Month: October 2018

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

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

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

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

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

Exciting times

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

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

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

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

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

Movie Review

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

Tassie here we come!

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

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

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

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

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

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

Lots of things to do 

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

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

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

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

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

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

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

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

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

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

In the big game of Snakes and Ladders I have just hit another slippery customer that has dropped me a few lines – this time expressed as decreased liver function.  Never a dull moment for a leukaemia patient.  Up one week and down the next.

The good news is my blood counts are still very robust.  Hbs 88, Wcc 7.2, Platelets 163, Neutrophils – 4.1, Creatinine 93, Mg 0.66 and K 3.5.  The doctors have no concerns there.

But the news on the liver function is troubling.  The team cannot say what is causing this drop in function (about 4 times worse than last week), but believe it could either be a virus, some structural damage from my earlier GVHD or perhaps a recurrence of GVHD.

I had just dropped my steroids from 25mg to 12.5mg for the gut GVHD and now I find myself back up to 50mg to treat the liver, plus another drug Ursofalk (ursodeoxycholic acid).  This will take the daily tablets to around 25 – just when I was down to just 6 daily a week or so ago!

I will have an ultrasound of the liver on Friday to try to determine exactly what the cause is.  Hopefully I will know more by next week.

Despite this I have been feeling quite well over the last few days and have been able to increase my exercise regime a little in an effort to regain some sorely missed muscle mass.

Last Friday we both attended a Cancer Conference at Peter Mac.  It was generic to all cancers and covered things such as well being, exercise, diet etc etc.  There was little new information for us but it certainly reinforced the importance of the things I am concentrating on at the moment – good diet, regular exercise, and mental well being.

We had a little surprise on the weekend with Jan being admitted to hospital for a day with an irregular heartbeat.  In fact she was diagnosed as being in AF (Atrial Fibrillation) by her GP on Saturday morning and her cardiologist made arrangements for a bed at the Epworth, Freemasons hospital in East Melbourne.

The boot was suddenly on the other foot with me turning into carer and Jan the patient!

Luckily after some minor medication the heart rate returned to normal and Jan was discharged on Sunday morning.  There will be more discussions with the cardiologist next week and in the meantime the doctors say it is just ‘one of those things’ and there is nothing of great concern.

Of course everyone is putting this down to the stress of looking after a sick husband, but in reality it is just one of those things.  Her Dad has a pacemaker and has been through AF in the past, as has my father.  Perhaps it was the newfound uptake of coffee, but that has now been dropped just in case!

Movie Review

Claire joined us on Friday to catch “First Man” at the keno theatre.  This movie covers Neil Armstrong’s life in the the years leading up to and including the landing on the moon.  There were many scenes where you felt like you were joining Neil in the rocket with all the vibration and noise (Jan is convinced it caused the AF!).  We get a great insight into Neil’s family life and the stress and strain of the life of an astronaut.  I’d recommend it to anyone happy with a non-violent, feel good movie.  The question of course remains – why haven’t they been back to the moon after all these years?

Jan was away with GGS business on Tuesday so Dougal stepped in as my support person for the day.  We walked up to the hospital and back – about 40 mins each way.  We had our regular catch up with fellow leukaemia patient, James (and Victoria) Watson at the hospital this week during the blood giving ceremony – they almost feel like family!  James is progressing well and was due to have his PICC line removed today.

Unfortunately the GVHD (Graft vs Host Disease) of my gut has returned again.  This started a week ago with two or three bouts of diarrhoea.  I had hoped it might resolve itself but after a week of waiting things were not improving so the medical team decided to put me back on Prednisolone (steroids) to fight the GVHD.  The ‘preds’ kill off the T Cells in the blood stream which are attacking the soft lining of my gut, causing irritation and  ‘malfunction’ of the gut system.

They have placed me on a low dose of steroids (25mg daily) and will start the weaning in 10 days.  This is now considered to be chronic GVHD which might last a life time and will probably need to be treated with a low dose of steroids as it flares up each time.

The low dose of steroids which will be weaned relatively quickly should mean that the development of excessive fluid and fat (puffiness of the face and tummy) will be kept to a minimum.  I am happy about this as I had started to get quite concerned about the excessive fat around my face, chest and stomach (now I know what a beer gut feels like and it is not very comfortable!).

The blood tests from today were very encouraging:

Hbs – 89, Wcc – 7.3, Neutrophils – 3.2, Platelets – 166, Creatinine – 86 and Mg & K in the normal range.

Amit is confident that two of the three ‘lineages’ of blood cell generation by the Bone Marrow, are working well now and its just a matter of time until the production of Red Blood Cells  kicks into gear.  He won’t be drawn on how long this might take – perhaps up to another 12 months.

Unfortunately the Steroids have an impact in my ability to control the CMV so I am back on 12 anti-viral tablets a day – just when I was getting down to just a few tablets a day, I am now back on about 20!

This is the game of snakes and ladders that I find myself playing.  Just when you get towards the top of the chart you find yourself slipping down the big long snake to the bottom.  Amit suggests that in fact it is just one of the smaller snakes and things will continue to improve – I hope he is right.

Over the last few days I have been feeling much better and my headaches have now moved on.  The lumbar puncture from last week was all clear with no sign of leukaemia or viruses in my spinal fluid  – another relief.

