Back on Steroids

It has been about a month since my last blog and there have been a few developments so I thought I would update everyone.
On the great game of Leukaemia Snakes and Ladders I have recently landed on a Snake and have slithered back a few rows. Luckily this is not a big one, but nevertheless  a setback that is not welcome.
I am currently having blood tests every two weeks, and towards the end of January my consultant detected a strange increase in the Eosinophil level – which is one indicator that GVHD has returned.

The Eosinophil is a white blood cell that is primarily used to fight diseases or infections (in a similar way to neutrophils) and an increase beyond 0.5 is considered to be outside the normal range.  In my blood test at the end of January this was sitting at 2.3 and rose to 2.9 early Feb – ringing alarm bells for Amit Khot (my consultant haematologist).

Amit was quick to put me back on steroids and could not accurately pinpoint where the GVHD was attacking – other than it had obviously flared up.

So after just 3 weeks off a very low dose of Prednisolone I am now back to 20mg a day and the weaning process will take another couple of months.

After just four or five days the Eosinophil level dropped back into the normal range indicating that the steroids had started to work.

Of course the usual side effects from the steroids come into play.  I have to increase the anti-viral drug Valaciclovir from one tablet a day to 12 taking me back up to around 24 tablets each day.

The other unusual issue at present is a continual ache of my muscles and bones.  I am currently managed this with panadol two or three times a day and although it can be quite severe I can generally manage most normal things during the day.  The pain usually subsides by about lunchtime.  As one of my mates commented recently “don’t worry I feel pretty sore and slow until about lunchtime on most days so you’re not on your own!”

Apart from these issues most other things are going well.  On a day to day basis I can get out and about and do most things on the farm that need doing.

I must say I am enjoying being in the fresh air and having the ability to get out and about.  Every day is a bonus!

On my last blood tests the results were:

Red Blood Cells – 125, White Blood Cells 11.3, Platelets 204 (yippee!), Neutrophils 8.1 and Creatinine 96.  These are all now in the normal range (or even at the high end).

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These counts are up a little from the previous tests – a normal response to being on steroids.

My last consult with Amit was done via ‘Telehealth’ – basically a Skype session.  This was a great way to exchange information and of course saved us travelling to Melbourne for a 30 minute consult.

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Other happenings

Jan and I recently did a great day’s touring of the North East of Tasmania.  We took a few back roads (that I had previously explored on my bike) and ended up at Branxholm for a coffee (and dropped in to a local Flower Show), then Gladstone for a pub lunch before heading up to view the 56 Wind Turbines at Cape Portland.  We headed home by the coastal road dropping in to see the famous “Bay of Fires” north of St Helens.

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And I have been out and about on my bike this time with Jamie Loane, a neighbour, who knows the back roads around Eastern Tasmania.

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The chook shed is almost finished.  Next the vegie garden!

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The Johnny Farnham Blog

Given my ‘last ever Blog’ was just prior to Christmas I thought I’d call this one the Johnny Farnham blog!

We recently travelled to Melbourne for a two-day series of tests and appointments to mark One Year post Stem Cell Transplant.  It is usual for Leukaemia patients to undergo a series of tests at the one and two year mark.

These tests involved an extended range of blood tests, a dental check up, a Bone Marrow Biopsy, a Bone Density test, a lung function test and a Gated Blood Pool scan (to test heart function).  The doctors are keen to keep a close eye on vital organs as these are most likely to suffer with the drug regime that follows a stem cell transplant.

I am pleased to report that all tests were positive with encouraging results.  The big one of course is the bone marrow biopsy where the team look for any signs of Leukaemia.  Once again results show I am in remission (no leukaemia).

The other tests make a comparison with previous results (at the 100 day mark) and against a ‘normal’ person of your age, weight and gender.  All my tests show no regression since the 100 day tests and in most cases as good or in part slightly above the ‘average’ person.

This is very reassuring for the path forward.

The blood counts were stable again (having been so for a few months now) with Red Blood Cells at 115, White Blood Cells 7.9, Platelets 139 and Neutrophils 3.3.

The liver enzymes have improved somewhat and are almost in the normal range.

The Chimerism test once again showed 100% for both positive and negative.  I understood chimerism to be an indication of how well the transplant has ‘taken’  but asked Ming, my clinical nurse, to explain the detail of positive and negative.  This is what he had to say!

