It's not easy but Life's Great!

Thursday 11th December

Day 0+56

Today is 8 weeks since I had my stem cell transplant – I can’t believe it, where has the time gone!  The saying “time flies” doesn’t always feel like it but when you look back I think we often say “where did that time go”.   I was accepted by Dr Fedorenko for treatment in March (the day before my birthday – best birthday present ever!!) and I was so excited, grateful and full of hope but at the same time I wanted to go as soon as I could and 6 months seemed like such a long time to wait..  In hindsight of course it wasn’t because it gave me plenty of time to prepare myself and my family and of course all of a sudden the time came and we were like “where did the last 6 months go”.   I knew, not long after I accepted, that I was blessed with such a short waiting time as the waiting time has now become much longer.  I hope this “time flies” for those eagerly waiting to go.

It’s been 16 days since I last blogged and I’m trying to find a word to describe the time and it’s just not coming to me.  Basically there a good days and there are not so good days...  During this time I think the steroids have finished their job in my body and that made me crash a bit but now it’s up to me and my new stem cells to get the job done.  I’ve had days where I haven’t wanted to get out of bed and cried at anything and everything to days where I’ve cooked and been on the treadmill.  Yes, I think roller coaster is the best description of what has been happening!  HSCT was tough to go through both physically and emotionally, that hasn’t stopped since being home it’s still physically and emotionally challenging and will be for some time – good thing I’m up for the Challenge!

We saw my Haematologist last week (actually we saw a fill in one as mine is in the US at a conference but he’ll be back to see me before Christmas) and he is happy with the way my blood work is tracking which is great.  I still have this mass under my chin and I was also worried about my thyroid.  Of course I’d already diagnosed the thyroid issue myself through Google and take note, don’t look up images of thyroid problems as there are some scary pictures to see!  Anyway, he said it is slightly enlarged so best to have an ultrasound on the chin and throat.  The mass under the chin is nothing sinister, just need to wait for it to go down and the thyroid still needs some additional investigation through bloods so will find out how that’s functioning when I next see him.
I know I mentioned last time about my foot flexing better but not sure if I mentioned my leg raise??  I used to have extreme trouble lifting my right leg and could only raise it about 10cm off the ground and even that was extremely hard.  One day I walked to the bathroom and without thinking raised my legs higher than walking height and the right obeyed, so surprised, and couldn’t wait to show off to the family.  I think there may have been a few tears all around!!  Little steps will hopefully lead to leaps and bounds!!

Off to the physio

I’ve been to my Physio and she was impressed with the couple of things that have improved already and has given me some exercises to do at home.  I find it a bit hard to do every day, not so much the exercises but due to still struggling with being tired and emotional but I’m doing the best I can.  Walking was something that she wanted me to do each day and it’s not something I’ve not been good at in the past, also her preference was outside.  Well that’s been a bit difficult as it’s so hot here and I also can’t be out in the sun due to chemo and medication I’m on.  I have though had a go at the treadmill a few times and yesterday made it to 1.3km, it was slow and steady but I was very proud of myself for doing it!


Couldn’t quite finish this yesterday as I got distracted and then I did too much and crashed out so now it’s actually Friday - Day 0+57...

This week I had my first visit to my Neurologist since I’ve been home.  He was supportive of me going to Moscow and was very interested to see me home.  I guess I was thinking he would only be interesting in how I was going from the neuro side of things (if that makes sense) but he wanted know all about how the treatment went and what the hospital was like, he also looked over my blood work and he noticed my thyroid was enlarged.  We also had a chat to him about how to go about find a rehab specialist and he is going to make some ‘calls’ for me.  Overall another great visit – Feeling very blessed with the specialists who are looking after me..  And of course the one, Dr Fedorenko, who made it happen for me!

We’ve still kept to ourselves mostly and I haven’t ventured out much, just visits to the doctors, physio, wig shopping (oh yes I did!) and I also managed to go to a school event as our son was receiving an award (but I nearly fell over from exhaustion by the end of the evening and it only went for 1 ½ hours!). We have started having some visitors which has been lovely although I still get quite tired and have some pain in my sternum so with that and my thyroid issue which seems to get aggravated when I talk too much I can only really manage visitors for an hour.  I also struggle with noise and  to many people talking at once so that kind of limits any parties at our place for Christmas!

Well I think I’ve hit the wall for another day and probably babbled on again too much..  Even though this is hard and I get upset and frustrated some days I’m still Positive.  We can see improvement in some areas which is amazing! 

Life’s good, no I should say
Life's great !!

xx