Article for AML News

I’ve had an interesting few days on the medical and family front.

On Thursday I had yet another appointment with the Infectious diseases consultant to review my lung and kidney function prior to transplant.  The good news is my lung infection is all but gone, although the doctors would still like me to continue with the antifungals just in case in flares up again during transplant.

And my kidney function has continued to improve although it still is not back into what they would call the ‘normal range’ for Creatinine clearance.

I had yet more blood tests on Thursday to check on these and other matters and also had the “Hickman” central line dressing changed – a weekly event.

On Friday we were back into the hospital for final discussion with the Ward 7B pharmacist, Emily, regarding the next round of drugs to back up the chemotheraphy and transplant.

The initial round of Chemo will be delivered at home by HITH, starting December 27th – which will mean I will have another 5 days at home prior to being re-admitted to the hospital for the last dose of chemo and the transplant on January 3.

But the big news was the family get together.  On Wednesday night we managed to get almost all the Hamilton Clan together for a pre Christmas dinner (we missed you Henry and Georgie).  My parents once again travelled down from Cootamundra – this time with Claire who had arrived from Perth last Friday and was up in NSW visiting friends.

My brother Tony and wife Katy, drove down from NSW via the coastal route.  Tony was required for more blood tests prior to the transplant.  Their daughter Amy flew down from Canberra to join Katy for a day at the art galleries and the dinner.

And my sister Fiona and brother in law, Michael (Jan’s younger brother!), also flew down with son Oscar – they are in Molloymook for their Xmas break from Bangkok.  Their daugher Georgina is in Singapore working an internship.

And on Friday we were surprised by Dougall’s arrival back from the US.  Well Jan and I knew he was coming but others were unaware as Dougz had been planning on Xmas in the US but managed to organise the trip home in time. Dougall had a little ‘run-in’ with US Border control when he passed through security on a trip in October when they found a live 22 calibre bullet in his carry-on luggage.  He was issued with a court summons for Jan 9 and spent the best part of November sorting out how this was to be dealt with!

The solution only became clear in the last week when his New York attorney and immigration attorney assured him that he could travel home and that the matter could be dealt with in his absence.  We were all concerned about the maximum possible penalty of one year’s jail but we have been assured this is unlikely.

It was great to spend some quality time with the Hamilton family prior to my next round of Chemo.

Today’s blog is by a guest contributor – hope you enjoy!

Patience.

Well, maybe, but just for the short term.

Short term of a long life?

We are children first, learning to walk, school, uni as teens, them hit the work force for some 45 years. What a hoot.

45 years!

Then retire, and live for another 20-25 years doing other stuff.  Not that long ago workers were only around for a few years after retirement – they were worn out?

So, for us, semi-retired folk, or, fully retired earlier, we just do stuff that we enjoy.

Some things we do is habitual, and some of it isn’t.  In the main, the list might look like this;

Read, walk the dog, walk the beach, fish the beach saying g’day to all and sundry swapping stories, going for a group ride followed by a coffee and planning days ahead; volunteering – RFS, Rotary……..talking of past and future achievements and aspirations; learn a language, converse; join a choir, learn a new song part, drink a pint at the pub afterwards with a chat about this or that; plan a holiday – discuss options study wines that you might like to try and order them in, share the odd bottle with a mate;  that sort of thing.  Morning nap; exercise routine;  work out who delivers the best national news; etc….

You have been presented with something very out of the ordinary, and with the support of your huge array of friends, and your magnificent family you are travelling the journey well – at least that is what your terrific and informed blogs are telling us.

30 years through the work cycle, and a bit of a glitch.

Hopefully one that will need attention for the next couple of years and then you are home free.

Just a lifestyle change in the interim.

And then, back into it.

Job done.

Cheers Geoff, catch up with you soon.

Andrew Irvine

Patience is “the ability to accept or tolerate delay and suffering without becoming annoyed or anxious”.

I have thought a lot about this in the last few weeks.  In the early stages of thetreatment for my condition I was hoping that the first round of Chemotherapy would be done within a month and all being well then I could move into a Stem Cell Transplant (bone marrow) a month later – but of course as you know I had to go through a second round of treatment which took another month or so.

Then I had my focus on the transplant for early December with the worst of it being over by Xmas, but as you know due to the problems with my lung initially and then my kidneys this was delayed until the New Year.

What do these delays mean?   And how should I take this given my desire to complete the process as quickly as possible with the aim of returning to a ‘normal’ life as soon as I can.

The delays mean several things:

• The best possible outcome will only be achieved with my internal organs being in the best possible shape prior to the transplant.
• The extra delay over Xmas has meant I am relatively well over this period and can enjoy some quality time with my family.
• The delay has reinforced the need for patience and the importance of accepting that things won’t necessarily run ‘to my time frame’ – something that has taken me a little while to get used to!
• Patience is required here – I need to manage my time without letting boredom creep in.
• I need to manage time without becoming anxious or annoyed.  The process is the process!

