Article for AML News

Dear readers – I don’t have much to report other than I am still out of hospital and enjoying being at home.  The days seem to whizz by but I’m not really counting anymore.

On Monday I was required to go back to the Peter Mac hospital for a blood sample which was pretty straight forward.  The wait was only 30 mins once I had cleared my paper work so for a pathology lab that is pretty good (anyone who has tried a fasting blood test will find big queues of similar people at their local pathology lab – just waiting to get it over with and have some breakfast!).  The good thing about the Hickman line is no needles are required and it is so quick to extract the blood – straight from the heart.

Jan took me on a little shopping excursion that morning to look for some new household items missing from our ‘home’.  Lots of walking – about 10,000 steps with a few items purchased.

Also today Jan framed and I hung the drawings done by Ned (7), Maggie (7) and Jack (6) Sheridan to remind my bone marrow what it should be producing. The kids drew these images after checking out the info on the Haematology 101 pages of the blog. Thanks guys, I see these every time I get up out of bed.

Monday was a glorious day weather wise so Lachy took me back out for more drone lessons – on the pier just west of our apartment.  Things were going pretty well until the Drone lost its GPS signal (luckily only briefly) and it wandered off track. The only problem with flying the drone in Melbourne is the lack of good open space.  I managed to get a few good pics of him skating on the old Dockside area of Docklands.

 

 

Tomorrow is the big day (test results from the Bone Marrow Biopsy) so I will make sure I report in.

PS.  I received a lovely Penguin book in the mail today titled “A Confederacy of Dunces” it came direct from the Hill of Content Bookshop, but no name or sender details  – if anyone knows anything about this – many thanks!!

Since my last blog time has moved on pretty quickly.  We have been lucky to have a few visitors pop in including David Foster (Down for the Footy grand final) and ex neighbours Steve and Jenni Butt and Harry and Min Youngman from Hamilton.  On top of that my parents have been in Melbourne for a few days with regular visits to our apartment. (They chose to return to Cootamundra on the Sat night XPT but found it was 1.5 hrs late in leaving – getting them in at 3.00am.  Not bad for 80 year olds!)

 

On one day I walked (or my parents walked me) over to the Melbourne Star (the large viewing wheel equivalent to the London Eye) for a scenic view of Melbourne.  I think my parents were more fascinated than me but then again I get a similar view most times we fly into Essendon.  When our cabin reached the top of the arc we had a clear view back to our apartment in Docklands and I texted Jan to wave the red flag from the balcony.  And believe it or not we could see her from the Star clearly (probably only 1.5kms away).

Most days have entailed sleep, eat, rest, eat, eat some more and reading or TV.  Very restful really but despite all the eating I have not been able to put on weight, maintaining a steady 77.0 kgs which is about 8 kgs less than my normal fighting weight.  This is the weird thing prior to my illness I had to watch my food intake carefully as I’d easily add 1-2 kgs after a week of ‘ good living’.   Now I am having 8 or so meals a day including protein thick shakes and smoothies and not putting on weight.

All that I can conclude is that my body is soaking up all of the nutrition for repair.

Saturday morning I had trouble with the dressing on my Hickman line (the cannula to the heart) and had to call Ward 7B for instructions.  They suggested I came in ASAP for the dressing to be changed, which resulted in a great outcome, 2 hrs later.  Not bad for hospital time!  I tried to get my results from the Biopsy but the nurses were not allowed to release this (even if they have it), so unfortunately it will be a wait until Wednesday when I see my consultant John Seymour.

Sleep has still been a bit of an issue, although I seem to be averaging 6 hrs a night with a few breaks. The 4.30am wake up has been a constant although now with Daylight saving this bumps it to 5.30 which is much more respectable.

Lachy has been down in Tassie this weekend and is bringing Jan’s car back on the Spirit of Tasmania, Sunday night.  We took the opportunity to give him a long list of things to bring home such as clothes, hats, a few documents, a painting and my bagpipes!  I reckon if I can play the bagpipes I’ll know I’m almost cured!

So at the moment life is pretty good.  I am comfortable at home, Jan is cooking me lots of lovely meals, we’ve had a few visitors and I’m resting up for the next round of Chemo.

Although Wednesday was a pretty quiet day the big news was my brother Tony was identified as a positive donor for Bone Marrow!  This was great news and in fact made my day.

I received this information from Liz O’Flaherty the bone marrow donor co-ordinator after I had emailed her seeking some information , it had been over two weeks since Tony was blood tested and Fiona swabbed for samples.

