Day 6: Checking in
- wills627
- Sep 10, 2017
- 4 min read
I will start with my blood levels and weight for each post now, as I understand these numbers become 'all important' in the coming weeks. For those non medical and not familiar with the levels - I've put in what I understand of each of the measurements. Happy to be corrected.
White Blood Count (WBC): 1.6 (norm is 4 - 11)
Haemaglobin (Hb): 85 (norm is 115 - 165, but as I had a transfusion on Friday, was expecting it to be lot higher than this today - a bit of a shock to see this result). This what essentially carries oxygen around your blood - so this is why I feel puffed and tired.
Platelets (Plt): 40 (norm is 150 - 400). No platelets means blood won't clot properly and bruising is common. I am like a splatter painting by someone with grey/brown ink on a brush.
Neutrophils (Neut): 0.1 (norm: 1.5 - 7). Mine have pretty much been 0.5 and under since diagnosis so I have been 'neutropenic' for most of the last 2.5years. Neutrophils are your infection fighters.
Weight: 64.9kg
So, we throw the bag into the back of the car with last minute bits and pieces. I fully expect at this stage to be returning home - so it's just a quick goodbye to everyone and on our way, dropping dogs off at sisters house along the way. The call comes through that they have a bed for me!

We get to hospital and bloods taken, dressing changed, then off to another floor to have heart test. Stage 1 they inject something that attaches to the red blood cells which takes 20 min so we take the opportunity to grab something to eat - only to discover the hospital cafe doesn't 'make' anything at this time of the day (2.30pm). So it's whatever is left over...
Then back to be injected with an isotope that attaches to what they injected into me previously. Then 20 min of laying still while they image how effectively my heart pumps blood around my body.
Off to the ward then - about 3.30pm to let them know I have arrived, but informed the bed is not ready yet. From the conversation, I understand that they plan to start chemo tonight - again, not expected as on Friday we were told it would be too late to start it after my heart test at 2.00pm.
Anth and I sit and chat and are told many times, not much longer... By 5.00pm we decided to go and get some dinner as apparently the room still needs to be cleaned. We are conscious of time, so hurry through the meal and head back, realising there were a few things we should have picked up at the shops, but decide it can be done at a later time, as we shouldn't hold them up in the ward. We get back about 6.00pm - room still not ready - so we head out again (luckily the boom gate in the car park is not working, so the parking is not costing us anything) and we head into supermarket to pick up a few things.. and then get called to say it's ready.
So we rush back to head into the room and I start getting unpacked and organised...this is my home for the next month. All settled by 6.30pm.
Get a 'clarity' test - which is to test things like balance, confusion etc. Apparently this is going to get done daily. Things like walking heel to toe in a straight line - a bit like being on side of the road getting a sobriety test (so I've been told!). The one that gets to me is somehow hitting the palm of my hand with the ball of my foot and then swapping feet. Not sure I passed that one - I didn't realised flexibility was something they were testing for!!
Get briefed on mouthwash regime - which is:
* 1/2 Caphosol A vial + B vial gargled 4 times a day
* Nystatin squirt swished around mouth and swallowed after each mouthwash above
* Rivacol 10ml with warm water gargled at bedtime.
Anth gets frustrated trying to set up Telstra dongle for Wifi - but after about an hour, got there in the end!
Get given tablets to help with nausea (not that I have any yet) and a steroid, that apparently will have a side affect to wake me up. Not sure anything can keep me awake but here I am at midnight, typing away... maybe the eyedrops they put in are helping keep them open as well!
So, 9.00pm, a saline drip gets attached and by about 9.40 the chemo starts for the first time.
I'm getting Cytarabine via drip over 3 hours on day 1,3,5 and 7 and then also Idarubicin which gets pushed into line via syringe over 15 min - so 15 min boring the nurse with my stories of travel to Africa... captured audience and I could talk about Africa all day and night..
So here I am - it's been a long day and lots has happened and it's a bit hard to absorb what is being pumped into my body at the moment. I feel OK and not sure when that is going to start changing. I'd like to think I could remain feeling OK - but that's not really realistic - especially in reading the information sheet given out that goes through 5 pages of 'side effects'!
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