Month: November 2018

This week I have reached another milestone – a set of blood test results that should allow me to re-apply for my medical certificate to allow me to fly again.

CASA (The Civil Aviation Authority) have very strict guidelines for anyone who has been diagnosed with any sort of cancer.  They basically assume you will drop dead in the sky no matter how well you have recovered.

In my case with AML, CASA require a detailed letter from my Haematologist, Amit Khot, describing my condition, my treatment and current situation.  One of the key things they stipulate is a minimum haemoglobin level of 120.

And for the first time since my Stem Cell Transplant in January my haemoglobin has reached 120!  This was my trigger to start my application process with CASA to regain my medical licence.

To that end today I had a visit with my DAME (Designated Aviation Medical Examiner) – who practices in Launceston (and also happens to be a pilot himself – specialising in aerobatics).  The meeting was encouraging but at this stage it looks like the application will be made in February after my next bone marrow biopsy in January.

He has also suggested that the easiest way to regain my medical licence will be to inform CASA that I would be happy to initially fly with a ‘safety pilot’ – basically a co-pilot.  In the DAME’s experience pilots returning to flying after a malignancy will find CASA look favourably on this method of regaining their licence.  Whilst not ideal I am sure I can make this work.

The rest of my results were encouraging – WBC – 7.6, Platelets – 97, Neutrophils 5.4 and Creatinine 106.   Hopefully these results have now stabilised but only time will tell.

In the meantime I have slowly been weaning off the steroids and this week have reduced the Prednisolone down to just 5mg/day.  It will take another few weeks to come off this drug altogether and with it a myriad of other drugs.

Other happenings

We travelled back to Melbourne on Sunday afternoon to attend a memorial service in Benalla for Dick Tallis’s dad, Peter.  He was a fantastic man and his service included some lovely eulogies from his family and friends.

 

We returned to Tassie on Wednesday having attended a function for Jan’s Aunts and Uncles and their friends on Tuesday night.

 

We have returned to Melbourne for a few days and I won’t be having blood tests until later in the week which I will report on next week.

I have been feeling really well over the last couple of weeks and gaining strength every day.  At long last it looks like there is light at the end of the tunnel!

Last week we saw the Sound of Music performance in Launceston.  It was an awesome show performed by locals, including Bronte Kendell, daughter of Miles who is a new friend in Launie.  (Miles owns the Super Cub that I went flying in a few months ago and happens to be the son of the late Don Kendell, from Wagga).

I enjoyed another bike ride with Ross Williams last Thursday heading off around the base of Ben Lomond and then making the trip up Jacobs Ladder to the ski resort.  It was a beautiful day for a ride which we both thoroughly enjoyed (despite Rossco taking me off road into some logging country!)

We flew over to Melbourne to join a group of our Wagga friends at Daylesford for the weekend.  We enjoyed some great company and lovely food and wine.  We also visited Paul Bangay’s Stonefields garden at Daylesford on the  Sunday.  It certainly was impressive if not a little over crowded with on-lookers.

The sites/sights of Melbourne

I have been asked by a few people to list some of the ‘out of the way’ places we have visited over the past 14 months during my extended stay in Melbourne (mostly Alice Tallis).

For those of you who don’t know Melbourne so well you might find the odd cafe/restaurant or gallery worth checking out from my pick list below.

Lindsay Fox Car Museum – Docklands.  A collection of 60 or more cars that Lindsay Fox has collected over the years housed in an historic warehouse in Docklands.  Good for an hour or so.

Mission to Seafarers – a heritage listed building in Docklands that still serves as a meeting point for seamen today.  Loaded with historical information.

Gallery DAX at Melbourne University (just off Royal Parade).  This collection of art has been presented by mentally disabled artists – it looked like a normal modern art collection to me!

Graffiti lane – just off Flinders street opposite Federation Square.  Very popular with the tourists these days and always changing as each new artist leaves their mark.

Buxton Gallery of contemporary art – Just off St Kilda Road on Southbank, behind the NGV.  This is a private collection of art and sculpture.

The Immigration Museum – Flinders Street.  Certainly worth a visit.

Flinders Lane Gallery – a lovely (very much out of the way) boutique jewellery shop where artists sell their wares on commission.  A must for the boys if they’d like to impress!

