There's no place like Home!

Sunday 9th November 2014

Day 0+24

Okay, where do I start!  I thought I'd do an update each week of where I am at, both for myself and in case anyone else is interested in how I'm doing.  I also thought these would probably be brief updates but I already have a million things running through my head as to what has happened in this 1st week home that I may go on a little bit more than expected, for that I'm sorry!!  No I'm not really, I think I've finally come to terms with the fact that I like babbling away my thoughts in writing, that only took me 30 days to figure out!

We landed home last Friday morning - great flight home, love Emirates and love flying Business Class, OMG it's amazing, not sure when I'll get to do that again but I kind of think I deserved it under the circumstances!  On all of the trip we had used 'wheelchair assistance' since it's too hard for me to walk very far at a time.  Everywhere was amazing except when we landed in Australia, no wheelchair waiting - not happy, exhausted, had to wait about 15 minutes for one to arrive (long time for me standing) and I was not in a good way.  Wheelchair arrived and the ladies were lovely and swept us away down to passport control and thankfully into the "fast" lane (wheelchair/crew) - although not so fast lane as it still took about 1/2 hour, I was feeling good at the end of the flight but not good now,  I'm feeling like I'm going down hill fast.  There's seems to be no air-conditioning on, I'm hat on, mask on, hot, people everywhere, and I can hear them coughing - get me out of here!!  And of course I'm getting more excited about seeing the kids as I know they are just through that door way over there, hurry up and get me there!!  The security staff finally get us through passport control customs, help collect our bags and through customs quickly and we're through the doors and there is our family - the kids run over, lots of tears everywhere, quick hugs with the kids and Mum & Dad, but no time to stop, the Emirates driver is there and ready to whisk us away so the kids come with us and Mum and Dad head off to meet us at home.  Thank goodness we live where we live, within 15 minutes we are home - now I can give everyone a really big cuddle!! Have I mentioned yet how much I love being home.

The kids had the day off school which was lovely although they did have to duck out as they both had music examinations.  Worked out quite well as Mum and Dad were fully organised to take them of course and it gave Paul and I a chance to have a sleep.  I zonked out pretty quick for about 2 hours and woke up with extreme pain in my knees, nothing I'd had before and I could hardly move.  Called out for help to no avail, Paul was OUT to it, thought I must have been left alone, I was sure he wouldn't have gone out..  Finally got his attention, of course he was just as exhausted as me.  Not sure where that pain came from but it made it difficult (more than usual) to walk for about the next 24 hours as it gradually reduced.  Haven't had it again thank goodness.

Sorry, this could go on and on if I only do this weekly and tell everything about my whole week!  Can't stop me once I start!

We have a lovely big chair in our lounge room and this has become my base.  It's in the perfect place as I'm part of the lounge room, kitchen, dining room and can interact with the whole family and be really comfortable which includes falling asleep at any given moment at times as well.  I've set myself up with everything I need around me and at any time that I need something as soon as I move Paul, Mum or Dad are on to it! Sometimes I do retreat to the bedroom if I need quiet and to get horizontal but I have no complaints there.  While we were away Mum and Dad did a million and one things to make sure the house was clean and ready for which we are so, so very grateful and included in this was quite a lot of work to our bedroom - it feels like a brand new room, so very comfortable and peaceful, I just love it!!  

Cuddles with my boy

Even though I can't do much at the moment, which is fine as rest and recovery is what I need, it's so nice to be around the normal daily routine of home.  I'm awake to see the kids in the morning, Mum is getting them ready but I can still be here to talk to them.  Can't get enough cuddles from the kids, 5 weeks was a long time to be away from them.  Sebastien kisses me at any opportunity he can.  They are being so good with the cleanliness, washing their hands diligently and as soon as they get home from school they change their clothes and wash up and then straight to see me for a cuddle and tell me about their day.