“Ummm, the easiest way to understand this is when I write 100+/100-, we measure the genetics of the donor and recipient.  In the post transplant setting, we look for a marker called CD3, positive on the T-cell, and negative on the non T-cell. The CD3+ (T-cell) reflects the immune system – lymphocytes, i.e. B cells which produce anti-bodies against antigens or foreign particles; and T cells – being the fighter against infections and responsible for Graft versus leukaemia effect (as well as responsible for graft versus host disease). And the CD3- (non T-cell) reflects the bloods system – erythrocytes (red cells), megakaryocytes (mother of platelets) and granulocytes (most abundant white blood cells including neutrophils). Being 100% on both sides (+ and -) means Tony’s stem cells have fully taken over both systems, and that your blood and immune systems are constituted by his stem cells, and hopefully sustained for the rest of your life.”

It is nice to know that the transplant has worked well! Thanks again to my brother Tony – he saved my life and I am VERY grateful!!

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This Graph shows my platelets level since transplant a year ago.  The platelets provide a blood clotting agent and are one of the best indicators that the transplant has worked.  When they drop below 20 you generally get a platelet transfusion to boost the level, 150 is considered to be the base level for a normal person. I had 3 platelet transfusions in 2018

Following a meeting with our consultant Amit Khot I was able to drop the steroids and Somac  and reduce the Valaciclovir (anti-viral) down to just one tablet a day (down from 12). This reduces the total number of tablets from around 24 to just 10 a day at present.

I will stay on fortnightly blood tests and monthly consults with Amit – although my next one will be via TeleHealth – basically video conference.  Saves a trip to Melbourne.

The only ‘gripe’ I have at present is that my muscles and large bones seem to ache a lot.  This is usually worse in the mornings and makes movement quite painful. However by lunch time I usually feel much better and am able to get around a do a few jobs.  I now know what it must be like to be in your 80s!

In January we travelled up to Brisbane courtesy of Novatis.  I was asked to speak at their staff conference to provide the patient experience in relation to Midostaurin (the big, smelly pill supplied in the early days of chemotheraphy).  It targets the FLT3 mutation of my Leukaemia.  This drug was new to Australia and not yet on the PBS.  Novatis kindly offered it to me Free of Charge, probably saving us around $100,000.  I thought taking a few days out (of my not so busy schedule) to talk at the conference was the least I could do!

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At the Novatis conference.  I am trying my best “Kochie” impersonation!

Family and friends

We enjoyed a fantastic Christmas with family including my parents and Jan’s parents.

And following that a few days with friends from Forbes – Bob and Danielle Scott.  We met up at Bruny Island, south of Hobart and took a fantastic boat trip with Pennicott Tours.

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img_3993.jpgJohn and Sandy Hawkins (our neighbours at Wagga) made a visit for a few days also – escaping the extreme heat in NSW.  We now know why we moved to Tassie when we see 40 plus at Wagga and 26 in Tassie

Meanwhile back to work on the farm!

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Week 67 – The last blog

This will be my last blog (well at least for quite some time) as things are moving along well and I don’t have much to report on a weekly or even monthly basis.

I would like to thank everyone for their wonderful support and well wishes to both Jan  and I during the year.  It has been very encouraging and certainly a big help with my recovery.

We would like to wish everyone a wonderful Christmas and festive season and a great New Year.  Hopefully mine will continue to see improvement and by this time next year things will be even better still.

My last tests were very encouraging as all blood counts have bounced back up again.

Red Blood Cells (Hb) –  121, White Blood Cells (Wcc) – 6.9, Platelets – 96, Neutrophils – 3.7, Potassium – 4.6, Magnesium – 0.71 and Creatinine 96.

After the previous tests where the blood counts had all started to drop off this is quite good news.

Jan and I met with Amit Khot, our BMT consultant, in Melbourne last Friday.  He was happy with progress and has kept me on a low dose of steroids to help with the lingering GVHD of my liver.  This is one aspect that will probably plague me for many months but being in the chronic phase is not life threatening.  Unfortunately the downside of remaining on steroids is the need to take a large number of other drugs to counter act the side effects.  I am down to around 24 tablets each day!

With Acute Myeloid Leukaemia (AML) the survival rates continually improve with each month that passes post Bone Marrow Transplant.  Unlike most cancers where after 5 years without a relapse you are considered to be cured with AML this milestone is around 2 years.  Most re-lapses occur within this timeframe.  If you are clear at two years post transplant then there is a 95% chance of survival.  They will never guarantee 100%!

Amit tells me my immune system is probably around 70-80% of a fully functioning system so although reasonably robust I still need to take precautions.  He has recommended using a mask when gardening or mowing the lawn to avoid fungal infections.

I asked my medical team if my bone marrow was now fully functional and although they have acknowledged this is stable and should not fluctuate wildly they would not say too much more – haematology is a non-precise science!

The other interesting fact is that my blood group will change to my brother’s.  I am O and he is A.

When people’s blood group changes, it is common to see a big drop in haemoglobin, sometimes requiring transfusion. Eventually I will transition from O+ to A+, and when it happens, I will see a Hb drop, or if the blood tests show that Hb suddenly starts to drop, it is assumed the blood group might be changing, and I will need to repeat a ‘group and screen’ (blood test), to see if my blood group is changing, and if there are new antibodies being developed.