Port Phillip Ferries – leaves from  Docklands and heads over to the Bellarine Peninsula – worth a day trip to check out Port Arlington and the surrounding area – take a bike.

Melbourne Boat hire – one of our favourites.  These little boats are electric powered (by golf buggy running gear) and make for a great afternoon out putting up the Yarra with a few friends.  North Quay in Docklands.

Cafes and Restaurants

Sosta in North Melbourne – a lovely spot with fabulous modern Italian cuisine.

Sargon in Gratton Street at the base of Peter Mac – best coffee in the building!  And I’ve spent some time there over the months comparing.

Masani in Drummond Street just behind Woolies at Carlton.  Great old fashioned service and Italian food.

Longrain in Little Bourke Street (China Town) a perennial favourite for Asian Fusion although I must admit far too spicy for me on our  last visit.

Shark Fin Inn Restaurant – great for authentic Yum Cha.

Chin Chin (Coda and Tonka) all tucked away off Collins or Flinders Lane on the east end.  Very popular (and mostly pretty noisy) but trendy food and worth going if you can  get a seat.

It Solito Posto – a famous Italian restaurant just off Collins Street in George Parade.

Sake – Japanese restaurant just below the arts centre, Southbank.  Great food and ideal if you are seeing a show nearby.

Pure South Dining – Southbank.  One of our favourites as they specialise in serving wine and food from Tasmania!  Lovely views over the Yarra if you get a window seat upstairs.

Saluministi in Docklands.  Great coffee and pork panini for lunch.  End of the tram line down Collins Street and certainly worth a visit if you haven’t been into Docklands.

And lastly the Squires Loft – a meat lovers haven, in Docklands on Victoria Harbour Promenade.  A favourite with Jan’s parents, Helen and Allen,  (mostly because it is just two minutes walk from our apartment).  The steak and lamb chops are certainly something to look out for!

 

 

 

This week was my first attempt at having blood samples in Tassie – and there were a few complications!  The local GP, Michael Lees took a sample on Monday but by Tuesday had rung to say the pathology lab needed more samples.  Another trip to Campbell Town (luckily only 15 mins away) and two more samples later the job was complete.

And the good news is all blood results were close to the normal range, including 3 of the 4 liver enzymes.  But the  most exciting result was the Haemoglobin or red blood cells (Hbs) which appear to be holding up well at 118 (the normal range starts at 130).

Results were as follows:

Hbs – 118, WCCs – 6.8, Platelets 105 (slowly sinking due to the Steroids), Neutrophils – 5.1 and Creatinine 101.  Magnesium and Potassium are now in the normal range (Largely due to the daily intake of tablets!) and the Bilirubin – 7 (4-20 is the key indicator of liver health).

I was very happy with these results – the clean Tassie air is obviously doing me well!

Another most interesting thing to come out of the blood tests this week was the comparison of the blood results from my first test in August of 2017 upon diagnosis.  The local Pathology lab only had these and this week’s results for comparison (Unlike the 100s that appear on the RMH summary sheet) and they made for interesting reading.

Have a look at the WCCs – totally out of control!  In fact when you look down the list most counts back on 29/8/2017 are out of wack being either higher or lower than the normal range.  Leukaemia is easily diagnosed with the haematology knowledge that I now have!

What a difference a few rounds of chemo and a stem cell transplant can make!

Exciting things

It has been fantastic returning home and being able to potter around the garden and sheds and farm.

First cab off the rank was a long bike ride with good friend Ross Williams.  Ross and wife Jo moved down from Wagga just before our arrival in Dec 2016. They have a beautiful farm on the edge of St Helens where Ross ‘backgrounds’ cattle for Greenhams.  Ross rides a BMW 1200 and took me touring down some of Tassie’s great roads to the coast – nice and twisty with lots of challenges.  I have pinned him down for a weekly ride!

On Sunday I popped over to see Ian Herbert and Catriona Nichols.  Ian is responsible for me purchasing my motor bike as it was at his suggestion.  He is still contemplating what bike he is going to purchase.  Cat and Ian have just taken on two beautiful Smithfield puppies which are  very cute.

 

We enjoyed a great lunch on Sunday at Milford with Tim and Maryanne Rhodes and Rob and Sally McCreath, followed by a farm tour.  Tim and Maryanne moved down to Tassie from Walcha 20 years ago and haven’t looked back.  They have spent the best part of that time farming cattle and doing up the historic Killymoon buildings.

