Week 13 – Tue/Wed – Test results

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 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).

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What a great brother – here to help!

Week 13 – Monday – The Middle Way

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.

Week 12 – Friday, Sat, Sun – Friends and the Beanie!

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.

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.

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.

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Harry Youngman from Hamilton in the Western Districts

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.

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Michael McConachy is the proud owner of the Beanie for $750

 

Week 12 – Wed/Thursday – End of tests

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 11th and the Transplant will go ahead December 20th.  Tony, my brother has to be in Melbourne on 29th 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.

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The hyperbaric chair for overweight people – this guy is a normal size!

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.

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The growth of my finger nails clearly mark the two rounds of Chemo I have received – just like the growth rings on a tree!

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.

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Jan celebrates the 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.

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Week 12 – Mon/Tuesday – Back for blood

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.

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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.

 

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The new beanie – ready for auction. Time to bid!

 

 

 

 

Week 11 – Friday – Sunday. Playing Tourist

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!

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Lisa “Stewie” McSweeny made a surprise visit on Saturday

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.

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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.

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An afternoon drink (I’m on the soft stuff) with my parents and the Leans.

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.

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The new beanie – bids start now – all proceeds to ward 7B.

 

Week 11 – Thursday – more tests!

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:

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The extensive list of test I will undergo in the lead up to the transplant.

 

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!

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Coffee or Ambisome – I know my preferred drug!

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!

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Big breath and blow hard!

The bone density test involves another scanning machine.

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Bone Density test

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.

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Close shave with some nasty drugs for the heart test

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.

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This will be a good read.

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!

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Guys like this keep people like me alive!

Week 11 – Monday-Wed -Time for tests

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!

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The new beanie – ready for auction. Let me know if you want to be involved in the auction.

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.

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!

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 20th

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.

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Just a sample of the blood tests completed on Wednesday (18 tubes for this test!)

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.

Week 10 – Friday – Sunday – The beanie is ready to go!

I can’t provide you with information on my blood counts as the doctors have scaled back the measurement to just every second or third day.  They are obviously happy with how things are trending – and I can only assume upwards!

HITH have been making their usual visits to keep the IV Ambisome on track.  They usually turn up in the middle of the day but I now have them ‘trained’ to let me know early on what time I can expect them.  This helps a lot if we want to go out for a walk or bike ride, meaning I don’t have to hang around all morning waiting for their call.

As with the previous few days things are moving along well.  No pain, headaches, shortness of breath etc.  From time to time I have felt a little nausea following meals so I have added an antiemetic tablet to the routine.  This seems to have helped the situation. But on the flipside I have now finished the course of special drugs from the USA – Midostaurin.

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I have now finished the special USA drug Midostaurin after a two week stint – yipee!

I achieved a first on Friday with cup of coffee with an old friend from the childcare days – John Collins.  This was the first cup of coffee for almost 3 months.

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My first cup of coffee for almost 3 months with John Collins

We managed to get out and hire a small 100hp runabout boat on Friday to motor up the Yarra river.  Given that the temperatures had now warmed up in Melbourne (25 now) this was a pleasant evening.   As we putted up the river through the city it was obvious that everyone else was enjoying the warmer weather – the riverside bars and pubs were bursting with activity.

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We hired a small boat for a trip down the Yarra on Friday. We’ve decided to see our extended stay in Melbourne as a holiday rather than a medical appointment!

Saturday and Sunday involved some great bike rides around the city – over to the Botanic Gardens and along the Yarra River.

We enjoyed a big breakfast with Fe and Andrew Tucker from Wagga on Sunday morning.  The Tuckers were down for the races with some Wagga Friends on Saturday.  Their son Henry is great mates with our Dougall.

Sunday afternoon’s bike ride was with the Rouches – new Melbourne residents originally  from Wagga.  We toured the  Yarra west of Docklands along Lorimer Street.  And as another first since being ill I managed to down a light beer at the end of the day – such a delight!

