Month: December 2017

Wednesday was a pretty quiet day but I managed to spend half a day at the hospital on Thursday.

I had an early appointment with the infectious diseases doctor at RMH to check in on my lung condition but when I arrived I was told that she was sick herself that day.  However they were keen for me to see someone so I was bumped down the line to see a Registrar, Melissa Lee.  This change only incurred an hour’s extra wait so the paper got read from front to back.

Melissa was concerned about the Voriconazole Level (the drug that’s replacing Ambisome for treating my lung infection) but as my blood results for this drug had not been returned yet there was little she could say other than “we will keep an eye on it” and contact you to follow up.

After that appointment I moved over to Peter Mac to have my Hickman line dressing changed.  This process usually takes about 15 minutes but I had a very chatty nurse who wanted to know all about me and my businesses – extending the process to around 30 minutes!

Melissa was as good as her word and phoned on Friday to say she and Ramona (my infectious diseases consultant) were concerned the Voriconazole level was too low and they wanted me to increase my intake by just 50mg per dosage (twice a day).  Once we sorted this out we then had to adjust the dosage times as it is important to measure the drug level in the blood 12 hours after taking the last dosage.

This meant changing the time of taking the drugs from 5.00pm (they need to be taken an hour before or after eating) to 8.00pm on Friday, then 9.00pm Sat, then 10.00pm Sunday which will place me 12 hours prior to the blood sampling which is usually 10.00am at the hospital.  This now means I will be taking drugs at 5 different time each day!

It simply reinforced to me how precise this side of the medicine is.  When you are undergoing cancer treatment the doctors like to measure everything they can and adjust things accordingly.

Over the last few days Jan and I have continued our exploration of Melbourne with a few good walks and bike rides around the city.  We met up with Jan’s uncle, David Sheridan, who had been tasked with selling our old Prado from Tassie.  This took David a few weeks but he managed to end up with a big bag of cash that he passed over to us.  David is a car enthusiast and has a warehouse full of old cars he is working on.

He also raced Datsuns in the Round Australia Trials in the 1970s.

We have a few visitors lined up for the weekend so I will happily report on that next week.

For now I feel well and things are going well.

I received confirmation from my Transplant Co- Ordinator, Siobhan Mineely, that the Transplant will be delayed by 2 weeks. Chemo starts on Boxing day and the Transplant itself will take place early January.

STOP PRESS!! News just in from Sandy, of red jacket and gold jewellery fame, total money raised from the beanie auction is sitting at $3 300, Many thanks to all who contributed.

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.