Rob and Sally (who happen to be Lachy’s girlfriend, Hanna’s, parents) have recently moved to Tassie to farm beef near Deloraine, having farmed in southern QLD for many years.  Like us I think the climate was getting too hot for them up north.

Claire has  been with us for almost two weeks now and has been very unwell with glandular fever (EBV).  This has certainly knocked her around but she appears to be on the road to recovery now.  It has been difficult to convince her to take time off work being the diligent person that she is!

There is nothing like a good BBQ in the back paddock.

Even Sparky is enjoying being back in Tassie, although in this photo it looks like she is wistfully remembering her life in the city with Lachy, Milly and Fi- our thanks again to everyone who took care of her while we were away from Milford.

I managed another ride on Monday to catch up with Stewart Sutherland and two of his gorgeous daughters, Emma and Libby at their (somewhat huge) berry farm near Cressy.  Stewart is also in the market for a bike to join the gang.

On Saturday we re-located to Tassie after 14 months of living in Melbourne.  This was a big milestone and one I’d been looking forward to for a long time.  We certainly had lots of bags (and Sparky) to get back home after so long away.

We met up with our BMT consultant, Amit Khot last Friday to discuss the move which he was happy with.  The last set of blood results were once again very stable and the exciting news is that my Haemoglobin level seems to be holding up at over 100.  The normal range is above 120 so I appear to be close.

However the medical team (both Amit and my Clinical Nurse, Ming Xie) would not be drawn on the idea that my bone marrow might be now functioning to full capacity. It is possible but the high level may well be the normal ups and downs that you can experience post bone marrow transplant.  We will have to wait and see.

The platelets, white blood cells and neutrophils are all holding up well as follows:

Hbs – 112

WBC – 9.7

Neutrophils – 7.4

Platelets – 119 (notice a drop from last week mostly due to the steroids).

My liver enzyme results have improved slightly over the past week as well.

We will still need to see Amit on a monthly basis in Melbourne but he has briefed a haematologist at Launceston General Hospital in case things don’t go to the plan.  He is happy for blood tests every 10 days or so in Tassie, with results being sent through to Peter Mac when they are processed.  The CMV checks still need to be performed by pathology in Melbourne as the Tassie pathology services don’t have the ability to process this one apparently.

I am still on a huge cocktail of drugs, almost 30 tablets a day, but the doctors are slowly weaning me off the steroids.  This will take another month when hopefully I’ll be back to just 5 or six tablets a day.

The longer term prognosis for the GVHD is that it may well take many months to pass, with periods of re-recurrence from time to time.  My condition is now considered to be in the ‘chronic’ stage.  It will be something that is treated with steroids (and the other drugs to combat the side-effects), but generally not considered life threatening.

Today I checked in with my local GP, Myrle Gray who originally diagnosed my condition back in August 2017.  Myrle was certainly pleased to see me in good health.

To my surprise she indicated they can provide a full blood service at the tiny surgery/hospital in Campbell Town (our local village about 15 minutes from our farm).  They can take blood samples in the morning and have results that afternoon as a pathology car drives between Launceston and Hobart daily ferrying blood samples between pathology laboratories.

And if I need a blood transfusion (which is highly likely) this can also be performed at the Campbell Town hospital – saving me a much longer trip into Launceston.

We have certainly enjoyed returning to our new farm and home in Tassie and have attempted to pick up where we suddenly left off over 14 months ago.

We enjoyed a great catch up with Will and Louise Baylis before we left Melbourne.  Will is a high powered funds manager in Melbourne while Lou runs their farm west of Geelong.

 

 

Claire arrived in Tassie on Sunday afternoon for a few days R & R  test!

And Dougall jumped on my new motorbike in Melbourne on Sunday and came across on the Spirit of Tasmania that night.  He arrived soaking wet on Monday morning – nice to see the rain!

Knox and Cate Heggaton (Knox leases our farm) joined us for lunch on Monday – (which was a public holiday in northern Tassie only!) and provided us with a great farm tour that afternoon.  The place is nice and green and looks a picture with lots of lovely chubby lambs in most paddocks.  So far the terrible mainland drought has stayed away from Tassie.

I will keep you up to date as news changes or new blood tests come in probably only  every 10-14 days from now on – a very exciting prospect!