Article for AML News

Sunday was a nice quite day with our only visitors being Knox and Cate Heggaton from Tassie.  Knox leases our farm in Tasmania and does a fantastic job keeping the livestock in good health and the irrigators functioning!  He is a long-time friend from the 1980s when working on my Dad’s farm as a Marcus Oldham student.  Cate is gorgeous and runs her own woollen wares shop in Launceston.  She has kindly offered to look after our pet corgi Sparky (and in fact taken the role of surrogate mother from our ex neighbour Jenni Butt – sorry Jen!).   Sparky has taken to the healthy food in Cate’s garden!

Monday was also a quite day but we managed to catch up with Jason and Caroline Ennels at their Café in Malvern.  These guys are keen golfers and spend as much time as possible on the course.  Caroline is a long-time friend from our university days at Trinity College in Melbourne.

Tuesday was another day of tests – this time a kidney function test.

The lead consultant on the transplant team, Amit Khot has been concerned that my kidney function is not up to scratch as a result of the Ambisome treatment – a side effect of this drug which has been used to treat my lung infection.  It seems that there is a linkage with all treatments – one will affect another and this might also affect something else.

The tests involved a nuclear medicine tests over a 4.5hr period.  Initially a nuclear isotope was injected into my blood stream and then samples were collected hourly.  The red blood cells separate from the plasma and this is then spun off in a ‘Wells’ machine, with the nuclear sample being counted to see what has been screened by the kidneys and what is still left in the system.

Plasma separating from red blood cells

The Wells machine to count the isotopes

Under the scanner for kidney function tests

The final test was a Scan of the kidneys after injecting another isotope.  This one lasted for 20 minutes and it is possible to see the concentration of the nuclear particles in the kidneys and the bladder.

Following these tests we had a meeting with Amit and on his recommendation the Stem Cell Transplant (for bone marrow) will most likely be delayed until early January.

Amit will wait for final test results on Wednesday morning (en route to Altanta, USA for a haematology conference!) but at this stage this is what it is looking like.

So my plans change again! It now looks like the next round of Chemotheraphy will start after Christmas with the transplant on or about January 4^th .

In one sense this is slightly disappointing but the positive is it gives me a chance to spend some time with family over Christmas, which I was not expecting.

Thursday was a pretty quiet day with no hospital appointments at all.  In fact without needing the IV Amibisome treatment HITH have discharged me from their care.  With this process there is no paperwork (unlike being admitted).

For lunch we continued our restaurant crawl around Melbourne and had lunch with Rob Morrison, one of our colleagues from our ‘caravan park’ investment days. Rob suggested Chin Chin which was absolutely fabulous!

On Friday I had planned to go back to HITH to have the dressing changed on my Hickman line, but when I rang HITH, the nurses thought it would not be possible as I was no longer their patient.

Probably typical of a big hospital (or any bureaucratic organisation) the communication lines had broken down – I was no longer a patient of Peter Mac, Ward 7B or HITH but did not know this!  No one had bothered to communicate this to me.

What to do?  When in doubt bake a cake!  Yes that’s what we did – Jan pulled out her favourite recipe for choc chip muffins and set me to work baking.  So upon arrival back to HITH on Friday afternoon I presented the staff and nurses with a big thankyou present….and then asked to have my dressing changed – which we managed to fit in during the afternoon.

On Friday afternoon I finished off the allergy testing that had begun last week.  As I had no allergic reaction on my skin from the needles I was now asked to take an antibiotic tablet and stay under observation for 2 hours. This confirmed my suspicion that I’m not allergic to penicillin but just to be sure I have to continue to take a challenge dose of penicillin for 5 more days making a total of 22 tablets across 6 different drug types each day!

We enjoyed a visit from Richard and Alice Tallis on Saturday.  I met Richard at uni many years ago when studying Agricultural Engineering and he has remained a lifelong friend, we were Best Man at each others weddings.  He and Alice farm at Dookie but also grow grapes and make wine under the Tallis brand.  They also manage to operate a cellar door function centre on their farm – busy people indeed.

For those that read the Weekend Australian magazine you might have noticed the article on young bio-medical engineer Jacqui Savage.  She has recently invented a wearable, non-invasive, wirelsss adhesive patch that measures the core temperature of the body from the surface of the skin and transmits it to a phone.  This was done after watching her best friend die of cancer.

