Background

This entry gives some background about the lead up to my diagnosis.

In early June 2017 I had a comprehensive set of blood tests for my aviation medical which I passed after a thorough examination in mid July. At the end of July we travelled to Whyalla, Perth, Kununurra and Darwin. Although we had a busy 10 days, everything felt pretty good.

Having returned from Darwin to Tassie in early August I experienced some lower abdominal pain for 3-4 days as did Dougall (some members of the family had experienced gastro).

The following weekend we flew to Wagga for some ProWay business. During this time I started experiencing night sweats and I also had one of Liz Dowling’s awesome green smoothies which I found to be delicious.  Liz lent us a book titled “Being Mortal” by Atul Gawande – a commentary on why we don’t look after our elderley and sick very well in the Western World – an interesting read!

Towards the end of August we flew up to Hamilton Island for a week of sailing with Paul Mara and a whole bunch of doctors – more than you could poke a stick at. I continued experiencing night sweats. I completed a free dermatological check up during the week without ANY concerns despite the fact that I had a number of weird looking small red skin blotches on my chest back and legs- they thought they were just some viral thing (more on this later) .

We returned to Tassie on the weekend of  26th August after a great week of sailing (our boat Helsal 3 won its class!). I had noticed a few bruises in unusual places but I assumed this was due to the sailing.

 

Sailing photo thanks to Ruth Bailey:

Whitsundays Sailing

 

Day 1 August 29th –  The Shock of my life!

Lindy from the surgery rang and the appointment was made for 2pm.

Myrle’s opening words were ” I have some really bad news for you”.  I had thoughts Hep A or B, maybe C, but she said you have Acute Myeloid Leukemia.  Well what to say?  For a moment I did think ‘Why me?’ but my thoughts quickly moved on to “what do I need to do?”

Myrle suggested with a tear in her eye that I needed to check into Launceston General Hospital ASAP.  I felt sorry for her as she was obviously very shaken with the delivery of the news and as I said it was a bit tough – I’d only met her once previously and here she was delivering the bad news!

Jan whisked me into town and I got checked in through Launceston ED where people came running with needles and tubes to collect blood samples.   We had discussed the notion of flying direct to Melbourne to check in at Peter MacCallum Cancer institute/Royal Melbourne Hospital but felt I had to start somewhere ASAP.

I’d sent an urgent text to my good friend John Preddy and awaited a call back to discuss best options.

 

Messages with John

At this point I knew I’d been diagnosed with acute myeloid leukemia and wanted to discuss with him where I should be going for treatment.

John Preddy

Spoke to John and flicked the results through. (For reference, a normal white cell count is between 4-11).

blood test

John’s response pretty much summed up the situation.

John 2

It all happened in a blurr….

  • checked into Launceston general hospital
  • phonecalls back and forth with JP acting as advocate
  • decided to go to Melbourne
    • highest possible standard of care
    • convenience for family and friends for visits during long treatment
  • John flew down to Tassie with Chris Cabot in Paul’s TBM for a self organised medivac
  • collected by son Lachy at Essendon aiport
  • 11pm arrived at Peter Mac who didn’t know I was coming
  • 11:05pm tried RMH who also weren’t aware
  • 11:10pm – 2:00am waiting in RMH emergency waiting room
  • 2:00am-5:00am waiting in emergency bed

Day 2- into Royal Melb Hospital Acute Cancer Ward (one of the best in Oz)

  • transferred from RMH ED to Haematology Ward 7B
  • Lots of tests
  • lots of forms, lots of paperwork, lots of people
  • met medical team
    • headed up by Prof. John who JP had made contact with the day prior
    • included Jo, Jess and Suzy
  • bone marrow biopsy in the beautiful new comprehensive cancer centre (Peter MacCallum).  They give you a local anaesthetic and drive a big needle with a hook into your pelvis bone.  Effective but not much fun!

 

Day 3 – Tests and waiting

    • More testing
    • Promise of a Hickman line 
    • Interesting conversation with Peter Haywood – Clinical Nurse consultant
      • he noted there were advantages to being in a small regional hospital like Launceston – things can happen fairly quickly without excessive delays due emergencies.
      • just as we finished this discussion, the Hickman line procedure was cancelled due to a backlog of work for the day!
Hickman Line
Fairly common for patients undergoing chemotherapy, a Hickman Line offers direct access to one of the larger blood vessels in the chest/neck compared to a standard cannula in the forearm. This offers advantages for drug/saline infusions and can also be used to take blood samples from. It is essentially a tube implanted through the upper torso and held in place by an internal balloon and some sticky dressings on the external chest. The implantation procedure is usually under local anaesthetic and takes 30-40 minutes.

1. This handy diagram is above my bed so the nurses don’t forget which tube to use!
2. My Hickman line

  • Skin biopsy – cut out the lesions that the Dermatologist at Hamilton Island was not concerned about and test them for leukaemia mutations.
  • Initial results of bone marrow biopsy
    • AMML not just AML
AMML
Acute Myelomonocytic Leukaemia is a type of cancer that originates in the bone marrow from a particular sub-type of white blood cell precursor cells. In healthy people, the bone marrow is the source of all new blood cells and so it is normal for cells to replicate and grow out from this source. In AMML, this normal growth process spirals out of control and the influx of defective cells can crowd out other healthy blood cells and hinder their usual roles in nutrient transport and immunity. Acute means that the cancerous cells build up quickly and, if left untreated, can be fatal in weeks or months.
  • During the week Claire had flown over from Perth and Dougall from USA (having only just arrived back there 3 days earlier for the start of his last year at Uni).
  • It was clear our kids wanted to be with me – which meant so much.
    • We issued jobs to each young adult to keep them busy
    •  Claire was to be in charge of Fashion and Food
    • Lachy in charge of the new Blog and IT requirements
    • Dougall was to decorate the room to be a homely place (given I’ll be here for months.)IMG_0933

Day 4 – Treatment begins!

  • 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

IMG_0759

Day 5 – No sleep for me

  • 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

Day 6 – Father’s Day

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

DR 1

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.