Testing and Food!

Day 2

Testing....

"No food my dear, no food, testing first in the morning" says Anastasia before she leaves the day before. 

4.30am Why am I awake!!  Not sure why as I'm very comfortable in my room (or should I say suite), guess it's just getting used to sleeping somewhere different and the anticipation of whats to come.  Oh and I never sleep well really anyway as I can never get comfortable.  Paul has wanted to get me one of those "fitbits" or the like so he can track my sleeping pattern as he reckons I never have a good nights sleep - none of these things help the constant fatigue but hopefully that is on its way to being kicked out the door!

Do I give you all the details or not??  Well I'm figuring this is a blog to share but also our record of our journey so detail is what you will probably get!  Feel free to skip over the boring and or too lengthy bits, okay I'll get on with it..  So yesterday I was told that I would have a urine test in the morning which I thought I was going to have a couple of bottles left for me so I could do it straight away.  Ummm bottles not here and I'm up at 5am - waiting, waiting - doesn't come until 7am, long time to hold on but I managed!  Also with that comes the "swabs"..  Some Russian spoken, a bit of charades and I figure it out - Nose, mouth and yes I told you I'd give details, the bottom.  So you might think the bottom will be worse well let me tell you it's not.  The nose!  The long swab stick (or whatever it may be called) goes quite a way up, it's quick but brings tears to your eyes!

Matt and I get our weight and height checked, the nurse and Anastasia laugh, chat and laugh some more when the nurse tries to do Matt's height as she can't reach above his head (he is 6ft2").  Aaron and Troy has been hooked up to the machines for Apheresis (collection of stem cells), refer to my HSCT page for more information, and we hope they get big counts today.  Matt and I popped in to see Aaron and it was amazing to see the machine in action - that will be us in a weeks time!!

Anastasia finds us and we are off upstairs, it's time for the tests to begin.  First upstairs for ultrasound on chest and abdomen, the Sonographer was lovely and spoke some English,  then x-ray (I think it was full body), the Radiologist was Russian and she position my body where it needed to go and pointed it I need to change it - Anastasia was behind the glass on the microphone to tell me when to breathe in.  Back downstairs, bloods - about 7 viles taken, back upstairs for a gynaecological ultrasound (yes girls we are lucky)..  The Sonographer was so lovely again, I struggled as I can't hold up my right leg and she touched my leg and said "this is difficult, you lean on me".  Back downstairs and finally got to see Paul - no eating yet I'm told.  Quick chat and then back upstairs for breathing test (I would call it a lung function) and ultrasound of the heart, 2 more lovely doctors!

The hospital buildings are connected via long, underground tunnels

Apparently we are getting through the tests quicker than usually, Anastasia seems impressed, just a lucky timing thing rather than any credit to us!  Finally some food, it's midday, and Paul has brought me in those ham & cheese croissants, yum I'm starving and my breakfast has come and gone so good thing he brought them..  Croissant's, cup of tea and a chat with Paul (finally) and Laura (Matt's partner)..  Feeling exhausted might try and have a nap, Paul says I look freaky with my mask on so will have to share a photo of that sometime.  Nearly get to sleep and the lovely nurse pokes her head in the door to whisk me a way.  Dr Fedorenko also pops his head in to see if I'm okay, I haven't seen him for any length of time yet but he checks in 2-3 times to make sure I'm okay and happy.  After trying 3 different wheelchairs we find one that works and I'm taken through the underground 'maze' of tunnels to the MRI department.

MRI - if you've never had an MRI the main things are 1. It's "very" enclosed and 2. Very noisy!  I think I'm pretty tough and I've never really had a problem, don't get me wrong, I don't love it, but it's a necessary evil that I have to do..  I can usually fall asleep or drift off if I know my head is secure and won't move so that makes it bearable.  At home I think I'm only in it a total of 40 minutes, this one was a bit longer.  You don't have to get changed to go in they just said "no metal?", I was thinking no, showed him my rings and they were okay.  Get strapped inside and realise I've got my watch on so I press the button madly and wave my feet, take my watch off and it tries to fly up, shit I think I'll get in trouble - no problem it's okay.  So then I'm waiting for it to start and maybe 5 minutes go by and I'm thinking either these are really good "noise cancelling" earmuffs, the machine is super quiet or it's not happening..  It's not happening, they bring me out, tell me it's not working, then try again.  Another 5 or so and I'm out again, it's definitely not working.  Thankfully they have another so the wheel me around to the next machine.  Into that one, maybe 40 minutes in then they bring me out to give me an injection gadolinium, which gives contrast to the MRI, back in for maybe another 15 minutes then out to change bases that you lay on and back in for the spine.  Probably another 30+ minutes, had an almost panic near the end as it went quiet for a good 5 minutes and I started thinking I'd been forgotten - almost pressed the panic button but restrained myself and it started again.  Once I came out I could see 2 ladies on the screens behind the glass, I think they actually do a lot of assessment whilst you are in there rather than just taking the pictures and doing it later - now that's why it takes a bit longer.  Two nurses, that I hadn't seen before collected me and we are off down the halls to the tunnel again - they seem to talk a bit about which way to go (I'm sure you could get lost for weeks down there), hoping they know!  We get off the elevator and I recognise we are close - there is a conference room at one end of our floor which I had been through a couple of times this morning when empty, one of the nurses opens a door wide, realises there is a conference in progress shuts the door and they chat and laugh and laugh and look at me and laugh and I laugh, it's really funny.  Back up the elevator to the other side and down to our other entrance.  One of the nurses still can't stop laughing, it's quite infectious!!

I think I was gone about 21/2 hours, Paul was ready to send out the search party.  Lucky he didn't try as I'm sure he would have got lost through those tunnels..

The food comes at set times, 9am - breakfast (which is late for us early risers!), 12 - like morning tea, 2pm - lunch (seems to be the biggest meal) and 6pm - supper (a smaller dinner type meal).  I think I've eaten most thing so far, some needed a little salt and pepper, but otherwise tasty. Oh I didn't eat the cabbage (below) although the stew part was tasty.  Plenty of bread, it's served with almost every meal, boiled eggs are common and slabs of beef and cheese.  Nothing to complain about as even if you don't like something there is really more than you need.  Haven't wrapped my head around tasting the boiled apples yet, I've been told they are nice but they don't really look particularly appetising and look like they need a scoop of ice-cream with them!

The rest of the day a bit of a blur, I know we spent some time with our new friends here chatting a bit, such a great supportive bunch of people here, but I was pretty wiped out from the busy day, early morning - fatigue sucks!!.  Just made me think of Dan & Maz on B105 (radio station in Brisbane) they have this section that Seb & I listen to sometimes where people ring up and say things that annoy them and they don't want anymore, it's called "STICK IT IN THE BIN" - we often say MS - STICK IT IN THE BIN!!!  You have to say it loud and with a deep voice!!  Say it with me: FATIGUE - STICK IT IN THE BIN!!!

Sleeping pill action tonight - lets hope it works (oh, actually it did, woohoo, since I'm writing this the next day!) Wait till you see what's on the menu tomorrow!!!!

Dinner time - Day 2! Stew & cabbage