I think Jacqui must have been listening to my request.  Hopefully she can include blood pressure and oxygen saturation in the next model!

Good news – the Beanie Auction has raised more than $1800 – thankyou so much to everyone that made a kind donation towards the Royal Melbourne Hospital Ward 7B Butterfly garden appeal.

The lead consultant I am now dealing with is Dr Amit Khot who specialises in Bone Marrow Transplants (BMT).

On Tuesday Jan and I spent time with Amit to go through the myriad of tests I had performed in the previous two weeks.  Amit was pleased with the results saying all was good especially in relation to the leukemia count and in his words ‘this is perfect’.  I argued this point with Amit saying there is no such thing as perfection.  In my view chasing perfection will take you to an early grave!  He summarised by saying I was in the best possible shape for a transplant………with a few provisos.

The reduced renal function (kidney) is of some concern. It has become clear that the IV Ambisome treatment of my lung infection has negatively impacted on my kidney function resulting in unacceptably high Creatinine levels.  This needs to be addressed before the BMT can go ahead.

He has called for yet more tests – this time a nuclear medicine scan of my kidneys which will take place next week.  This is a much better indicator of kidney function that a simple measure of Creatinine level in the blood apparently.

In the meantime in consultation with the Infectious diseases specialist, Romana, Amit has changed my lung treatment from the IV Amibsome to the oral drug, Voriconizole.  The side effect of this drug should be less on my kidneys.

My heart appears to still be in good order after the ‘gated heart pool test’ and ECG.  My lungs are in good order although the exchange of gases was deemed a little low, indicating that the lung infection has had an impact and will continue to do so for some time.

My dental check up was all OK.

The team have determined that my critical organs will be OK for the transplant December 20.

My chemotheraphy “work up” will start December 11.

Tony’s checkup

As part of the process the doctors needed to check my donor – my brother Tony.

He travelled down from Forbes on Tuesday afternoon ready for a day of testing on Wednesday.

We had some good chats including the big news that as Managing Director of his corporate farming enterprise in NSW he has been very busy taking the company into an IPO (Public float).  This will happen in January.  Look up Duxton Broadacre Farms (DBF) for more information.   I must say I am immensely proud of his achievement (and very grateful that he has taken time out of his busy schedule at harvest for the tests!)

His tests included an ECG, general checkup, chest x-ray, multiple blood tests and a briefing on what to expect.

Tony displays the blood multiple blood samples taken by another friend nurse

Tony goes through the paperwork for the transplant.

Tony will have to self-inject a growth compound called GCSF which stimulates the production of Stem Cells (immature blood cells) by his bone marrow, 4 days prior to the donation.  His Stem Cells will multiply up to 8 times what his body would normally produce and flow out of his bone marrow into his blood stream.

Gone are the days where they scrape the bones and suck marrow out for the transplant (although they can still use this technique if need be).  The process now is simply to harvest his Stem Cells and transfuse them into my blood stream.

They do this by ‘spinning off’ about 300ml of Stem Cells over a 5 hour period.  He is hooked up with a line in each arm so that the rest of his blood cells and plasma are returned to his body.

In all the machine will process about 10L of Tony’s blood to harvest the required 300mls of Stem Cells (not bad given humans only have 6L of blood!)

It is this Stem Cell transfusion that will hopefully save my life.  (Read more in the drop down box on the home page at Haematology 101).

I enjoyed reading “To Pixar and Beyond” by Lawrence Levy – Steve Job’s right hand man in establishing this $7b business over 10 years.

He left to set up the Juniper Organisation in San Francisco to enlighten people on a modern tilt at Eastern Meditation and practices, taking on a 100 year business plan!

The Middle Way is a theory that describes the two people inside us fighting each other over diametrically opposed philosophies.  The first is the bureaucrat and the second the artist of free spirit.  The bureaucrat is there to get things done – you know:- lists, order, stability, rules, efficiency and performance (certainly something I can relate to) and the artist cares about joy, love, adventure and spontaneity, creativity and feeling connected and alive.

Levy says that the insight of the Middle Way is that becoming stuck in either one of these states or philosophies leads to frustration. Being focused on function, accumulation and performance makes us wonder if we have truly lived.

