Wow I cant believe I have been home a whole month now and its been 5 weeks since my transplant. I am definitely settled back in and starting to get back to my old life slowly and next week Joseph will go back to work so it will be a big change. It has been nice having him here but going back to work is essential and it will be nice to get back into our routines.

Thursday I started my antibiotic called pentamidine which is an oral inhaler. I had this at the RAH in the oncology unit. The nurses were all gowned and masked up and this reminded me of moscow and sent me to a happy place. The room was closed off and it was myself and one other patient who was also having her first dose. I have a bit of ventalin first to open my airways and lungs and then they hook up the pentamidine and I have to breathe it in for approx 20 mins (they say it gets quicker as you get used to it!). Then some more ventalin to finish it off. I then called into the ambulatory day unit where I used to receive my tysabri infusion and they told me they do the pentamidine there… was feeling nastalgic and sad that I could have been somewhere I was familiar but also glad I have a new chapter in my life and am moving on. The staff there were so pleased I kept my promise to go back and see them after and report on how I was. It was great to walk back in there and show them that it all went well!

Friday I had a big day sleep and rested most of the day. Obviously I needed it and it was good for what we had planned for the kids tonight, as we took the kids to Disney on Ice. I was a little hesitant in going but I masked up and was sensible about not touching anything etc and hand sanitiser is never far away. The kids and I had a ball and I am so glad we went.

Joe did the busy Saturday dance run again for me just to on the safe side. Then I had a visitor, my boss Irina dropped in a lovely a care package from my work colleagues complete with chocolate and a knitted beanie from my manager. Thank you CIS X 

In the arvo we took the kids to the local school so they could ride their bikes and play with the cool boomerang flying frisby thing we bought at disney on ice. Was cheaper to get one thing to share and that didn’t light up and I think we are going to have sooo much more fun with it. The kids loved it and I think Joe had just as much enjoyment from it too. We spent ages at the school playing and then made a quick stop into coles to grab something for dinner and the place got evacuated… argh people all got funneled through the exit, luckily I had a mask on!

We were expecting Dave and Emily for dinner when the door bell rang and it wasn’t them… it was Chantel and a lovely surprise it was. I had been hanging to see my bestie and was glad she was able to stay for dinner before heading out for the night. The night was great and 6 bottles of wine and some wonderful conversations later it was 1am and Dave and Em left. Felt so good and normal to have a night like this and I wasn’t even really that tired. I did however only have a glass with dinner and then a port a bit later.

Sunday I woke up fine and wasn’t really feeling like I had had a late night. I got up with the kidlets and then we headed to Tarryn’s Birthday. Was another wonderful lunch and afternoon with the family and the kids played so nicely. I was feeling the cold though, something that rarely happened pre hsct. Dani gave me a pair of socks and a blanket to keep warm. Thanks Dani x

I had planned on doing some things whilst mum took Dominic to Mainly Music on Monday morning, but both Joe and I slept the morning away.  Joe had a cold and I was being lazy. We didn’t actually do too much today except make a large batch of zucchini patties.

Argh now I am getting another cold! Its nothing serious, just a cold but I will watch it and make sure it doesn’t change. I hung around at home with Dom while Joe’s mum went to literacy groups, then physio before she came to collect Dominic to look after him for the day so we could rest. Well after Joe got home from some errands, I had my bloods taken and then went to the chemist where they asked if i was on the news? How weird! And I finally dropped off my income protection claim. Was a nice feeling to be able to take myself places and have some independence back. I may have also dropped into coles for some more wafers… shhh!!! Joes parents took the kids to auskick and to swimming for us and then stayed for dinner.

I was feeling quite yuck with the cold on Wednesday so I spent all morning in bed again and only woke for lunch and then phoned to get my blood results which are doing ok…
Leukocytes 7.52
Hemaglobin 109
Platelets 325
And then they told me my neutrophils were 6.02 I dont know why she told me this she did. Then we headed to my neurologist appointment. Many people might be wondering why I have gone back to him, but I am fortunate to have a neurologist who is happy to support me in my leap for a better life. He was very curious to find out all about it and to see me and make sure I was following up properly with Dr Lewis and doing all I need to be. He has given me the forms for my next MRI in Nov – 6 months after my one I had in Moscow.

Then we will be able to see if I have any new lesions or change. This will be one way of monitoring if hsct has halted the progression. The other factors will be the appearance of any new symptoms. Any improvement of previous or current symptoms will be a bonus and I am still not sure if anything I am experiencing is as a result of the treatment or just part of the recovery process but I am noticing the cold more. However it is winter and I have no hair lol. I am tired and have slowed down this week so perhaps the steriods are wearing off but I am still not sure.

From now on I think I will only post updates when there is something worth while sharing. I like using this as a diary so I will be able to look back and see how my recovery was. So I will see what happens next week lol. TTFN X