Liz replied “Hi Geoff, Yes we have great news for you! Your brother Tony is matched and a suitable donor. I have informed John Seymour and he was going to share the news with you at your appointment next Wednesday. Could you let Tony know?”

Let him know!  I was on the mobile straight away to my brother but unfortunately he was out of range.  Having eventually contacted Tony and sought his approval I let our entire family know the good news via our Family (Immediate) and Sibs (extended including grandies) WhatsApp.

The messages of relief started flowing in.

Fancy Liz thinking I’d like to wait another week almost to get the news from John!

This was in fact contrary to all family thoughts that my sister Fiona would be the best donor match.

The Doctors say there is only a 25% match with a sibling but in fact my clever son Lachy worked out the statistics based on two family members – no it is not 50% because as he says it is like rolling a 4 sided dice (25% chance per side).  After two rolls (two siblings) the chance of one matching rises to 7/16 (44%).  So this time I got a lucky roll!

Late on Wednesday afternoon we met up with Jan’s brother Dreamy and his partner Heather and their children Maggie, Ned and Jack in the local park. The kids had each  drawn their interpretation of Geoff’s immune system after reading about the immune cells on Haematology 101.

Thursday panned out at as per expectations – awake at the usual 4.30am for some meditation.  It took me 1.5 hrs to complete a simple exercise.  That is to take 27 deep breaths, counting from 27 to 26 to 25 etc etc to 0 without the mind wandering.   Try it!  I mostly got stuck with my mind wandering off prior to reaching 20.  Interesting exercise.

We were up for an early walk around Docklands and the marinas before showering and heading off to Peter Mac (Cancer Institute) for the Bone Marrow Biopsy.  No breaky as I was fasting.

The Biopsy went well (I chose the light sedation this time rather than just local anaesthetic).

Todays blood results show a big improvement, Hb at 113 almost back in the range), Platelets at 276  (back in the range) and Neutrophils 6.4 ( well back in the range)

From there it was back to the apartment to do errands and for the usual eating (at present I am losing around 0.5 kgs per day even with eating 8 small meals a day!), reading and sleeping – bliss really!  This is something I have never come across in my life.  Putting on too much weight is the normal problem for me.

My parents are on the train this afternoon down from Cootamundra for a few days visit.  It will be good to see them again in my home environment rather than in hospital.  We will meet them at Spencer Street Station and walk them to their apartment before having dinner at our place.

I’ll wait a few days for the next post so everyone can get over Grand Final Fever!   Good luck to your teams but for me it is the Tigers and the Storm.  Cameron Smith is a true legend as is Billy Slater.

 

Today’s blog is one of bliss. Sunshine, cool start on my 6.30am walk with Jan but a glorious sunny day throughout.  Why can’t Melbourne turn this on more often? (A: because it would not be Melbourne!)

After 6 or so hours of uninterrupted sleep I woke at my usual time of 4.30am to plan the day (and join Jan in a meditation session).  Off for a walk and then breaky etc etc all boring stuff, but for me Bliss, there is nothing like sleeping in your own bed!

The day involved a few calls in the morning and a lovely home-made sweet potato soup then quick nap (1 hr thanks!) before heading down to Port Melbourne with Lachy for my first real drone lesson.

Lachy had spent some time last night using a simulator to show me the controls but nothing beats the real thing!  We found a great spot at the Western end of the beach and spent the next hour or so together flying – yes can you believe it flying again so soon!

 

But where to from here?

My program for recovery is a moving target at present but this is what I do know:

Bone Marrow Biopsy Thursday – results in 2-3 days (early next week).  This one is critical for planning the next step in the recovery process.

If the Biopsy goes well then we seek the Bone Marrow Donor – my brother Tony, and sister Fiona have both been tested but we have no answer as to their compatibility yet – both are willing but the blood stars have to line up – there is a 25% chance.

If they don’t match then the Medical Team search the world database of Bone Marrow Donors (30 million peoplemost of whom are in Germany apparently).  Other family members ie. Father, mother, son, daughter do not come close due to the basic Mendalian theory of cross breeding.

If a match is found then I go through another round of Chemo to nuke all cells again (just to make sure) and the Bone Marrow Transplant occurs.  After that there is more time in hospital but I am not sure of the periods.

If a match is not found immediately I would need to report back in to hospital fairly regularly for Chemo and other tests until a donor is found.

