..  Water needed, very thirsty and ready to relax and have a nice sleep for a couple of hours...after all I have had 8.2 litres of blood removed and put back. Dr Federenko said that I'd have around 4.5 litres of blood, so all of my blood has been cycled twice!



So that's what 1.6M stem cells look like

Numbers should be in around 5pm so drum roll please while we wait...................................................................................!!

And the answer is 1.6 million -oh well a little short of the 2 million target, but Dr F tells me I'm a champion anyway. Round 2 tomorrow!



Not so Scary after all!

Day 8

Today started again with the early morning 3am injection, couldn't get back to sleep so downloaded my Woman's Day to find out the goss on The Bachelor, very disappointing story - not enough detail, sounds like he turned out to be a big dud!!

Got a bit of sleep afterwards which was great as it was well needed, still awake by 7am though.  The lovely Anastasia popped in to let me know what was happening today, goodness this girl works hard, I'd already heard people sing her praises and let me tell you she deserves them all.  Dr Fedorenko also pops in to let me know what's happening, he also so very busy but always gives you the time to answer any questions you have and make you feel at ease - yes I will probably continually bang on about how wonderful these two people are as they are!!

Another Aussie, Prue, arrived today.  Had a quick chat with Prue and her mum but I was feeling quite uncomfortable so had to go and lie down.

Today was the day I was a bit scared about - no actually - a lot scared about.  It was time to get my catheter jugular line inserted ready for Apheresis (stem cell collection).  It's different for everyone it seems, some have struggled while others haven't, the thought of it just made me feel queasy and it really doesn't look that appealing either!  Paul isn't allowed in the room but Anastasia will be so I ask if she will hold my hand - "of course I will my dear, I will be with you", she is so calming.  Off upstairs, Matt & I will both be having it done, he's also a bit nervous, I go in first. 



A few minutes after the jugular line insertion

The doctor and assistant are also both gorgeous Russian girls and very lovely.  I lay on the table and I have to look to the left out the window.  Anastasia comes in and holds my hand the whole time.  They all chatter in Russian and Anastasia lets me know they are talking about general things, I still feel nervous but very safe.  The anaesthetic (which I was dreading) was really not that bad, just a bit of sting, pressure when they put the tube in and a warmth spread across my chest.  Anastasia told me to stay calm and breathe normally and I just concentrated on the breathing which helped so much, I wanted it to go smoothly and work the first time so keeping calm was definitely the thing to do.  At the finish there is some pressure, I guess to make sure it is in place, but it wasn't too uncomfortable.  The stitches hurt a little as I could feel them a bit and the pulling to tie them off but again nothing overly concerning.  And then it is done, they help me sit up and that is very weird, it feels quite heavy in the neck and you feel like you can't turn your head.  Feeling like a bit like a princess at the moment so need a bit of a cuddle from Paul.  Matt's turn!! 

When Matt is finished we go upstairs for an x-ray to make sure the catheter is in the correct position - all good for both of us so that's a great relief!  Not so Scary after all!!



Fellow patient Aaron cheering me up!  

Still feeling like a bit of a Princess so head downstairs for a rest.  Feeling a bit of pain (think from injections) so Anastasia organises the nurse to give me some pain relief..  Expecting an injection in the bum but no, now that I have this amazing neck accessory the drugs can go straight in there.  Bit hungry as I wasn't keen on the morning tea today and Jenny had asked if there was anything I needed when they went out, Pizza was my answer and boy did she come through with the yummiest salami pizza, thank Jen xx  It's quite weird to eat and drink now as it's like you feel everything going down the left side of your throat..  No problem, just a weird feeling.


Feeling so much better after some sleep

Sleep time and as I close my eyes I see Paul snuggling up on the couch as well.  He's my rock as I've mentioned before and I couldn't be doing this without him, he's burning the candle at both ends as well and I couldn't be luckier to have him here with me!

That's about it I think.  Chat with Emma, love our chats, will miss her when she leaves tomorrow but so happy she is on her way home to see her family and start her next phase of recovery.  Nice stew for dinner, time for Paul to head off and time for a Skype with Irene, we could talk all night, she's so easy to chat to!

Big Day Tomorrow - Its time for Apheresis!! 
(time to try out the Tena's Trudes!!)