Jan’s Birthday

We enjoyed a great day last Thursday and much to our surprise (and tears of joy), we were surprised by the early return of Dougall from  his travels in Europe and the return of Lachy from  Bali for a few days.  Claire had organised this behind the scenes and managed to keep it as a complete surprise.  It was great to have the family back together again in Melbourne.  The children had shouted us and Jan’s parents a night at the Ballet where we enjoyed the performance of Mid Summer Night’s Dream.

On the weekend we ventured down to Geelong to see the Archibald Prize paintings as part of their regional tour.  It was certainly worth the drive.  Following that we had a lovely lunch with Jan’s friend and colleague on the GGS Council, Susan Nicholson and husband Stuart.  They have a magical small farm just north of Anakie, near the You Yangs. Stuart currently manages the Aged Care property portfolio for the Folkestone.

On Sunday we drove out to Mount Macedon to see the open Garden at the historic Bolebek, owned by friends of ours, Hugh and Bridget Robertson.  They open up their magnificent gardens yearly to help raise funds for the local garden society.  It certainly was a fabulous day out, followed by a nice family picnic in the Carlton Gardens.

Yesterday we were lucky enough to complete a behind the scenes tour of the Alma Doepel, an old timber square rigged boat that is being restored in Docklands.  The ship was built in the early 1900s and a devoted band of volunteers plus a small group of shipwrights are painstakingly restoring this vessel to preserve some of our maritime history.  The tour was absolutely fascinating and well worth being put on your list of things to do in Melbourne. (I have been asked for key recommendations for Melbourne visits which I will compile for a future blog).

For the time being I am attending Pilates classes twice weekly (using the famous reformer!) and another gym session once weekly plus lots of walking – all in an effort to return a little bit of muscle mass!

 

 

As I’d mentioned previously I have been having constant headaches early each morning for over two weeks.  The doctors organised a brain scan on Wednesday which fortunately showed no signs of tumours or other abnormalities.  Interestingly I initially tried to book the scan through the public system at Peter McCallum hospital but was told there would be a 3 week wait.  So we headed across to the private radiology service at Royal Melbourne and found that I was able to get in immediately – no time like the present! (as John Preddy said to me “private medical services are always motivated by a credit card!”).

Given the clear scan the medical team have now ordered a lumbar puncture test as the next level of investigation.  This will happen later this week.

My blood tests this week were once again excellent, giving me some hope that the Bone Marrow has finally kicked into gear.

White Blood Cells – 6.6.  Platelets up to 148 (finally  in the normal range), Neutrophils 2.5 (also in the normal range) and both magnesium  and potassium in the normal range.

My Red Blood Cells had once again dropped below 80 meaning a transfusion is required.  Usually the medical team would ring to advise me of this but this time I advised them that a transfusion was required! (they must have been busy on Tuesday). This will be transfusion no 17 for the year.

Other things

Of course with Grand Final Weekend Melbourne went mad with excitement, we chose to go for a walk and view the madness on Saturday morning.  Melbourne was certainly alive and the atmosphere was electric.

My brother, Tony, was invited by  Nufarm to join their luncheon at the MCG to watch the game. On Sunday we took Tony for a “picnic at hanging rock” near Mt Macedon. (Luckily we all survived the outing to tell the story!).

Claire and Toby dropped in to cook us dinner on Sunday night and to fill us in on their week walking and camping in the Grampians.

We enjoyed the company of Katrina Weir on Monday night.  “Millsy” was down for a few days of work at the Medibank Private office in Docklands which is only 5 minutes walk from here.  I am a (neglectful) godfather to her daughter Harriet, who is now studying at Sydney University.  I generally miss most birthdays and special events but of course keep up to date via Katrina on her progress through life!

Jan’s parents, Helen and Allen, visited again on Tuesday night, the conversation is always interesting when they come to stay.

We visited the Johnston Collection House museum in East Melbourne on Wednesday morning.  This is a fantastic collection of art and historical artefacts left to the people of Victoria by wealthy businessman William Johnston in the 1980s.  You have to book  for tours but this is certainly a great place to visit.  This replica of Marie Antoinette is made of recycled plastic bags!

We spent a great afternoon out at the National Equestrian Centre,  Werribee on Wednesday catching up with Rachel Scarlett and her daughter Imogen who was competing for NSW Schools in the National competition.  Rachel worked with us as an area manager in our NurtureOne childcare business and still works in childcare and has just taken a new job with Gowrie NSW.

Whilst there we also ran into Claire’s friend Sophie Sutherland who works as the marketing  manager for Marcus Oldham college.  Soph was at the event manning a stand to espouse the benefits of studying at Marcus.

By way of an update for family and friends Claire has just spent the weekend up at Wagga with boyfriend Toby, attending the Wagga Picnic Races.

And Dougal met up with Cousin Georgie Sheridan at OktoberFest in Germany.  He will be back in Australia mid October – hopefully to become a little more grounded with life!

STOP PRESS

After 15 years Jan has decided that she likes coffee again (thanks to the Piccolos served up by the Clarkes during our weekend at Point Lonsdale).  Miracles never cease to amaze!  And as a special celebration for her birthday on Thursday (4th) Claire is taking us to the ballet.  Should be a good night.