If the Biopsy delivers an unfavourable result ( the White Blood Cells  blasts are the ones they are interested in – they must be less than 5% of WBCs they were 79% of my WBCs when I entered hospital 4 weeks ago!!!) then we are in for a much longer ride.

Basically I am re-admitted for another round of Chemo (let’s call that a month) and we go through the Biopsy process again (and again if needed, and again).  I can see the months ticking by……….

Leukemia (apparently that is the American version!) or Leukaemia for the more traditional/British (both are OK) is not a short term disease.  This process may well go on for 6 mths or more.

All that I can say is I am in fabulous hands with the Medical Professionals at RMH and they are doing an excellent job focusing on me as an individual and looking at the best ways for me to Beat Leukemia.

It has been a wonderful having Claire and her boyfriend Nick over for a long weekend.  Claire’s cooking is amazing and Nick has now delivered a master class on how to edit videos and add music – new skill for the old dog.

As of tomorrow I am backing off on the daily blog and will look at every 2 or 3 days.  No one wants to read about my breakfast or daily walks!  Rest assured I will keep new information coming as I think this is the best way to inform my family and friends about progress – and for some strange reason people keep reading the Blog and sending me lovely messages – which I am truly grateful for.

 

 For those with the medical/technical mind Jan has uploaded a new Doc under Haematology 101 which covers the basics of Leukemia.

 

 

PS The Dog nearly peed on my new drone prior to takeoff!

After spending more than 25 days in hospital today was the day when I was to be released on a “hospital at home” program.

The medical team made an early visit with some excellent news.  They had worked out a way to convert all of my medication to oral (pills) rather than a combination of Oral and IV.  This was a game changer as it now meant that I could self administer (with Jan’s help of course!) the myriad of drugs that I needed and would not need an IV drip for the fungal treatment that I am on.  Happy Days!

This news meant that rather than waiting for the full day for the last IV dosage I could more or less pack up and go.  This was at about 9.30am so I started thinking 20 minutes and we are gone – until I remembered the good old “Hospital Time” saying that had been plaguing me for the past 3 or 4 weeks – nothing moves quickly in a large public hospital!

And it looked like other than returning for some blood samples and the Bone Marrow Biopsy I could be free at home without drips and buzzers for up to a week.  Happy Days!  I should make it clear that I have no complaints about the standard of care and support at the hospital.  The nurses were all fantastic health care professionals but it is the lack of sleep that almost kills you (they say sleep deprivation is a form of torture and I can see why).

Before I let the medical team go we had a paper plane throw off with the planes I had made today.

So after packing the room (it took ages to remove all the photos and cards – thankyou everyone), it was a long wait to get Kate the Pharmacist to package together the drugs I would need for the next week.  We also had a visit from Lisa, the dietitian explaining the benefits of home cooked meals.  With Jan (and Claire for a few days) in charge of cooking this was not going to be an issue.

Poor Kate was so worried about holding us up that she personally walked down to the Pharmacy to collect the goodies.  Once back it took about 30mins to go through the drugs, amounts to be taken and the timetable.  I was thrilled – at last we could set the agenda for most things to ensure sleep became a priority.

Just as we were to leave we asked about sleeping tablets.  And then the Hospital clock went into overdrive!  Unfortunately this was going to require a doctor for the script and all doctors were out of the ward at that time.  Another 30 mins and we had our script and at 12.37pm I walked out a free man!

As Jan drove me back to Docklands (our Melbourne home for the time being) the biggest thing I noticed was the glare from the sky.  It was a typical overcast Melbourne day but for me having just had 25 days inside I found I had to close my eyes.

Walking in the door of the apartment was magic.  Finally back in familiar territory and Claire and Jan to meet me with a huge bunch of lovely flowers.  I spent the first hour or so just walking around looking at what changed or just how beautiful our lovely apartment was.

Being in Hospital for 25 days certainly makes you appreciate the simple things in life!

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I had been enjoying some free time as for the first time since treatment started I had all lines removed from the IV machine and I was free to walk around.  Jan was keen to take me over to the Peter Mac building as it is marvellous architecture and has loads of artwork on the walls.  It really is a fabulous building and if anyone had a spare 20 minutes in Melbourne one day I’d advise a look.  It also contains the LOFT café which today served the best chocolate thickshake I’d had in many a year.

