Month: September 2017

After a pretty good night (about 5 hrs broken sleep in between multiple blood tests, observations, toilet steps etc etc) the day started well.

Best shown by pictures:

1. Managed to convince the Physio team to put a warning notice on the dangerous gym equipment!
2. Finally got a Zimmer Frame
3. Claire’s lovely Moroccan meatballs
4. Pills glorious pills!
5. Minestrone – homestyle sure beats hospital any day!

I have learnt a few interesting things with this Chemo business – they give you a massive cocktail of drugs. 2 major Chemo Drugs (as explained previously in HIDAC + 3) but there are the wide range of “Antis” – we have been writing this down each day and now have the “Anti-Board” which lists the anti-ulcers, anti nausea, antiviral etc.

At last count there were 5 different pills to take in any one day and up to 7 different IV Drugs – although this vary day by day.  And on top of that there are up to 9 different “on demand” drugs such as cough medicine, and Allopuranol (for uric acid removal).

So on a not so good day you might be putting 21 different drugs through your body and of course the more volumous ones lead to bloating and a large fluid increase (still seeing up to 3-4 kgs extra in a day!)

But guess what the best drug so far I’ve found to lower temps and reduce pain is Panadol!   4 x per day and it keeps you sane!

1. Dougall managed to find some old and new family snaps to liven up the room. The whiteboards collect the daily medical information (blood counts, procedures for the day, new drugs added to the cocktail etc etc).  The Clock is an essential found by Claire – silent ticker!
2. I’ve finally made old age – Zimmer frame and nappy!
3. The nasty ugly ones are mine
4. Lots of napping in between drugs and drugs
5. And one benefit is the return to childhood of lemonade and other sweat treats – think jelly, custard, ice cream etc etc.

I can’t thank my darling wife enough for being (literally) by my side during the process. She’s been keeping one eye on me and the other on the medical staff, making sure everything runs as smoothly as possible.

This funny looking machine on is a platelet agitator which has been storing one of the many strange bags of liquid I’ve been putting through my body.

Having such a low platelet count means I’m constantly in danger of bleeding or bruising excessively from even the most minor injury. Had the first nosebleed today but thankfully it didn’t last too long.

The final prognosis from the Physio was “you’ve over done it” and it will take 3-4 days to get back to normal.  No major damage just a bloody sore calf muscle.

If you have a nice pic of yourself and me/Jan I’d love to add it to my Glory wall so email it on to me or Jan.

• Terrible night with a busy ward full of emergencies, buzzers going off at all hours and busy staff
• 2-3 hours sleep max.
• Calf was extremely sore
• Cannot walk on it/ put any weight on it (so I am now hobbling around)
• Emergency note on my door saying “likely to fall”
• Finished Chemo at 2am
• Started platelets and Red Blood Cells at 8am
• Ultrasound for damaged calf at some stage this afternoon
• Discussed ‘lumbar puncture’ with Jo. Set for the next two days, ouch!
• Another lovely lunch with the family

• Jo and Suzy visited early and were delighted with my progress
• Brain scan showed all clear!
• Chest X-ray showed all clear!
• White Blood Cell count (including Blasts) way down
• Red Blood Cell count climbing – after a couple of bags of blood
• Weight back to normal
• Spoke to Liz (the donor coordinator) about the bone marrow transplant process. First step “typing” my siblings Fiona and Tony.
• Professor John Seymour visited for 30 minutes to discuss progress on importing the FLT-3 drug from the USA
• Another casual day with family. Delicious Moroccan meatballs for lunch. Lots of messages from friends, only had time to reply to some of them
• Good phone call with JP
• Mum and Dad coming to visit on the weekend

(only downside to the day was a strained calf muscle due to spending too much time on the treadmill 60 mins instead of 20…)

Following a massive dose of Chemo my body reacted really badly.

• not much sleep
• temps 40 degrees throughout the night
• relief with IV injected paracetamol
• constant diarrhoea

Following my own proven business/ baseball principal of “three strikes and you’re out” after two early morning changes of bedclothes, I finally opted for “the man nappy”. Things improved throughout the day.

Other major items for the day included a 45 minute brain scan (looking for tumours on the brain) and chest X-rays.

Receiving lots of great messages from friends all over (including the NurtureOne centres from 4 years ago), thank you so much! It means a lot.

What a wonderful day! Family arrived bearing loads of gifts; socks and jocks and all things very colourful (t-shirts, shirts, thermal pants). But wait there is more… the kids secretly had gone to see DR One behind my back. I tore off the wrapping expecting to find another pair of socks, or maybe a singlet but to my surprise there was a brand new state of the art DR ONE

In a strange way this had been one of my best father’s days in quite a few years for the following reasons:

• The whole family together
• Lots of colourful presents
• Special piece of flying equipment to replace VH-KSH (much cheaper to run)
• No crumbs in the bed or nappies to change (more on this later)

The day drifted on without any great drama. Started the “Putting your business affairs in order” discussion with Jan.

• first night trying to sleep after chemo
  • awake most of the night with aches, pains, fever
  • 38-40 degree temperature
  • added 5kg of fluids/ body-weight overnight
  • difficulty breathing (on 10L/min of oxygen – more than top gun)
  • diuretic was added to the cocktail of drugs to fast-rack the disposal of fluids (toilet every 30 mins)
  • Everything gets measured here… (so you pee in a bottle every time)
• things improved markedly during the day
• 1 x Idurabacin for the day (off day for the chemo regimen)
• decided to give me diuretic to shed some of the excess fluid (what they give you, they want back)
• weighed in at 92kg in the morning after additional fluids given during the night to stabilise me
• further chats with John, Jan and Lachy about implications of participating in the drug trial vs special access scheme for newly approved American drug

• treatment starts using the cannula which was inserted in the Launceston General Hospital – (it travelled well in the TBM private medivac plane!)
• loaded up with drugs
• • anti-viral
  • anti-biotic
  • anti-ulcer
  • anti-emetics
  • and, of course anti-cancer (HIDAC+3)
• John informed us of a possible addition to my chemo regimen
  • US FDA approved drug
  • or a USA/Aust trial on  a newer drug both for the FLT 3 Variant of the AMML.
• Hickman procedure was finally done late that afternoon – it felt like a game
• of rugby in the theater

Some friends organised a box of fruit