Article for AML News

Luckily my face plant last week did not leave any lasting damage and my face is healing quite well.  It will take a few more weeks to return to normal looks but I am happy with progress.  The fall has been a big blow to my confidence and I must say I am much more cautious walking around the streets of Melbourne as I don’t want a repeat!

The blood tests from yesterday were encouraging although my magnesium and potassium levels had dropped considerably requiring some additional tablets to be added to the mix.  Just when I had started to reduce tablets!  I have now finished up with the steroids and the posaconazole (anti viral) so the daily intake is around just 10 tablets.

The Hb was 95, Wcc 6.0, platelets 36, Neutrophils 2.9 and Creatinine 83.  The other encouraging test result was the lymphocytes at 2.7.  This is an indication of the bone marrow working and the higher the reading the better.  It has been sitting at 1.0 so hopefully the marrow is finally kicking into gear.

A cold snap in Tassie delivered some snow to our property Milford.  Knox Heggaton who leases the farm sent this pic through and although it all looks idyllic he was a little concerned about the impact on his lambing ewes!

We also caught up with Suz Shearer and son Lachy at the Melbourne Home show. (Suz used to run Time Management training courses with me years ago in a previous life).  Suz and husband Brad now run Coolibah Turf from Echuca and supply Bunnings throughout Victoria as well as numerous other clients.  They have a huge business with 40 staff and 7 trucks running flatout.  A great success story.

Peter and Liz Dowling were down in Melbourne for a few days so despite the injuries we managed to go out for dinner to catch up no Wagga and Condo news.

On the weekend we had a lovely get together with the Gilfedders and Jeremy Twigg and partner Ness.  Nic and Mike were down in Melbourne for a family function.

Yesterday Jan and I enjoyed a lovely Yum Cha lunch with long time friend James Deighton in China Town.  James is a management consultant working with McKinseys and we first met in college way back in the 1980s.

Following that I made my way up to hospital for my planned blood transfusion which took about 3 hours.  Everything went well and then I dropped in to see friend and co-leukaemia patient James Watson who had been admitted to Ward 7B with high Temperatures the day before.  James was doing OK but now has very low neutrophils which the doctors are having trouble diagnosing.

After the transfusion I decided to walk home at around 6.00pm and was making good progress until  I expectantly tripped on a very uneven surface on the footpath.

Unfortunately my legs are so weak that I had no time to recover and hit the pavement head first – quickly.  Blood was everywhere!  I knew it wasn’t going to be good given my low platelet count so prepared for the worse.  The bleeding took ages to stem.

Luckily three lovely passers by helped me out while I rang Jan who drove up from Docklands and whisked me off to the Emergency Department for tests and to clean up the wounds.

We had forgotten how slow the hospital system is. The doctors decided to give me a CT scan to check for bleeds (everything was OK thankfully) and organise a top up of platelets.  I also received my first vaccination with a tetanus shot.  My general vaccinations were not scheduled for another month or so but due to the risk of complications the general consensus from the haematology team on duty was to go ahead with this measure.

Unfortunately they had a busy night with trauma and by the time they were able to help me out it was 3.00am before being discharged to head for home.

This little episode illustrates the ups and downs of a cancer patient that many others will hopefully never experience.  It is just one of things that I have to take in my daily stride.

Today was a good news day.  Things have started to fall into place.

After my blood tests, Ming (my clinical nurse) contacted me to say that the red blood cell count was low and I would need another blood transfusion. Luckily I was still in hospital and was able to have another blood test for what they call “Group and Hold” – basically a check on blood type to ensure they provide you with the  correct blood during transfusion.  The results take 2 hours.

Rather than wait around for results and then the 3-4 hours for the transfusion I opted to return tomorrow afternoon (after Jan and I visit the Royal Commission and have lunch with a friend in the city) for the transfusion.  The counts were not dangerously low so no one seemed too concerned about this.

The blood counts from today were:  Red Blood Cells 80, White Blood Cells 4.6 (normal  range), Platelets 27, Neutrophils 3.4 (normal range), Creatinine 93 and magnesium and potassium in the normal range.

However it was the meeting with my consultant Amit Khot that was the most encouraging.  He has advised that the bone marrow is working well for only one out of the three blood cell lineages. These lineages produce new blood cells to return my system to normal health.