Surprise visit today.  I’d just finished a nap and Kaz and David Hodge called by with a card and present (paper aeroplane kit) just to cheer me up. It was great to see these guys who were down in Melb to see the Tigers smash GWS last night (I think they were still suffering!).

But the big news today was from the medical team, they are happy to release me from hospital for a few days for home treatment.  This basically works with what they call “hospital at home” and a nurse makes a daily visit to check on the IV system and do normal observations.

This should happen late on Monday but as you know I am thinking of just  one day at a time so will cross that bridge when I get to it.

However this got me thinking as to where home is?  Strange thought but we intentionally used our Docklands address when checking into the RMH as this was simple.  A Tasmanian address may have complicated matters.

In my mind Milford, our Tasmanian property is certainly home and has been so since our move at Xmas time.  But for the next 6 mths we are most likely to spend more time at our second home in Docklands.

Back to Tassie- the farm is green most of the year around (with the exception of drought) and although winters can be cold and wet, this year seems to have been pretty mild.  Our house was built in 1835 by the convicts for the first treasurer of Tasmania.

It is a two story brick and sandstone construction with a maids quarters and 4 room cellar. We recently renovated the house ( well mostly under Jan’s close supervision) and it is a beautifully comfortable house to live in now.

Pictures tell a 1000 words so have a look. ( you might be able to spot the new Proway yards that have recently got a mention on Macca’s Australia All Over program)

Unfortunately we won’t be back here for a while but it is still home and I hold the image strongly to help with my recovery process.

Thanks to Nick van Hattem for putting this little video together and MKS for the excellent footage:

Today has been a great day again (despite the lack of sleep).  In Melbourne it has been a warm and sunny spring day although inside the hospital you would never know – just steady at 21 degrees.

My progress has been good and the Neutrophils are now well up (in fact in the normal range) at 2.2.  Red and white blood cells are also doing well.  I am eating normally (almost – with the caveat that the hospital food is not normal) and my fluid intake seems to be keeping people happy.

 

 

I have received fantastic feedback from readers of my Blog.  It is doing exactly as I had hoped – keeping people informed of my progress (the interested few!) and saving me from the impossible task of talking to my well wishers with the same story each time – or even texting the well wishers with the same message.

But sometimes I ask myself – Why am I doing this?   Back in the good old days pre social media people didn’t write blogs or group messages and people survived.

My answer is simple – the support and encouragement I get from my friends and family is an extremely important part of my recovery (maybe I am being self-centred here) and in order to gain such great feedback I have to give something!  It is pretty simple to sit down and write 400 odd words most days (I have struggled on some) and I’ve tried to provide an update on the current medical situation with as much accuracy as possible, plus throw in a bit of Geoff Hamilton philosophy – for better or worse.

If I had to choose my favourite piece so far it would probably be “Getting the affairs in order” – there is a message for all families and business people here.  I know of at least one couple who have made some significant business changes in recent weeks to potentially see their business survive a sudden and drastic illness of one of the two key people.

Another favourite would be “Gratitude”.  This one comes largely from conversations with Jan that “Happiness” is one thing “Gratitude” is another.

So today’s Blog is about the Blog – bit like putting a mirror on a mirror – you see a long way!

 

My little trip with my friend Endone helped my back pain to no end last night and when topped up with Panadol I managed to get one of the best sleeps since arriving (still only about 4 hours but pretty much unbroken).  Wide awake and ready to go at 4.00am is probably a little early so after a few more nods I hit the road (treadmill) at 6.30am feeling pretty good.

Tim, my nurse for the morning shift was happy to bring in the new blood results.  Red 86, WCC 1.5 and best of all Neutrophils 1.2 – we are away!  These should build pretty quickly from here.

AND today is the first day where I don’t have to down the smelly, greasy, yellowy Midostaurian drugs  – that course is now complete!  Another reason to celebrate.

So from this point I should start returning to a more ‘normal’ life – if such a thing exists.

I received some marvellous cards and books from friends today – thankyou so much!  And a special bonus in my first every “Disabled Car Park”card – no more long walks to find a decent park!

I’ve had a bit of time to think about the matters that I am grateful for and there are many.  Jan had sent me an email recently expressing some of these ideas which I have reflected on.

