Article for AML News

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.

Today I had my childhood immunisations to boost my immune system.  This involved an initial consult with a doctor (as it turns out David Ritchie who is one of the gurus of Peter Mac) and five injections delivered by a nurse.  The injections covered included Polio, Diptheria, Tetanus, Pertussis, Pneumococcus and Meningococcus.

I will require boosters for these in two months time.  I also need to get Hep B injections by my GP as these are not covered by the hospital funding at present.

The best part of the process was getting the lollies for ‘being a good boy’ just like when  we were vaccinated as a child.

We took advantage of the time with David Ritchie to ask questions on the path forward.

I was particularly interested in the survival statistic for patients with AML which I have read is only about 60%.  David reassured me that this is the statistic prior to a Bone  Marrow Transplant but each person increases this stat with the hurdles they survive such a successful transplant, GVHD and other things.  It improves with time so at the two year mark post transplant the survival rate is closer to 90%.  And once passed the 3 year mark patients with AML are considered to be cured from cancer.  Here’s hoping!

This information was very encouraging given I am at the 9 month mark post transplant and things appear to be going well.

He also reiterated that the haemoglobin might take a year or more to return to normal levels.  In  the meantime I will continue to require blood transfusions every month or so.

I have been suffering from headaches every morning for the past week which generally last until lunchtime despite taking a few panadols.  David suggested I increase my intake of fluids (minimum of 2 litres per day) and also to increase my magnesium from one tablet a day to 2 or 3 to see if this has an effect.

In general over the last few weeks I have been feeling lousy each morning but much better in the afternoon.  David said this will vary from patient to patient and might take 18 months or more before I feel at my best.  He indicated this is completely independent to the state of my blood tests.

I was due for blood tests on Monday of this week but chose to have these taken last Friday as we were hoping to be out of town for the weekend and Monday.

The tests were positive with the platelets increasing from 42 to 87, which is very exciting.  Neutrophils were 1.7, White blood cells 5.9 and Red Blood Cells at 86.  I will probably find they are below the magic 80 level at my next test in 10 days time requiring a blood transfusion.

I have now stopped the blood thinning injection Clexane for my blood clot where the PICC line was previously.  That was a daily injection that I am happy to do without!

Social Stuff

We had a brief lunch with John Dunn who was in Melbourne for an MYOB conference last week.  Dunny is quite a comedian and often gets referred to as our very own Russell Coight.

 

 

 

We managed to dress up one night for a Geelong Grammar dinner in Melbourne to recognise the outstanding contribution to society of a past student.  The recipient of the GGS Medal was Glen Liddel-Mola who has spent his career in Papua New Guinea working on improving child and maternal health and birth control.

On Saturday we drove up to Dookie and stayed with friends Alice and Richard Tallis.  The Tallis’s operate a vineyard and cellar door on their farm. It was a busy day for them on Sunday with more than 100 people booked for lunch.

We then drove up to Wagga via Devenish to check out the silo art and Corowa (with time to stop in at the Chocolate and Whiskey factory) and stayed the night with the Preddys.  Steve and Jenni Butt came over for dinner and it appears that we haven’t seen Jenni for over a year – but it certainly didn’t feel that long.

I attended a Proway board meeting on  the Monday and Jan caught up with Julia Ham (almost a politician in Wagga) and Fe Tucker.  We also had a quick cuppa with my parents before heading back to Melbourne.

Lachy and his girlfriend Hanna flew in from  Bali on Monday night, in time  for a memorial service for Peter Wetherall, the dad of Lachy’s good mate Harry Wetherall.  Peter was just 62 when he died of lung cancer.

Film Reviews

Last week we saw ‘Ladies in Black’.  This is an excellent movie starring Julia Ormond as shop assistant Magda and Angourie Rice.  The film is based around the team of the Goodes department store in Sydney in the late 1950s and follows the life of Lisa (Rice) working as a temp over her holidays as she eagerly awaits her Leaving Certificate results for entry into university (which is not encouraged by her father, played by Shane Jacobson).

Another character (Fay played by Rachael Taylor) is also a focus as she looks for love beyond the yobbo Australian males of the time.  She is enchanted by the European men and eventually finds the perfect companion.