1. The granulocyte (immune cell) lineage produces neutrophils (to help combat disease and infection).  This is going well.
2. The megakaryocyte lineage produces the platelets which help with blood clotting.  Although not in the normal range this seems to be reasonably stable and in time should improve. Amit is not concerned.
3. The erythropoietic lineage produces the red blood cells. This lineage is not yet stable and may take up to a year to stabilise – so patience is required. Once again Amit is not concerned about the slow progress. Since January I have had 13 blood transfusions and there will be more to come!

Amit also advised I can start cutting back on many of the drugs I am taking.  The immuno suppressant cyclosporin which I have been taking twice a day since my transplant in January can be stopped (this also means dropping off the 3 magnesium tablets a day as they are directly related to the dose of cyclosporin).  The steroid – prednisolone will be stopped in a week but the second steroid budesonide not for another month.  Both were being taken for my GVHD of the gut.  The immuno suppressant Posaconazole can be stopped in a few weeks.

At the peak I was taking 40 tablets a day – from tomorrow it will be just 9.  What a relief.  There is a way forward after all!

I have been worried about my ‘fat little steroid face’ somewhat and quizzed Amit on how long until my previous good looks return!  His answer “This will take some time”  in fact up to 2-3 months once I stop the steroids.  Luckily I am not a vain person – I’ll just have to go with the ‘overweight’ look even though I am still 6 kgs below my normal weight!

My other concern has been my eyes.  I have found trouble focusing on reading later in the day.  Amit assures me this is simply a result of muscle fatigue and that this will return to normal in due course.

What we have been up to lately in Melbourne.

Rather than stay at home we have made an effort to get out and about and do a few things like:

Travel up to Lake Mountain – a small  cross country ski resort near Marysville.  This was a beautiful day out.

Visit the Banking Royal Commission, which has been quite interesting especially when  you work out how Mr Hodge trys to set his trap for the NAB executives.

Visitors include the Tucker family from Wagga.  We popped Dougall in as he is good friends with Henry and Ruby Tucker.

Drinks with Duncan McFarlane (our old uni friend who now lives in Cambridge).  Sorry Nick but you chose to be at work rather than socialise with your wife!  Duncan’s dad Brian on the right.

A quick trip down to Geelong to see the final year production of Beauty and the Beast.

A nice lunch with with Eric and Dagmara Saacks.  Eric flys a plane similar  to mine  and we have been aviation buddies for a few years now.  He was in Melbourne for an orthodontics conference (and a short holiday). We had a great catch up.

The results from this week’s blood tests show that the counts are stable which is reassuring.

The results were:

Hb – 88

White Cells – 4.9

Platelets – 30 (following on from extra platelets last week)

Neutrophils – 3.3

Creatinine – 93

And my liver function is deemed to be good.

It is a funny thing but when you are a leukaemia patient the process of providing blood and waiting for the results becomes a big feature of your week.  You hope that the results are positive and nothing has moved too quickly but of course I have little or no control  over this process.

Most weeks I tend to bump into friends James and Victoria Watson at the hospital as James is also on weekly blood tests and our times seem to coincide.  James is a few months ahead of me with his treatment and his blood results are also pretty stable at present.  We generally have a good catch up on how each of us feel and the issues that we each deal with.  He is on steroids for GVHD and a cocktail of other tablets but seems to be taking this in his stride.

I am now weaning down on my steroid tablets taking just one 5mg tablet every second day.  Hopefully next week after a visit to my consultant this will be adjusted down again, although I have been informed that I may need to remain on steroids for quite some  time.

As I mentioned last week patience is the name of the game and for me it is a matter of realising that my recovery could take up to two years post transplant.  Although Jan and I are trying to integrate some ‘normal’ daily activities into our routine life is certainly not what it used to be!

Both of us have been used to keeping the diary full and ourselves busy during each day and week and now the focus is on my recovery with lots of rest and downtime.  Jan keeps on reminding me we are ‘averaging down’ the workload!

Fatigue is a significant feature of my day. I have been continuing with my rehab sessions (gym) at the Epworth Hospital which although only lasting an hour tend to leave me tired and sometimes exhausted.

I generally have a rest of up to two hours most afternoons and then read or listen to the radio for the rest of the afternoon to recharge.  Although at times frustrating I have found this time very important for recovery.

We had a great visit from my cousin Andrew Hamilton and his wife Fiona last week.  They were down in Melbourne for a Trade Fair – where Fee is selling plastic wine glasses as part of her new business.  They had also been celebrating Fee’s 50th birthday with a special visit to Daylesford for a few days.

We were lucky enough to see the Brandenburg orchestra on Saturday night.  And on Sunday we made a special trip out to the You Yangs for a lovely hike.  The weather was ideal  and we enjoyed a small excursion out of town.