On the other hand if we are living freely and are always engaging our passions we may not feel well-grounded and be frustrated at the lack of achievement.

The Middle Way suggests the best outcome arises from a blend of these two sides.  This requires us to look beyond our current conventions and move outside our comfort zone.

For me this describes a big part of my life to date.   In my career so far I have been very focused on achievement and the bureaucrat has dictated many of my actions.  Building businesses and accumulating things has been a big part of my life.

But of course no one on their death bed (hopefully not me yet!!) would say they wanted more time at the office. People and relationships always seem to be the more important thing.

“Life balance” is probably another way of describing the Middle Way.  Have I spent enough time with my family over the years?  Was I there when needed?  Have I kept in touch with my friends and family to maintain meaningful relationships?

What I have noticed since the diagnosis of my illness is that family and friends have leapt to the forefront and business has certainly taken a back stage. (I am fortunate in that I have business partners who are able to keep things going without my day to day involvement).

However the really important things seem to be the people around me.  It has been fabulous to have so many people make contact with me – through my blog or directly.  And our weekends are a constant source of enjoyment with visitors from all parts of Australia who ‘just happen to be in Melbourne”

A huge positive from my illness has been the re-connection with so many friends and the close support from my extended family.

Sian and Nick Leywood from Wagga dropped in for lunch on Monday

Jan’s parents Allen and Helen Sheridan dropped in to check up on me!

From a medical point of view most things are going well with one exception – my kidney function.

Over the last week or so my kidney function has deteriorated somewhat.  The doctors have put this down to a side effect of the Ambisome (IV drug used to treat my lung infection – Aspergillus).  I will probably be on this drug for another few months.

Kidneys are your primary cleaning machine for your blood stream and at the moment mine are not doing their job. I have a very high Creatinine reading of 200 umo/L – almost twice the normal count.  In addition my urea levels are much higher than normal at 15.2 mml/L.

Creatinine is a component of the breakdown of protein.  If I was a body builder or had changed my diet to be protein only then I’d expect a high Creatinine level in my blood.  But without these the doctors can only put this down to a side effect of the drugs I am taking.

To overcome this I need to consume large amounts of fluid in an attempt to flush the system.  It is not unusual for me to drink 2-3 litres of fluid a day, plus the HITH team are adding a litre of IV fluid on top of this.  My body is passing this through (meaning going to the toilet all the time!) but the Creatinine levels area stubbornly staying high.

I have a consult with the lead BMT consultant, Amit Khot this week so hopefully the treatment to this will be discussed.

Visitors

On of the great things about this illness (is this really possible) is that I have managed to catch up with many friends for meaningful conversations.

Friday morning started with a visit by Rob Neal, from Condobolin.  Rob was down to row in a masters crew in the Head of the Yarra.  Not bad for a country boy!

For Friday lunch we caught up with Kate Sutherland and business partner John Regan to discuss family, berries and life in general.  Kate’s twin daughters are great friends with Claire and in fact Kate is often referred to as Claire’s surrogate mother and Claire as the third of the Sutherland twins!!  Kate,  John and his wife Marion run a huge berry business in Tasmania, Burlington Berries, and husband Stewart runs Upper Murray Seeds.  They are a busy couple.

Rob Neal from Condobolin

Kate Sutherland and John Regan

And on Friday evening we enjoyed dinner with Michelle Loane and Alison Napier – farmers from the Fingal Valley where we live in Tassie – who were over to watch their kids row in the Yarra regatta.

Friends making a visit over the weekend included the Gilfedder family – Mike, Nicole, Jack (and girlfriend Bec) and Sam minus their daughter Lucy.  It was great to catch up with these guys after 12 months or so.

Michelle Loane and Alison Napier dropped in for dinner on Friday.

The Gilfedder family from Sydney

On Saturday night we caught a movie, at the Kino – The Teacher after eating out at a trendy little restaurant, Tonka.

Harry Youngman visited for lunch Sunday were we got to talk family and of course business.  I love my catch ups with Harry as he is a great entrepreneur with lots of activity in the Ag space.

And Sunday afternoon we rode out bikes over to Yarraville to the Sun Theatre to see the Voyage of the Southern Sun – a documentary about Mike Smith’s flight around the world in a small 2 seat home built sea plane.  This is a great doco and worth catching if you can.