Other matters

We have enjoyed being back in Tassie and had a few people over for a paddock BBQ one weekend.  Dougall had a few mates for the weekend including one of his buddies from  Yale.

Last weekend we travelled up to Wagga for various functions and stayed with good friends the Zacharia’s.  We haven’t seen Bernie and Zac for a number or years but it seemed just like the other day.  The Preddy’s joined us for dinner on Saturday.

My parents celebrated their 60th wedding anniversary and we had a wonderful family get together at the Hyatt Canberra Hotel which was the place of their wedding reception back in 1957.

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Week 65 – more blood tests in Tassie

This week I travelled into our local village, Campbell Town, for blood tests.  The doctor Myrle Gray was not 100% sure on how many tubes to collect but after a quick call to the pathology lab worked out that 5 was going to be sufficient.

She had some trouble with my veins telling me that they were quite calloused – no doubt from the repeated needles for blood tests over the past few months (and the blood donations over many years prior).

The results were encouraging although my haemoglobin had dropped from the magic 120 back to 112 this week (don’t tell CASA).

White Blood Cells were 5.3 and Platelets 74 (quite a drop from the last blood test of 97).  Neutrophils have also dropped from 5.4 to 2.9 and Creatinine is now 93.

My haematologist has indicated that the blood counts will bounce around somewhat from test to test  but I must admit I am a little concerned that most seem be trending downwards.  This may be due to the steroids which I am slowly being weaned off.

This week I have reduced the steroids from 5mg each day to 5mg every second day.  Hopefully I will  be able to drop them completely in two weeks, together with the other 30 odd tablets I take each day (well just getting below 10 tablets a day would be fantastic!).

Not a lot has happened in Tassie this week other than a few trips into town, some gardening, helping Dougall with some fencing and general farm duties.

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Matt Campbell, the mechanic servicing our Dingo with his helper.

I did attend a Firearms training course on Sunday, which is required to gain my firearms licence in Tasmania.  Unfortunately my NSW licence is not transferable.  The course was well run and I certainly picked up a few pointers.

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I spent Sunday afternoon at the Bracknell shooting range as part of the TAFE training program.
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A nice trophy on the wall at the Bracknell clubhouse.

 

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Sparky enjoying being a farm dog again.

Sparky made a trip to the Vet today as she has a few grass seeds in her legs that are causing her grief.  This is simply due to the fact that her legs are not long enough to get above the barley grass seeds – she really can’t compete with the Kelpies!

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View from our bedroom window. Dougz is mowing the lawn and you may notice the dead section due to my spraying the lawn with the wrong chemical! Oops.

I must say it is great to be back home, with some fresh air and sunshine.

Week 64 – CASA here I come!

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.

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CASA here I come (yes the drum is empty!)

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.

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Sam, Richard and George Tallis
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Sue Clark was also at the service but unfortunately Nick was too busy to get away from work!

 

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

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I managed to fit another bike ride in with Ross Williams around some beautiful Tassie roads and forests.

 

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Jan is certainly happiest when outside on the farm or in her garden!

Week 63 – the sites/sights of Melbourne

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).

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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.

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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!

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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.

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

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

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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!

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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.

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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.

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Cafes and Restaurants

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

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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.

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

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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.

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

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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.

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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.

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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!

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Week 62 -Blood tests in Tassie

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.

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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!

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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.

Ian and Cat

 

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.

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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!

BBQ

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

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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.

Week 61 – Return to Tassie!

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.

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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!

farm.jpgKnox 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!

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Week 60 – Climbing a ladder!

Now for the good news – my liver function has improved again this week and the trend is positive.  Although all enzymes are still not back in the normal range my medical team are satisfied that things are improving. Two of the 4 enzymes are in the normal range and the bilirubin (a key indicator) has been normal for a number of weeks.

The team have used this improvement to confirm that I do have GVHD of the liver but now that they know this they are confident the steroids will reduce this complication (with all the on-going side effects of course).

The other good news is that my Red Blood Cells (Hbs) are climbing week by week.  But as my now good friend James Watson said to me “I am using the middle road to temper my emotions with each week’s blood results.  I don’t get too down when they are low and equally I don’t allow myself to get too excited when  they look good.  They bounce around a lot and I find that allowing my emotions and feelings to move with the blood results can end up in disappointment.”

Middle of the road sounds good to me – so for this week we will call it a little ladder climbing up a bit higher but certainly not on the top rung of the ‘snakes and ladders’ game of life just yet!

I have put up a new piece in the Blog called Liver 101 for those who want to know more.