On Monday we spent some time sitting in on the Banking Royal Commission.  It certainly was interesting to sit in the court room and hear how the QCs take on the banking executives!

More next week!

This week involved a little surprise!  I accidentally chopped a chunk out of the end of my index figure and the bleeding would not stop!  A pressure bandage helped but after two days my finger was still bleeding.  And to make matters worse during a gym session at the Epworth rehab program I managed to scrape my shin and start another bleed.  With a low platelet count my blood would not clot so the bleeding contimued.

So during the weekly blood tests at Peter Mac my clinical nurse, Ming suggested that a top up of platelets was required to address the issue.  This process is much quicker than a blood transfusion but still takes a few hours.  This was not a problem as I had allowed the day for blood tests and other top ups if needed.  The extra platelets had an immediate impact on the bleeding.

My blood results from yesterday were encouraging:

Haemoglobin – 88

Wcc 4.3

Platelets – 27 (soon to be 35 plus after the top up)

Neutrophils – 2.9

Creatinine – 86

Ming confirmed that I still need to be patient while my bone marrow rebuilds.  He said this will take some time which could be months but it will slowly recover,  The key indicator will be a gradual increase in the platelet count.

Apart from the bleeding issues I am feeling well and although still suffering from fatigue when keeping a little too busy things are going well.

Catch ups last week included:

Duncan McFarlane (an old uni friend who now lectures in Cambridge but is in Melbourne establishing a new Engineering course for Melb. Uni).

We made a two day trip to Newcastle to meet up with business colleagues on an aged care development project we are involved with.

Michael and Kate McConachy our business partners from  Kununurra were in Melbourne for a few days.  We made time to go over our businesses and plan a few things for next year.  Mike and Kate do a fantastic job running  a business that now employs 140 people.

Ali Reid from  Wagga dropped in for  great catch up (including dropping off a jigsaw puzzle from here sister Claire.

Claire arrived in Melbourne after an epic drive across the Nullabor with some friends.  Claire now works from Melbourne for Shell.

We caught up with Jan’s uncle David and friend Rosa for dinner and saw James Morrision and Kate Ceberano in concert – a truely lovely experience.  James’ two sons play with him making it even more special.

Last week I was concerned the blood counts had dropped dramatically and the doctors were in two minds as to how to go forward – one option was to increase the drugs and the other was to lower the dosage.

After looking at the evidence and the options the decision was made to keep everything as it was – no changes were made to dosage rates at all!

So what has this meant for this week?

I received two units of blood last Wednesday which has bumped my Haemoglobin levels up to 93 with all other results being very similar. The doctors tell me that things are still on track and I have no need to worry – it is just taking some time for the bone marrow to kick into action.  I need to be patient.

The Leukaemia Foundation have a range of services they offer patients and one of these is a ‘blood buddy’ service where they match you up with a survivor for a phone conversation.

I was matched with a person of similar age, George, who has now survived 5 years post his Bone Marrow Transplant.  We spoke for an hour on the phone about his experience and the issues he has faced along the way.  Although everyone is different in how they respond to treatment there were plenty of similarities with his treatment and progress along the way.

What became evident during our conversation was the need for patience and to realise that the recovery process is likely to take years rather than months.  George was back to work 6 weeks post his transplant but has since retired.  He found that fatigue and other issues prevented him wanting to continue with work.

He did say that his fitness is now back to being better than pre-leukaemia and he is pretty happy with his current lifestyle.  This gives me great hope!

Due to feeling a little better each day we have now started to plan some business trips and other longer trips out of Melbourne.

Last week we flew over to Whyalla in South Australia to catch up with our caravan park managers, Peter and Deb Dawson.  They have been doing a fabulous job with our park and it is really hitting its straps at present being booked out most nights at present.

We met up with Nick and Sue Clarke again to see a great play last week, Oscar Wilde’s Ideal Husband.  We had a great night together.

And on Thursday after my re-habitation session at the Epworth we headed off on our biggest trip this year – a four day trip up the NSW coast to catch up with my brother Tony and Katy who have recently purchased a fabulous ‘retirement’ home at Rosedale on the NSW south coast near Moruya.  Their house is on top of the ridge line overlooking the sea (and as it happens the migrating whales!) through a stand of spotted gums. Their daughter Amy and boyfriend Phim arrived for Friday night.

We managed a fantastic drive across the mountains from Bega to Bairnsdale via Bombala and McKillops Bridge on Sunday and stayed with Jan’s brother Andrew on Sunday night before returning to Melbourne.