This movie is a great ‘feel good’ movie and will bring a tear to most eyes with a few laughs as well.  8/10

Massacre at Warrigal Creek

This documentary made by students at Swinbourne University covers the horrible massacre of more than 100 aboriginal people in the 1840s in East Gippsland, Victoria.  The film makers interview a number of historians to gather their views as to what happened all those years ago.  The documentary is professionally made and leaves you with no doubt that this was a very dark chapter of our past.  The film will be shown at limited venues in Victoria at this stage.

 

 

 

This week is the first week that I don’t have to get a blood test.  The doctors have said I only need to consider coming in if I feel unwell (which I did today).  Today was one of those ‘flat’ days where I woke with a headache that lasted until well after lunch (despite taking a few Panadols) and I lacked energy most of the day.  This may relate to low haemoglobin. I will see how the next few days are before deciding to take an ‘early’ blood test.  It would be a good test to wait the full two weeks!

Last week I had a nerve conduction test performed to try and quantify my peripheral neuropathy.  This involved putting some electrical transmitters on my legs to measure electrical current passing through the nerves.  At times it felt like I’d touched an electric fence as the shocks were quite noticeable!

The good news was most of the nerves  are working quite well with just one nerve being damaged.  This nerve controls the motion of a muscle in my left leg and as a result I tend to have trouble walking smoothly. I have ‘foot drop’ where my left foot tends to slap down with each step rather than rolling onto the ground.  I am told that it should rectify itself in time and exercises will help.  With that in mind I am now booked into regular sessions with a physiotherapist with a plan of exercises to help out.  I am also booked for some Pilates classes – which will be a first for me.

Social activities

 

 

We unexpectedly bumped into a school  mate of Dougall’s Harry Wynn-Pope who is working as a project manager with a construction company  at RMH.  Harry was on for a good chat.  He certainly has some height about him!

On Wednesday we had dinner with Mike and Fi Rouch, Claire and Toby and Claire’s new flatmate Lilly before going to see “The Merger” a new movie about an AFL club which is filmed in and around Wagga, it was a movie with a good message and it was fun to spot familiar faces and places.

Thursday Jan and I had a joint visit with the psychologist at the Epworth as part of he rehab programme I am undertaking there. We are unsure of any benefits at this stage!!

Jan was off to the dentist on Friday (with her uni mate Ray Montag) and we enjoyed lunch with Ray and another uni friend Louise Rehe (Bailey).  A topic of conversation was Ray’s daughter Jemima who won a gold medal  in the 20Km Walk at the recent Commonwealth Games.  She now travels the  world to compete in this sport.

 

We enjoyed a fantastic weekend at Point Lonsdale (at the western head of Port Phillip Bay) with good friends Nick and Sue Clark.  Nick is an avid cross word player and couldn’t resist testing us all on the weekend crosswords.  As it turned out Jan was able to offer lots of help and Sue and I quickly became passive observers.

The tide certainly turned when the boys challenged the girls at scrabble.  The outcome was not in the boys’ favour!

We managed a couple of lovely walks along the coastline, a few wines and even a gin and tonic!  All in all it was a great couple of days – thankyou to the Clarks.

Given that I am now moving to fortnightly blood tests I will most likely stretch the blog postings to fortnightly as well unless there is some medical information to pass on in the meantime.

It is amazing what a difference a week makes in the life of a cancer patient.  Towards the end of last week I developed some pain in my arm near the PICC line entry point (this central line travels from a vein in my left arm directly to my heart for blood tests/transfusions etc).  The pain moved to my armpit over the weekend.  I emailed my clinical nurse, Ming, on Friday and he suggested to monitor it over the weekend.  A call to Ward 7B on Saturday night confirmed that it might actually be a blood clot but monitoring it was one option or I could go into Emergency at RMH (10.00pm on Sat night).  I chose to monitor it rather than spend all night in Emergency!

On Monday after contacting Ming again he requested I return to hospital for an ultra-sound scan and indicated the PICC line had to be removed.  He said they usually only last up to 8 months with mine being inserted back in January – well past its use-by date.  The ultra-sound showed a partial blockage of the vein with a large blood clot.

The PICC line removal is a tricky procedure.  If my platelets are below 20 then I would require a top up of platelets to prevent excessive bleeding.  And if they are above 30 then blood thinning medication would be required to assist with the removal of the clot.  The removal of the line could also dislodge the clot sending it into my lungs!

