Not the greatest week...

Tuesday 25th November

Day 0+40

I’m sure I probably said last time I posted that I can’t believe it’s been a month since my transplant, well today I say I can’t believe it’s been 40 days!! 
Haven’t really felt like writing lately, in fact I haven’t really felt like doing much in the way of electronics full stop which is a big call for me as I’ve been slightly addicted in the last 8 months.  Yes, you will have still noticed my presence I’m sure but probably up until today the last week have been a quick look and a quick comment here and there.  I’m also not good on the phone either, it seems to take it out of me to concentrate on a phone call and crowds.... well I don’t know how I would cope in a crowd at the moment – when everyone’s home at the once, which is only 6 people, I have a hard time keeping up with the conversations and the noise. I’m constantly telling everyone to stop, “one at a time please!”

The last week has probably been my worst week home so far. 

It started quite well with a visit to my Haematologist last Monday and the visit went really well.  We are lucky he is such a patient man as Paul and I have a bit of a meeting before we go and he lists all our questions on his iPad. The list was quite extensive this week, so as I said we are lucky he is patient.  Before we went in to see him we were sent for blood tests, which is just down the hall, and by the time we went in for our appointment he already had the results in front of him.  He was happy with them all, only one area was a bit low but he said that is very normal for this time in my recovery.  I have a nice lump under my chin that I was worried about (gives me a lovely double chin which fits in perfectly with the extra cheeks I have which I’m hoping is still from steroids and of course that just makes me look gorgeous with the bald head!)  Anyway of course I digress as usual – he said the lump under my chin is fluid in my saliva gland and that is quite normal.  Not attractive but at least it’s not problem so that’s a positive!!  Since I haven’t figured out my scarf/hat wearing and what I like, I decided to go with the bald look to the doctors – looked fine considering the mask and the aviators covered up most of my face!! 

Quick visit to the Dr - in disguise!

Oh and we caught up with a new friend who was waiting at the doctor’s, she is heading to Russia next year so that was unexpected and it was lovely to catch up for a quick chat..

From there the week went downhill.  I had a headache Tuesday and Wednesday which also came with a fuzzy thick head (which happens from time to time) but in conjunction with the headache was quite horrible – time to stay in bed.  My head often feels quite weird and seems to have trouble regulating temperature. Dr said this is quite normal as well.  The heats not helping at all of course, it’s quite hot here in Queensland so the air-con needs to go on quite early for me to be able to be out in the living area.  It doesn’t feel like MS fatigue and or flares that I need the air-con, it’s more the post HSCT symptoms are aggravated – not sure if that makes sense or not ?? 

I’m more tired at the moment, wondering if that may be because the steroids are gradually wearing off.  Hopefully that will help with me sleeping better, fingers crossed, as I’m still quite the restless sleeper and poor Paul is still in the study which he has now started calling his bedroom!
I’ve been quite emotional since being home and I cry quite easily but along with the tired especially come the tears and often, on those days and it can be all sorts of simple things that set me off to me thinking more than I probably should that can make it worse.  On Tuesday, when I had the headache, Belle came home with a present from a friend of mine which really set me off, actually I think it brought tears to most of our eyes.  I shall attach a photo and you will see why..  Thanks Rache & Clay, we just love it xx

So thoughtful - Thanks Rache & Clay!

Paul’s gone back to work at the office which I didn’t like very much but only because I was a bit addicted to having him with me all the time not because I needed him at home as Mum and Dad continue to look after us, which is just priceless and we love them for it!  We finally convinced Dad to come back and live with us and bring the cat as it’s not the same without him here..

Kids have 2 more weeks at school and I can’t wait to say “SCHOOL’S OUT FOR SUMMER”..  - hope you sung it in you head!!!

And Christmas is now exactly a month away – thank goodness for internet shopping!!  No Paul, don’t go and look at the visa bill just yet!!

Hoping to have a better week this week and hopefully start Physio which reminds me I better go and call them... 

Thank you as always for your messages of support and I’m sorry I’m not in contact much but I just have to ride this roller coaster as best I can xx