Jan even managed to get on a horse for a nice ride!

This was a big trip for both of us but one we managed and thoroughly enjoyed.  It has given me confidence to venture out from Melbourne knowing that even with my current health status it is possible to travel.

Haematology is an interesting medical area.  One minute my blood counts are doing really well and the next things seem to take a turn for the worse.

Today’s blood counts were all down on last week.

Hb is now 80 – I will require a blood transfusion this week.

My White Cells WCC are down to 2.4 which is just outside the ‘normal’ range but not low enough to be of concern.

And Platelets have dropped to 24 which is quite low and these may need a top up as well.

Neutrophils have dropped to 1.1 which is now outside the normal range and something to keep an eye on.

The question is what has caused this drop in blood counts in just one week?

And this is where the haematology gets fascinating. It may be because I am weaning off the steroids resulting in a drop in Stem cell production (Steroids can boost the stem cell production of red blood cells and platelets). Or it could be that the cyclosporin levels are too low or too high.  These things seem to be at opposite ends of the spectrum!!

On the one hand they tell me that it might be because I have another different presentation of Graft vs Host Disease and my immune cells may be attacking my red blood cells but on the other hand it might be that the immunosuppressant drug Cyclosporin is causing breakdown of the red blood cells. They are going to look at my blood under the microscope to see if there is any signs of haemolysis (red blood cell destruction) which will allow them to make a decision regarding the ongoing doses of Cyclosporin, it will either be increased or deceased depending on what is causing the drop in my red blood cell (Hb level) and platelet count.

There is a possibility that the graft which has taken is not functioning correctly in terms of the bone marrow production but more tests will have to be conducted to confirm this.

This is a puzzle for the haematology team and one I am hoping they can work through over the next few days.

Either way I expect to find out more on Wednesday when I go back in for a blood transfusion. I haven’t needed one of these for a month or more so it is a little step backwards but hopefully not too much of a set back.

On the weekend we spent some time with Jan’s brother and family taking  in a kids show at the Arts Centre – Hunting the Snark.

We also managed to see the Alice in Wonderland exhibition at ACMI which the kids loved.

We (Jan and I) also saw a film called “Terror Nullius” at ACMI- the jury is still out on this one.

And on Sunday we caught up with Nick Middendorp and his lovely wife Jo for lunch at the Royal Brighton Yacht Club. Nick is a keen sailor but is smart enough to crew on a mate’s boat rather than own one!  Nick is the man behind “Middy’s” Electrical and they have just opened up a new shop in Wagga next to Signarama.  They have a fantastic business model offering all sorts of sustainable solutions for power usage in businesses and households.  They now have outlets all over Australia with about 400 plus staff – a big business indeed.

Jan was keen to travel down to Tassie for a meeting with Tassie Irrigation, in relation to the dam and water supply on our farm.

Having just received some good results from the Doctor and with everything fairly stable I decided to join her.  What an adventure!

We flew down commercially with Virgin on Tuesday night, stayed at the brand new (and very sharp) Peppers Silo hotel in Launny.

While Jan was at her meeting I met up with Miles Kendell (son of aviation pioneer Don Kendell) to check out my hangar at the airport (Miles keeps his Piper Cub there).  Miles invited me to join him  for a local flight which I couldn’t resist.

It was a beautiful day and we headed over to Ben Lomond and then our farm for a quick aerial.  Miles had to fly to Melbourne as he is a Captain with China Southern and was due to fly out to China that night.

We drove through to Campbell Town to quickly catch up with my GP, Myrle Grey to let her know how my recovery was coming along.  In the afternoon we headed down to the farm to check out how things looked.  Everything was fantastic – the house looked like we’d only left a few weeks ago (thanks to our fantastic cleaner Cherry) and the garden was in top order thanks to Scotty, our gardener who helps out every few weeks

As I write this blog it is obvious that I am slowly getting better as my mind now turns to activities and things to do to keep me sane!

Can you imagine a life changing event that not only renders you in hospital for many weeks but leaves you with a loss of confidence and energy when you are discharged?

For me the biggest challenge has been to keep my mind and body active during the recovery process.

It has taken me many weeks (months in fact) to get a feeling of some normal level of energy and during this time I have had to make many adjustments to my ‘normal lifestyle’.  The most noticeable is that I am still very weak and lack any sort of muscle mass.  Apparently it takes 6 weeks to replace what you can lose in just two days of lying in bed.