The Beanie Auction

The beanie auction has now closed and the winning bidder is Michael McConachy of Helispirit in Kununurra, WA.  Michael is my business partner but I can assure everyone that he did not have any inside information!  Congratulations Michael!!

Michael paid $750 for the beanie (I’m not sure how much use it will get in the Kimberley) but was closely followed by Liz Dowling on $700 and Roger Wakefield also on $700.  My sister Fiona and husband Michael bid $550 early on and we had plenty of bids in the $200 and $300s.

Payment Details:

If you pre-registered please pay your $10 (or $15 if you were a late starter) this week and thanks to those losing bidders who have pledged to make a contribution equal to their bid (not mandatory but very generous) to the hospital fund (for the butterfly enclosure next to room 5!)

Donation details are on this link – :

https://www.thermh.org.au/support-us/general-donations?utm_source=header_button

Choose Cancer Services as the Gift Preference .

Then email your name, address, donation amount and a note that your contribution is for Ward 7B to Sandie Baskin – the lady in the red jacket with the gold jewellery, RMH fundraising and bequest coordinator!! (sandie.baskin@mh.org.au ).

Sandie will track the contributions ensuring they go to Ward 7B  and send you receipt  for tax purposes.

On Wednesday I had a major appointment with John Seymour to review my latest Bone Marrow Biopsy and discuss progress so far.

John indicated the Biopsy was clear of leukemic cells – showing I am still in remission – which is great news.

The discussion moved onto the bone marrow transplant and the post transplant treatment.  This will be handled by another consultant Amit Kot, but John was happy to shed some light on issues and timeframes.

The preparation (read chemo) starts December 11^th and the Transplant will go ahead December 20^th.  Tony, my brother has to be in Melbourne on 29^th of this month for more tests to ensure everything is OK for the transplant.

John told me that without the transplant there is a 90% chance the leukemia will return within 12 months.  Less than 5% of patients with my disease (AML with 3 mutations) will survive greater than 2 years without the transplant – really I have no option!

He also said the occurrence of AML is around 2 per 100,000 or around 100 cases in Victoria per year.  I asked him how much it cost to treat someone like me – “$1.5m as a rough estimate”.  Luckily we are still in private health insurance, although it would be covered in the public system otherwise.

My post transplant treatment will be critical for a 6 month period and important for up to 2 years.

Disappointingly I will not be able to fly (as pilot) for at least 12 months.  CASA don’t like to have potentially sick people in the air for some strange reason!

I also had a dental checkup in preparation for the transplant, including x rays.  This was to ensure I am no carrying infections into the transplant which could be serious.

On Thursday I attended the Austin Hospital for an allergy test.  This involved lots of needles on a grid on my arm to test which antibiotic I am possibly allergic to.  This is because in the early days of my treatment I developed a significant rash on my upper torso – but the doctors could not determine what it was at the time.

Lachy joined us for dinner to celebrate the christening of our new BBQ.

Beanie Auction

Most bids are now in the $300+ range but there are still a few higher than that!  You have until Sunday night to snap up this masterpiece so bid up!

All proceeds go to the Ward 7B at RMH.

Please remember if you registered to enter the auction last week you are committed to donating your $10 to RMH, even if you don’t bid.  If you want to join the bidding this week you are up for $15 registration.  Only the winning bidder pays the full amount. Every donation counts!

Donation details are on this link – :

https://www.thermh.org.au/support-us/general-donations?utm_source=header_button

Choose Cancer Services as the Gift Preference .

Then email your name, address, donation amount and a note that your contribution is for Ward 7B to Sandie Baskin- the lady in the red jacket with the gold jewellery, RMH fundraising and bequest coordinator!! (sandie.baskin@mh.org.au ).

Sandie will track the contributions ensuring they go to Ward 7B  and send out a receipt  for tax purposes.

Monday involved a quiet day at home as Jan was still away for her GGS business and my parents had headed back to Cootamundra on the XPT train.  However I had the morning on the phone with a Proway board meeting – luckily things are going well with that company.  The buoyancy of agriculture at the moment has translated into a very busy time for Proway.

