BMT + 88

HB:66

PLT:55

NEU:3.2

WHT:4.2

WGT:63.0kg

So it was up at 5am to leave home by 5.30am to get to Westmead after being at home for the week. I slept most of the way down to the hospital while Anth drove. We got to the hospital around 7.30am and then had to wait to get bloods taken which was about 8.30am by the time that happened.

I was in a wheelchair - we hired one locally last Thursday to get me to the Ed Sheeran concert on Friday night. My haem was low (as has been the pattern for a number of weeks). It is getting to a stage where I can barely walk 5-6 steps without starting to see stars and losing my breath. Going to the toilet in the middle of the night leaves me puffing and my heart beating like crazy when I return to bed. Along with this is the headache that continues - pulsing along with my heartbeat.

Ed Sheeran was good - We ended up with better seats than I had booked as I was in the wheelchair! We just really wanted to have the chair stored for us once I got into the seat but the very kind usher offered us a spot in the wheelchair section, so I could stay in the chair (more comfortable) and the view was much better than where our tickets were! We stayed at the Novotel down at Sydney Olympic Park the night - all piled into one room, but it was worth it at the end of the night to just be able to walk back into our room and go to bed rather than have to drive home.

Saturday we went shopping. I was in the wheelchair again and very much notice people getting out the way, looking - but trying not to look and then how badly retail stores are designed for people in wheelchairs! In the sketchers store, there was no way I could even get the wheelchair into the store let alone see the shoes they had on display. I got up to walk around but couldn't stay up for long as I was too tired and out of breath. Kids did alright shopping!!

So what else did we learn at clinic? My platelets had fallen again - not as much as previous weeks (thank goodness). They still do not know what is causing them to fall - so an ongoing mystery. My haem was very low (as expected) but I was already having the transfusion by the time we saw the Dr so nothing out of the ordinary there.

The good news out of the visit was I don't have to go back to Westmead for the near future. I am booked in to go to Newcastle for a transfusion before Easter and then the following week for the monthly clinic. It might be necessary to return to Westmead if I need to have more T cells transfused. They still don't know if I have residual leukemia cells (which was supposed to be what we found out from the last BM biopsy) so there is another one booked for the 11 April to try and see again and see if they can work out why my platelets are falling. So more waiting to see.

Apparently my new T cells are 'naive' - that is they are like that in an infant and have to learn how to 'behave'. I need them do some work and attack any residual leukemia cells but at the same time not attack other cells in my body (which is GVHD).

In the meantime, I am going to try and take it a bit easier. The last week has felt quite busy and although everyone tells me how well I look, I am not feeling great and there is a big discrepancy between what I think I can do and what I can actually do. I haven't unpacked yet. Last week I tried a couple of times to put clothes etc away but just moving from the suitcase to the wardrobe to hang up clothes was exhausting and I'd have to sit/lay down again after about 1/4 of the case and try again later. There are still 3 cases on the floor of my room and I'll get there eventually.

So happy to be home based again now and to be heading back to Newcastle for treatment.