And in questioning my consultant further I have realised it will be a long road back to health.  After the transplant I will be in hospital for at least 3 weeks.  Following that for the first 100 days post transplant I have to be close to the hospital for blood tests every second day – more patience.

Following that I have to be prepared for regular (maybe fortnightly or monthly) check-ups until the 6 month mark, during which time I will be immunosuppressed by drugs before receiving some of my childhood vaccinations again.  More patience required!

And following that the first two years post transplant is the key to my long term health.  The medical team will keep a close eye on me and watch the ‘Graft vs Host’ battle that will be raging in my body.  Patience will be required.

I may get sick during this timeframe and there will be times when I will need to be treated with new drugs or perhaps even hospitalised.  More patience required.

So understanding patience and how to deal with the annoyance and anxiety that might creep in is a big part of my mental challenge with my treatment for Leukemia.

On Monday evening we had an unexpected visit from Bruce and Anna Allworth from Holbrook.  They were returning from a quick visit to Tassie and had only recently heard of my condition so looked us up and dropped by for a cup of tea.  It was great to see them both again after a few years.

Rather than send out written cards (which you might have noticed we haven’t done for 10 years or more) we thought an e-card might be the go! And I guess most of you are pretty up to date in the ‘goings on’ in the Hamilton family – I can’t add much more!

I’d especially like to thank everyone for your lovely comments and messages of support during my recent time in hospital and at home.  As I’ve said before these messages are certainly keeping me in fine spirits and well prepared for my next stage of treatment.

Jan and I hope you enjoy a relaxing and safe Festive Season and fulfilling New Year.

This weekend was great from a medical point of view with no complications what so ever.  And we managed to catch up with a few friends around Melbourne.

It was been a while since we have seen Claire and we were thrilled when she flew over from Perth on Friday night for her Christmas break.  Claire is looking fantastic at the moment with her new short hair look.  She travels with Mr Rabbit who has been a childhood toy from birth.  There is no show without Mr Rabbit – even at the age of 26!

The famous Mr Rabbit looking a bit worse for wear!

We headed down to Port Melbourne Sat morning to catch up with Jeremy Twigg – an old friend from Trinity college days.  Jeremy has recently completed his MLC (Mid-life crisis) with new partner, new house and a Harley Davidson!

The Bradley family from Tassie were in Melbourne over the weekend for the Paul Kelly concert and dropped down to Docklands for a quick catch up.  Rob and Jo and their children Hugh and Ingrid are farmers and operate a mixed farm and a large dairy. They were in very good spirits given the mini boom the ag industry is enjoying at the moment.

On Sunday we caught up with Julia Ham from Tarcutta.  Julia is a long time friend who helped us out in our busy childcare days.  She had lots of family news which is keeping her family very busy at the moment.

We managed a trip down to the NGV to check out the new exhibitions and enjoyed a ride back along the Yarra river.  Sunday was an almost perfect day in Melbourne with mild temperatures and sunny skies.

A huge tapestry carpet of a river was a star attraction at the NGV.

One of my favourites!

The good news from this week has been my kidneys.  After a set of blood tests on Thursday the lead specialist contacted me to say things were looking up with my kidney function.

You may recall that the Creatinine level was at a worrying high level of around 200 a few weeks ago when I was taken off the Ambisome drug (for my lung infection).  The Ambisome had worked its magic on my lungs but in doing so had created havoc with my kidneys – causing a large reduction in their effectiveness.

The Creatinine level is now down to 140 and is predicted to reduce to around 100 in a week or so in time for my Stem Cell Transplant (the normal level is around 60-110).

The consultant, Amit Khot had just returned from a conference in the USA and was pretty rushed when he rang through the good news – but was very pleased with the result.

In the meantime my brother Tony has to return to Melbourne again for more blood tests as the previous tests are only valid for 30 days and by the time of my delayed transplant it will be 32 days!  Rules are rules I guess and we have now turned his trip to Melbourne into a Hamilton family Christmas gathering with my sister back from Thailand and Claire back from Perth.  It should be fun.

The other piece of interesting news was Sandie Baskin rang to inform me the Beanie auction has raised well over $3500 for the new ‘garden’ at Ward 7B.  The lastest thinking is to turn the enclosed area into a kinetic sculpture garden and Sandie wanted my thoughts on the plans they had to date (most likely in anticipation of another donation!)

To break the monotony of bike rides around Melbourne we decided to take a Helicopter tour of the bay and the city.  This was a special occasion in a nice red EC 130 helicopter.  I managed to get a front seat next to the pilot (just to keep an eye on his procedures).

Lachy and his girlfriend Hanna joined us as well as Jan’s uncle, David.