On Monday evening we headed off to the ABC studios in Southbank to attend Q & A in the audience.  We have always wanted to attend a live audience and Jan’s uncle, David, had said he was going so we got online and booked a place.  The whole evening was very interesting – not to mention the 7 TV cameras and multiple crew keeping the program running smoothly.  Tony Jones had his work cut out keeping Jacqui Lambie on track for the evening!  Jan was shortlisted by the producers to ask a question but unfortunately they ran out of time  before she had her chance to shine on TV!

Tuesday was pretty much a full day at Peter Mac and RMH, starting with a blood transfusion (over 3 hours) as my red blood cells had dropped below the critical 80 mark.  Matt and Robyn Kibble also dropped in for a quick lunch at Peter Mac. The central atrium of the Peter Mac building was filled with the beautiful music of a string trio over lunch. After lunch it was over to RMH to get a top up of Ambisome.

At the end of the day we got a lovely surprise visit from Edwina Colvin from Tassie.  Edwina was in Melbourne to catch up with friends and managed to pass on a few stories of Tassie, including her time spent walking our lovely little corgi – Sparky.  Sparky has been staying with Knox and Cate Heggaton in Perth (near Launceston) but when they have been away Edwina has been dropping in to take her for a walk – certainly way beyond the call of duty for any friend.

Beanie Auction

I have already received a number of excellent bids for the beanie in the range of $100-$200.  What I can say is the leading bidder is somewhat higher than that so please dig deep and place a bid!  You have until Sunday night to snap up this masterpiece.

All proceeds go to the Ward 7B at RMH.

Please remember if you registered to enter the auction last week you are committed to donating your $10 to RMH, even if you don’t win the auction.  If you want to join the bidding this week you are up for $15 registration.  Every donation counts!

Donation details are on this link – :

https://www.thermh.org.au/support-us/general-donations?utm_source=header_button

Choose Cancer Services as the Gift Preference .

Then email your name, address, donation amount and a note that your contribution is for Ward 7B to Sandie Baskin- the lady in the red jacket with the gold jewellery, RMH fundraising and bequest coordinator!! (sandie.baskin@mh.org.au ).

Sandie will track the contributions ensuring they go to Ward 7B  and send out a receipt  for tax purposes.

On the medical front Friday was low key.  I met up with another infectious diseases doctor to try and determine if I am actually allergic to any of the myriad of drugs I have been taking.  This is because in the early stages of my treatment I got a severe rash on my back and then complete upper torso.  The doctors thought it might have related to the dose of allepurinol or perhaps the antibiotic Tazacin.

It is important that we try to determine which drug I reacted to as this could have an impact on my next round of chemotheraphy.  I will have more tests for this on Thursday.

I also had an unscheduled ultrasound of my kidneys on Friday as the doctors had been concerned about a recent drop in my kidney function.  They think the Ambisome might be having an impact here.  The tests appeared to be OK according to the technician but of course I have to wait for the doctor’s report for the final word!

My parents made the trip down to Melbourne from Cootamundra again this weekend and we shared a lovely home cooked meal on Friday with them, Lachy and his girlfriend Hanna and Ruth and David Thomson who had driven down from Wagga for the weekend.

Saturday morning saw a visit from Lisa McSweeny (a good friend from Sydney – in fact one of Jan’s bridesmaids at our wedding).  Lisa kindly gave me a ‘learn to draw’ book to help pass the time.  It was great to see her again looking so well after her own brush with cancer just a few years ago!

Jan headed off for a GGS ‘retreat’ at Mansfield – I think it was of a strategic planning type rather than the pamper weekend!

Sunday was a busy day with a boat trip around the docks and the Yarra river with my parents, the Thomsons and Rouches.  It was a beautiful day in Melbourne for this outing and thoroughly enjoyable.

We enjoyed a great fish and chip lunch dockside before I caught up with “Dreamy” – Andrew Sheridan, Jan’s brother and his partner Heather and three children Ned, Maggie and Jack.  They were en route back to Bairnsdale from a camping weekend in the Grampians.  This catch up was very brief as I had to head back to the apartment for my regular HITH visit – this time for bloods tests and IV hydration with Saline.  The Ambisome has been cut back to three times a week now.