Exciting times

On the weekend I took delivery of my new (pre-owned) Adventure Bike – a BMW GS 800.  It was an exciting time and after kitting up I headed over to Williamstown for a run (about 30kms return) to test everything – well mainly me!  I haven’t done a lot of road riding so it was a new experience.

This bike suited me well as although the ‘big boys’ all ride GS1200s I felt that was a little too big a step first up.  This bike has factory lowered suspension making it much easier to get my feet on the ground when stopping.

I’m  looking forward to doing a few rides with mates back in Tassie but have to convince a few to kit up (Ian and Stewart that is you!).

We had a great visit from my sister Fiona and her husband Michael (Jan’s brother for those who don’t know) on the weekend.  They were back in Oz from Bangkok for less than a week but managed to catch up with all the immediate family – a big effort.

Their son Oscar who is at Melb Uni joined us for dinner on Saturday night – with Claire and Toby of course!  We enjoyed a great night.  Spot the ‘double cousins’.

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Movie Review

We managed to slip in another movie on Sunday afternoon – Swimming with Men – a quirky film showing as part of the British Film Festival in Melbourne.  It tracks a bunch of middle aged men suffering their own mid-life crisis who take to the pool with a synchronised swimming routine.  They find themselves being coached by a young female professional and head off to Italy for the world (unofficial) male titles where they come second to the Swedish team (actually played by the real Swedish team!).  This movie was another ‘feel good’ movie which is just what the doctor ordered.

Tassie here we come!

In the meantime we are now planning our return to Tassie – hopefully this weekend.  The final decision will depend on a meeting with our consultant Amit Khot this Friday and a medical plan, including an introduction to a haematologist at Launceston General Hospital – just in case I need oversight down there.

I will need to return on a monthly basis at least for reviews but blood tests can be taken in Tassie with results linked to the Peter Mac/RMH system.

So stay tuned – the next blog will hopefully be from the Apple Isle!

Week 59 – Liver function improving

The good news is that my most recent blood tests have shown an improvement. The ultrasound from last week showed my liver was clear of any clots or obstructions.  Blood tests revealed no sign of Hepatitis A or B and the CMV was undetectable.  The evidence now confirms GVHD of the liver which is treated with steroids.  As a result I have to remain on a higher level for another week before weaning.  The steroids have a large ‘knock-on’ effect in terms of lowering my immune system –  the medical team are keen to reduce the level ASAP.

Blood results from this week were again stable.  Hbs 93 – Wcc 95 – Platelets 161 and Neutrophils 6.6.  Both Magnesium and Potassium were down a little so as a result these tablets have been increased again.  The Creatinine for kidney function was once again in the normal range.

The liver function is monitored via the level of certain liver enzymes.  There are four enzymes that the team study closely and although two of the four are heading back close to the normal range, two remain fairly high.  Although not life threatening it is something that needs to be monitored closely with more regular blood tests.

Lots of things to do 

We’ve had a busy time over the last week with activities and visits as summarised below:

A two day garden tour of some magnificent establishments in the Dandenongs.

Caught the most recent “A Star is born” movie with Lady GaGa and Bradley Cooper.  This is a great feel good movie which is bound to bring a tear to the eye.  Highly recommended if you want a good night out.

Go-Karting with Dougall after a nice long bike ride along the Maribyrnong river. (he managed to beat me by a second on our fastest laps but I think I still remained competitive!).

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After talking to Ian Herbert in Tassie he reminded me to go out and live life and buy a bike to ride with him and a few mates when we get back home.  So Dougall took me shopping at the local BMW bike centre and I am now the proud owner of a GS800 adventure bike.  I’m not sure how I’ll go with this new mode of transport as I haven’t done a lot of road riding but it is certainly an exciting prospect!  Of course all my biker mates are super excited that I’ve now joined the dark side.

Caught up with Bev and Andy Irvine to walk Baxter the dog around the Yarra. (Don’t cry Andy its not all that bad!)

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A lovely catch up with backpacker Alex Sawday from the UK.  I first met Alex’s Dad during our backpacking days in the 1980s and have kept in touch ever since.  Our kids did an UK/Oz exchange about 10 years ago and Alex is now hooked on Australia and can’t keep away from the place.

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Toby and  Claire joined us for dinner on Monday with Alex Sawday.  Toby had recently altered a ‘rowing boat’ coffee table that Claire gave us after a charity auction.  The table is made from a section of an 8 seat wooden rowing boat.

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Continued with Pilates with Kennedy Lay at the Pinnacles Health group just near the newly named Marvel Stadium (Ethiad previously).

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A lovely dinner with my aunt and uncle Bruce at Joyce Hyles at the Atheneum Club in Collins Street – they were down from Canberra for a 8 day garden tour of the Mt Macedon area of Victoria.

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