Note from Jan: Dave the lovely helicopter pilot made it quite clear that he was to be the only one “pushing the buttons” in  the front. I think he could sense Geoffrey’s itch to get involved!!

From a medical point of view the last few days have been great.  As per my last blog I have been feeling well and don’t even see my self as being ‘sick’.  I have not had any tests or hospital appointments so can’t report in there.

But I have made use of the time in Melbourne to catchup with a few friends and do a few more things.

On Monday Catriona Nichols made a visit (and stayed over).  Cat is a communications specialist working as a freelance consultant in the Ag sector.  I first met Cat during my Kondinin Group days back in the 1990s.  We have kept in touch ever since and as Cat and husband Ian are Tasmanian residents they would be partly responsible for our recent move to that state.

Cat Nichols stayed with us on Monday night.

On Tuesday we drove up to Bendigo to catch up with one of our past Managers, from our childcare days – Kirsty Jensen.  Kirsty is now managing a huge 130 place centre for another friend of ours Matt Kibble (who in fact built a number of centres for us when we were developing for ABC Learning, and also our Freshwater Apartment complex in Kununurra).  Kirsty is a great manager and seems to be coping well with all the stress!

On Wednesday I had an exciting day with Jan’s parents, Allen and Helen,  we visited the wool stores to check out their wool sale.  The wool industry is booming at the moment (after many years of being in the doldrums) and today’s sale was at record prices for the Sheridan’s – they were certainly very happy farmers!

I also caught up briefly with Peter Lang, of Hawker Pacific.  Peter has been a great friend and colleague from the Aviation Sector and was in Melbourne for business so dropped down to Docklands for a quick chat.  We talked all things Aviation for an hour or so –  it certainly is something that I am missing at the moment.

The wool auction video below is a strange sight.  A bunch of men yelling prices out with lots being sold in less than a minute makes for an exiting spectacle!

We have just spent another lovely weekend touring Melbourne and catching up with friends – some of whom we haven’t seen for years.

The problem I am experiencing at the moment is that I feel quite well!  It is a great problem to have but has prompted me to question “am I actually sick?”

In fact Jan has developed some sort of chest infection and is coughing a lot, which obviously makes me nervous but what to do when your carer, hospital advocate and wife ends up sick?  Who is the carer now? I have taken on some of the cooking and caring but have not taken the step of donning the face mask 24/7 – perhaps I should.

I keep waiting for the first signs of Jan’s illness to appear in me but so far so good.

So who is sick – Jan or me?  And what is sickness?

The dictionary tells me it is being ‘afflicted with ill health or disease or affected with nausea’.  Perhaps it is a state that we are constantly cycling in and out of all our lives.  As our parents get older (and ourselves also) we seem to spend more time discussing our ailments, tablets and ill health and less on our good health!

My stemetil tablets have taken care of the nausea so under the definition it is back to ‘ill health’.

And this is where the problem lies, I don’t fell sick – I don’t show any signs of being unwell but the doctors tell me that the leukemia I have will re-appear within 9-12 months if I don’t proceed with the next phase – the Stem Cell (Bone Marrow) Transplant – and they also tell me the transplant will definitely make me sick – nausea, diarrhoea, difficulty in eating, swollen mouth, irritable bowel etc etc.

This is all very confusing!

I would prefer to keep going as is – no headaches, no pain, no nausea, no shortness of breath, eating well, sleeping well and keeping fit with walks and bike rides every day.  Enjoying life.

So can you be sick and not feel it?  Well I don’t think so.  Perhaps unwell or ‘affected by….’ Is a better description of my condition.

I will go with being affected by (I hate the notion of suffering as I am clearly not suffering at the moment) leukemia.

Weekend catchups

We biked along the Yarra to Richmond for our first catch-up on Saturday with Andrew , Jan’s brother (known as Dreamy in our family!!) .  These two are very close and enjoy their discussions – a lot of which revolves around Dreamy’s young family.

We were then lucky enough to catch up with Ruth Bailey who made a special trip down to Melbourne to see us (and slip in a bit of Christmas  shopping I think).

The last time I saw Ruth was when we were sailing at Hamilton Island just before my being affected by Leukemia. Her husband John was the white knight who organised the aero-medical flight from Launceston to Melbourne.  We had the time to catch up on lots of family comings and goings.

And on Sunday we took a drive down to the Mornington Peninsula and caught up with an old Sheridan family friend Rod Symmons and his daughter Georgia. Unfortunately for us Rod’s wife Di was enjoying a grandmother/granddaughter weekend away with Georgia’s daughter Mietta.

And after that we motored down to Somers to see some long lost friends Leigh and Andrew Williams.  These two met way back in the 1980s when Andrew was jackerooing on our farm at Condobolin in central NSW.  We had years of time to catch up on so the afternoon went very quickly.  As you can see Leigh is the chatty one!

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.