Mum is living here all the time which is great as we couldn't do this without her.  Dad was as well but their cat didn't cope in the cattery so Dad now comes for most of the day but goes home at night, we miss him at night but we can't have the cat here so the cat needs him too!!.  We are so very lucky to have them here as they do all the running around for the kids and although Paul's had this week off to settle me in he will start to work more next week from home and then be back to the office the week after.  

Did someone order room service!

Food - haven't stopped eating since I've been home, I mean a lot of eating.  I have to careful of what foods I eat, you could compare it to how you would eat while pregnant with a few more restrictions on top of that - there's no way I want to get any kind of food poisoning as it could be life threatening.  No eating out for me for a while and definitely no take out - really good home cooked food is the best thing for me and I am getting that in bucketfuls!  Paul has been cooking up a storm and has found he likes "The Thermomix"!!  he's made a myriad of things and he's a really good cook.  Mum also finally gave it a go and made a mean mushroom risotto and Dad's keeping me in scrambled eggs and he makes a mean cheese omelette!  Best I not rest on my laurels too long before I start physio or I won't be able to get off my comfy chair!!

Birthday time!

We celebrated Paul's birthday on Friday and although I think he had a nice day I think we need to make another Paul's birthday day since it's basically all about me in this house.  Of course I hadn't been able to do anything for him but he did somehow manage to get a beautiful new camera appear which he was very happy with - Isabelle & Seb must have nicked out to the shops with their credit card - very sneaky of them and they picked exactly the one he wanted!! 

Best I put in a "Health Update" I guess since this is really what this is all about!  I'm not sure how much I've said about this before, I know I've mentioned some.  The expectation is that the HSCT will Halt my MS and any additional improvements will be a bonus but in addition to that it can take anything from 6 months - 2 years to see the full benefit.  Also during the 2 years it will or can be a roller coaster basically of ups and downs on how we will see improvements.  We have great hopes of improvement and with our "Good Mood, Good Food and Good Rehabilitation" I'm sure we'll see it happen - just might take some time!! 

Currently it's all about resting and recovering for at least the first month.  Might do a little bit of light something but it won't be much, will make contact with the physio next week to come up with a plan of what and when to start.  I've been to see my Haematologist here in Brisbane this week who will look after me post treatment.  I will still see my Neurologist in a few months but it is the Haematologist who will be my main specialist now.  We are really happy with the one we have been able to get into, he does Stem Cell Transplants for Cancer Patients so understands my transplant completely.  He took blood work following the appointment and his secretary called within the hour to say the doctor was very happy that all my blood work is on track - great news to hear!

I'm also staying basically "housebound" for at least the first month.  No visitors to the house and I'll only go out to appointments if necessary and when I do I'll be wearing a mask to risk any chance of infection.  My immune system is compromised and will be for some time and we don't want to take any chances with this new opportunity.



One thing of note that I didn't write above about my health and I'm a bit hesitant to as I did say that things will be a roller coaster but I think I just have to say.....  my right foot basically has what you'd call 'foot drop' - hard to lift and doesn't do what it's told..  So when I sit on the couch with my legs straight out in front it usually just droops to the side, it's quite hard to hold up and keep straight, it is also extremely hard to flex towards me without a huge amount of effort - well it seems that it's not so droopy anymore and I can hold it up straight more easily and I can even flex it toward me with some effort !!  I'm not sure if this sounds significant in the way I'm writing it but it is of huge significance to me...  I hope it's real, I'm excited but trying not to be too excited, one of those weird feelings - lets just hope it's a good sign, I'm sure it is!!

Still can't stop watching the Gilmore Girls, think I got addicted in ISO.  Also think it's my safe show, lots of things not inappropriate if kids come in!  Anyone watch "Girls" - love it, very inappropriate, especially if your Dad walks in!  Loving catching up on shows I couldn't get, Wonderland, The Goodwife is back on and has anyone watched Madam Secretary, it's really good!!  Good thing I love TV hey- easily occupied!!

I'm sure a lot more went on this week and I could probably keep going but I think I've covered the most significant bits - time now for some of that chocolate cake Mum bought Paul for his birthday, it is good, I'm sure I can fit it in somewhere!!