I am now involved in a Rehab program at the Epworth hospital where the Sports Physiologist is putting me through my paces, measuring everything and  letting me know not only how unfit I am but also how bad my posture has become!  It is a long way back but my aim  is have some sort of fitness and muscle mass by the end of the year!

In the meantime the question for me is how to keep sane on a day to day basis.  There are only so many jigsaw puzzles one can do and of course reading is an option – the local library is getting regular visits.  I have started to make a pom pom rug which is a craft activity that tends to take up plenty of time.

And in what is perhaps a good sign I have now started to spend some time thinking about our various businesses that we are involved in.  Jan has been taking the front running on this since my diagnosis and luckily I have not had to think much about this.

We are also venturing out from Melbourne on small day and overnight excursions.  I have now had just two nights sleeping out of Melbourne this year so far.

Blood counts

My blood counts for this week are again stable which is good news.  Hb 87, Wcc 4.1, Platelets 32, Neutrophils 2.5 and Creatinine 85.

I had another Bone Marrow Biopsy last week and results show I am all clear of Leukaemia which is again a big relief.

And a Chimerism test also showed that for both my blood and immune system I have a 100% take up of my brother’s cells.  Another good result.

I am happy with progress.

Family and Friends

We had a lovely dinner with Susan and Stuart Nicolson last Thursday.  Susan sits on the GGS board with Jan and they have become good friends over the years. Stuart works in the Retirement Development industry and has some interesting stories to tell.

Lachy and Hanna headed off to Bali to start their new adventure on Saturday, having sold up their ‘life’ in Melbourne over the past few weeks.

And Claire was back in Melbourne for the weekend from Brisbane where she is training for her new role with Shell as a Gas Analyst!

Tassie for a Day

In light of the good blood tests and my feeling relatively well we have arranged a quick visit to Tassie this week for Jan to attend an Irrigation meeting and for us to see our farm and house for the first time in 10 months.  Scary but also a step closer to relocating back home.

This week’s visit to hospital for blood tests revealed that the blood counts are still tracking along pretty well.

Hb 89, Wcc 4.5, Platelets 34 (have dropped a little) and Neutrophils 3.0.  As expected Creatinine has crept up to 106, largely due to the side effect of the higher dose of Valaciclovir.  And the CMV result from last week was down a little from the previous at 487.

All in all the doctors are still happy with progress and are keeping me on a weekly schedule of monitoring.

I must admit I wake up every day and remind myself how grateful I am that I am not in hospital, I am feeling pretty good and my overall progress back to health seems to be well on track.  What more could I ask for!

Claire flew back into town on Friday night and travelled up to Wagga for a party with her friend Toby.  She has now finished her old job in Perth and is off to Brisbane for some training in the new role with Shell before returning to work from Melbourne early in August.  She will be a gas analyst for Shell.

Lance Wolfe from our Aviair Team in Karratha was in town for training

As was Tim and Chief Pilot Max Bladon

We are now starting to plan a few trips out of town to visit friends and do things other than walks around Docklands.  This has been a little confronting for me as we had our second night sleeping out of Melbourne on the weekend – a long way from the  hospital but all went well.

We stayed over with Richard and Zara Brookes at the weekend on the Bellarine Peninsula, near Port Arlington.  We also had a great dinner party (late one for me at midnight) with George and Serena Chirnside and Lyndsay and David Sharp – who run a group of vineyards, restaurants and a golf course on the Peninsula.

I’ve said this before but the simple act of catching up with some friends for a coffee or lunch has been stimulating and very rewarding for us both.  There is nothing like staying connected with old friends and family and the support this has given me has certainly helped with my recovery.

Knox and Cate Heggaton dropped in Sunday afternoon on their way to Europe for a well earned holiday.  We managed to catch up on news of our farm in Tassie  – all is going well.

A bunch of Wagga people including David Foster, Mark  Hillis, Peter Clucas, David Hodge, Col  Duff, John Smith and David and Cathy Pyke made the trip down to Melbourne for the Swans- Tigers match on Thursday night.  What a great night out at Etihad Stadium just next door!  Note Clucs dressed me up in Swans gear and is proudly wearing the beanie I knitted him.

Lachy heads out of Melbourne to Bali with his girl friend Hanna next week to work from Bali!  Hanna has a job transfer and Lachy has decided to go along – indefinitely.  He has convinced his boss that he can work flexibly from Bali with a return to Oz every few months for client meetings and so forth.  He has sold everything up and is about to start a new chapter in his life!