Beanie Auction

The second beanie has been finished for a few days now and it is time to test the crowds.  Plenty of people had requested a beanie after my first attempt (which has been very handy with the cold Melb weather early in the month).

Rather than a straight auction I am opting for a “RaffAuction”. All proceeds with go to Ward 7B at the Royal Melbourne Hospital.

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The new beanie – ready for auction. Send your expressions of interest in to participate – $10 donation for each expression.

How does this work?

Simple – anyone who has an interest in being involved must put up $10.00 as an “expression of interest”.  This is non-refundable and will go to the Hospital fund.

Then everyone who has passed this hurdle may enter a ‘silent Auction’ where bids may or may not be seen by others.

You can bid by comment on the blog, private email from the blog or directly, by phone or by text.

The highest bidder will get the beanie with proceeds going to the Hospital.

The “RaffAuction” will run over two weeks with the first week just for expressions of interest.

The second week will see the Auction take place.

I look forward to your participation.  Let me know if you are in!  Payment details will follow with the next blog.

Week 10 – Sunday – Thursday – Blood counts are heading up!

You may have noticed that the frequency of the blog has dropped off a little – mainly due to the fact that nothing has happened of note with regards to my health.  I remain at home with HITH visiting daily.  No high temperatures, no headaches, no pain, eating well, sleeping well and no vomiting or diarrhoea – all the things that the nurses want to now with each visit!

I was due to receive two units of blood on Monday (blood transfusion basically) but when I arrived at the hospital the team decided that my red blood cells were doing OK and I didn’t need this now.  So from there I made a visit to the HITH office for the daily routine (saving them a trip out to Docklands) and proceeded home.

Most days follow a routine of a morning walk, breakfast, reading, knitting and filling in time.

Wednesday was an exciting one as I ventured out to the shops and purchased a bicycle, to save hiring one each time we decide to go riding.  I had been warned not to ride too soon when recovering but I think the time is pretty good now. Riding a bike around Melbourne is a great thing as there are so many dedicated bike lanes keeping you away from the traffic.

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I purchased a bike during the week so we can ride around Melbourne to see the sites – becoming a tourist!

My blood counts have bounced around a little since being discharged.

The Red Blood Cells (Haemoglobin) have climbed from 84 to 101 but on Wednesday dropped back to 85 – very close to the cut off level of 80 where I will receive a transfusion, but back to 95 on Thursday.

The White Cells have climbed from 2.1 p to 3.0 (4-11 is normal) but then dropped back to 2.5 at one stage and are now back to 3.4.  Apparently this is normal when recovering from Chemotheraphy.

The platelets (for blood clotting) dropped from 31 down to 25 and then climbed back to 28 – all low numbers when the normal range is 150-400.  This is why my doctors don’t want me on a bike.  An accident with bleeding could be serious!

The all-important Neutrophils have climbed from 0.3 at discharge up to 2.3 (normal range 2-7.5) which indicates my immune system is getting back on track.

So on Thursday HTIH rang to say the nurse wouldn’t be coming out until the afternoon but as I was keen to get the new blood tests and not waste a day waiting around I suggested we come in and make a visit at the hospital which they agreed to.  (To make this easier we decided to take the bikes rather than walk.  Walking takes around 45 minutes but the bike around 15 or 20). Dr Jess if you are reading this I was very carefull and survived the trip!

HITH have informed me that they will only do blood tests every second day from now on – obviously the doctors are confident things are heading back up into the normal range again.

So armed with that information I have been happier to ‘venture out’ with the necessary precaution of wearing a mask when around crowds.  Jan and I biked over to Crown to see the film ‘ Murder on Orient Express’  We both enjoyed it and I’d recommend it.

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We headed off to Crown in the afternoon – not for a bet but to catch a movie in Gold Class.

I’ll update things when more information comes to hand.  Next week is a big one for me with lots of appointments and tests.