I am grateful for the following:

• the basic, being alive and in no great danger
• the physical, having good health (small hiccup here) and more worldly possessions than most (I know it is not a game),
• the emotional, having a loving wife, children, family and lots of friends and acquaintances who really care about me generally and our current situation more specifically.
• also having experienced so many fabulous things throughout my life to reminisce and think about including OS travel
• The good fortune to have experienced at least 6 or 7 different work careers each in a varied and different area of interest (farming, engineering, training, childcare, development, aviation, and others)
• the metaphysical, having the ability to think, reason, hypothesise and philosophise

 

So when you consider the huge range of things in my life that I have experienced and although not all has gone to the plan I have a huge amount to be grateful for.

Perhaps the most important thing to be grateful for at present is the current support and care provided by the wonderful staff at the Royal Melbourne Hospital.  Without their input I would not be here.

 

You would think by this stage of the proceedings I would have the routine sorted and that most things would be easily taken in my stride.  Not so!  What I have found is that each day is subtly different and the long hours without any regular sleep can easily take its toll.

Luckily for the last few days I have not blown a major temperature (although I have hovered between 37 and 38 degrees– above which point the team seem to go into orbit). Today I have suffered minor back pain as a throwback from the Lung Bronchoscopy. And I’ve been topped up with two bags of lovely fresh blood (thanks Clucs, Jodie Coles, the Ham boys and all others who have made an effort to donate recently – you are life savers!).

I’ve had a chest X Ray today (which they do in the room)

Plus the usual IV drips, additives every 4 hours or so.

The nutritionists want to  wean me off the TPN so I’m preparing to say “Goodbye” to my Uber eats liquid diet and “Hello” real food again.  We had a long and positive session with head consultant John Seymour who reassured me that at this point in time my recovery is well on track.  The Neutrophil count is slowly climbing, 100% improvement on yesterday up to 0.2 now – a good sign! Of course there are many things that still have to happen but in his words “we may get you home for a few days by the end of the month – just after your bone marrow biopsy – which is set for next Thursday.  This will be the critical decider as to how we move forward with your treatment. You would then have to come back here for more treatment and Chemo but the transplant could be within a month of that”

I have done 6 exercise sessions today, bike, treadmill and walking laps of the ward – mainly because it relieves my back ache but also as it keeps my mind off other matters and helps pass the time (plus is must almost be good for you!) I found continuing with exercise to be very beneficial for my back pain, sitting around in bed was not helping out much at all. Later in the day due to ongoing back pain I tried my first party drug- Endone- although as we go to press no out of body experiences.

So why do I need to persevere?  Simply with the lack of variety in the day and many of the same routines without any sleep the body gets very worn down.  It is extremely difficult to focus on any one matter for more than 5 minutes.  I have found that I really need to take one step at a time and stay focused on the next matter of importance.  I need to persevere just to move from this moment to the next, this matter to the next or this day to the next (although I must say 24 hrs is way beyond my time-frame at present!

And as my mother used to say to me as a child  “Geoffrey you are a persistent little devil.  You will probably go a long way in life”.

It is this perseverance that is now keeping me in life!

 

Courage can either mean” to do something that frightens one”  (think Bronchoscopy without GA) or perhaps more meaningful in my situation “strength in the face of pain or grief”.

No matter the definition I thought it might be worth reflecting on this concept today.

Today has been a fantastic day!  In fact if probably is the without doubt the best day I’ve had since entering RMH almost 3 weeks ago.   The reason for this is finally I am lifting out of the neutropenic stage and for the first time my Neutrophils count has moved off the flat line.  It registered 0.1 today which means I am slowly generating my own healthy blood cells once again.  The nutritionists have asked me to start eating again and although I am cautious I will give this a shot.

So where does courage fit in?

Just like setting up a plan to tackle the things that I can control courage is one of those things you have to take on board to see yourself through the next phase – that might be the next day (I am not looking beyond days yet) or more likely the next hour or in some cases the next 10 minutes.

There are plenty of things I have not written about – pain, badly scrambled brain thoughts and patterns, sore body from being in the one position too long that all add to pain.  For me it is a matter of assessing the situation (and the real pain – ie do I need pain killers!) and then working on the plan forward to tackle the situation (more planning!!)

For example after sitting or lying in bed for a few hours the body gets quite sore.  My response is to get up and either do a few laps around the ward to perhaps try a few Yoga movements to stretch the body.

It would be much easier to stay flopped in bed but of course that only adds to the pain and does not show any courage at all.

So for me courage is not about heroic activities but more the motivation to keep myself on the track that I need to be on for a full recovery.

For those readers out there with a strong interest in the Science behind my condition AMML (FLT 3 Var) then you will now find some additional information on the Haematology 101 page on the Blog.