After that we had a surprise visit from Graham and Josie Lean and their daughter Sophie.  I’ve seen Graham a bit in the last few months but haven’t caught up with Josie for many years so it was good to see them again.

Following that there were a few phone calls to family members and other friends to let everyone know I was alive and well and things were progressing as they should be.

Beanie Auction starts this week!

If you have registered an interest in the Beanie Auction (and more than 20 people did) now is the time to start bidding.  (If you didn’t you can also bid but it will cost you $15 regardless if you are the successful bidder – late expression of interest!). Bank Details will be published later in the week.

This is how you bid:-

Send me an email, text or respond to any post on the blog and tell me your bid for the blue beanie.

I will update people on the range of bids so you know where you stand.

The Auction will run for a week, finishing on Sunday week 12.

Now that I am in the process of being handed over to the Bone Marrow Transplant Team  (BMT) –  the main goal is getting a myriad of tests done.

The results of these tests will dictate the type of pre-transplant chemotherapy I receive.

Rather than take you through each one I will provide the list below and comment on a few:

The Bone Marrow Biopsy is the third one I have had to check that the Leukaemia is in remission (results still to come).

The consult with Ramona who is the Infectious Disease Specialist was to review the lung infection.  Ramona was pleased with progress but found a conflict with the Ambisome and my kidney function which had started to suffer.  She has reduced the Ambisome dose to just 3 times a week – probably a great thing for my health care fund as we found out each bag of lovely yellow liquid costs more than a $1000!

My lung function tests involved blowing into a pipe under instruction – not so different to the bagpipes so I was reasonably comfortable with this one!

The bone density test involves another scanning machine.

The Gated Heart Pool scan involves adding a radioactive isotope (Technetium 99M) to my blood and under an  ECG taking scans of the capacity of the heart to pump blood.  The half life of the radioactive material is 6 hours.

We ended the day by heading off to a talk at the “School of Life” by Lawrence Levy – the guy that took Steve Job’s PIXAR company and turned it from a $50m a loss into a $6B company and then left to set up a modern day Buddhist school.  His talk was engaging and I am looking forward to reading his book.

The Beanie Auction will start soon – please register your interest ASAP so you don’t miss out.

Thanks to Darren Wallace for moving from blood donations to fortnightly plasma donations – you are keeping people like me alive!

Monday and Tuesday have also been fairly easy going with the usual HITH visits for blood tests and observations.  The HITH team generally come in the middle of the day but I have been checking early each day to give me some time for activities.

I have received lots of interest in the auction for the Beanie which will start next week.  Keep in mind all proceeds go to Ward 7B at RMH.  Please let me know if you intend to bid for the beanie – auction starts next week!

On Tuesday morning we met Ian Herbert (a friend from Tassie) who had flown in for the morning to check out the possibility of buying a second hand plot harvester from the Pickles auction.  I helped Ian assess the unit before he decided that it was too badly damaged to be useful for his trial work in Tassie.

Ian Herbert arrives in Melbourne to check out some machinery

Ian and I measure up the plot harvester

Tuesday was a hot day in Melbourne and we hired another small boat for a trip up the Yarra with Lachy and his friends.  This was a great evening and I even managed enjoy one light beer!

Lachy’s friends enjoyed a trip down the Yarra

Wednesday was a big day as we spent all day (9.30am- 6.30 pm!!)at the hospital with tests and meetings with consultants and co-ordinators.  This day was focusing on preparation for the bone marrow transplant (BTM).

I now have a lot of information about the BTM but as a summary:

The transplant from my brother Tony is set for December 20^th

I will spend the week prior in hospital undergoing an aggressive chemotherapy program aimed a killing off all blood cells and bone marrow

I will spend the next 3 weeks in hospital recovering with week 2 being very tough – with symptoms similar to my original round of Chemo – sore mouth, diarrhoea etc.

I will be on another cocktail of drugs including the USA drug Midostaurin (again).

The following two months after being discharged from hospital will be critical from an immune perspective as my immune system will still be rebuilding.  I will have tests three times each week.

In summary the BTM is not an easy operation and it carries significant risks but it is advised for the type of Leukaemia that I have (AMML with FLT-3 and 2 other mutations) otherwise the chance of recurrence without the transplant would be quite high.

I have another two days of tests and consults so will report back with more information when I can.