Given that my platelets were just 21 last week I was convinced that I’d be in the right zone of above 20 but below 30.  A blood test was required to confirm.

And when the result came back it showed my platelets had climbed to 42!  How does this happen?  In one week the count had doubled – incredible.  This was a double edged sword as a high platelet count was good news but it now meant I needed to go on a course of blood thinners for 2 weeks – which are injections not tablets!

Luckily the removal happened without any complications.

Meeting with Amit Khot

On Tuesday we had our monthly consult with Amit Khot – the lead BMT consultant working on my disease.  He was pleased with my blood results (Hbs 91, Wcc 5.0, neutrophils 1.9) and has now moved me from weekly blood tests to fortnightly blood tests – another huge (but somewhat scary) milestone.

This is because as bone marrow transplant patients we tend to live from blood test to blood test.  However Amit has advised me I now need to go more on how I feel rather than what the blood tests show.

He has indicated I will now be ready for my childhood immunisations (all these are lost with the stem cell transplant). This will happen over the next week or so.

And he also reduced some of the tablets – meaning I am now down to just 6 tablets a day!  This is absolute bliss!

He ordered a study of my peripheral neuropathy to assess the nerve damage of my feet.  I still experience numbness of my feet on a daily basis.

So all in all things are moving along well and this week is another great step in the right direction towards regaining my health.

Extra activities

On Tuesday we celebrated  Oscar Sheridan’s, our nephew, 21st birthday party at a quiet family/friends dinner in South Melbourne.  Oscar is the son of Jan’s brother (Michael) and my sister (Fiona) so we are super related and he is a fine young man!

On the weekend we attended the Leukaemia Foundation Conference in Melbourne.  This was an interesting conference which covered the latest advances with treatments. We also had the chance to meet  up with other patients recovering from Leukaemia and swap notes.  This is generally re-assuring but you often learn that people deal  with complications long after their transplants.  This is a timely reminder that I will probably need to deal with issues for a number of years.

On Sunday morning we tried out the Melbourne train service and headed over to Claire’s new place in South Yarra for morning tea and to meet her new Kiwi flatmate Lilly.

That afternoon we spent some time with Simon and Cathy Kemp and enjoyed a lovely afternoon tea which morphed into sherry and nibbles as the afternoon wore on!  The Kemps have a fantastic apartment in Footscray overlooking the Maribrynong river if we look hard we can see them from our balcony in Docklands.

 

And on Tuesday we had a surprise visit from Nicole Gilfedder who was in Melbourne for the Fine Foods Exhibition.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My blood tests this week were interesting. All counts had dropped somewhat and I got a call from the hospital requesting I come back in for a blood transfusion.  This was quite surprising as I had been planning a transfusion every 4 or 5 weeks but it has only been 3 weeks since my last transfusion.  The Doctors did not have an answer as to why the counts had dropped so quickly – something that is not uncommon.  Some of the reactions to cancer treatment cannot be easily explained. I have suspected that I have carried a cold for the past two weeks and if this is the case it will  probably have had an impact on the blood counts.

My blood counts were:

Red Blood Cells 76, White blood cells 4.0, Platelets 21, Neutrophils 1.7, Creatinine 81 and Magnesium 0.67, Potassium 3.8.

I chose to return  to the hospital on Tuesday afternoon to get a ‘Group and Hold’ done for my blood type so that I wouldn’t have to wait an extra 2 hours on Wednesday when I returned for the transfusion.

I must admit deep down I am a little disappointed that my blood cells are not producing well enough to keep the counts higher.  I know it is something that I don’t have control  over but never the less it is a critical part of my recovery that does not appear to be going to (my) plan.  The doctors do not appear to be concerned and keep saying I have to be patient – time is required for the bone marrow to kick into gear.

A week in Wagga

Last week we spent the longest period out of Melbourne since arriving a year ago.  The idea was to celebrate the one year milestone with friends. I was quite nervous about being so far away from the hospital for a week but everything turned out well.

We kicked this off with a lunch with Mark and Chrissy Hills, Darren and Kath Wallace and Peter Clucas.  Unfortunately Sharon Clucas had to stay at their ski shop, but we did drop in and catch up with her after lunch.

On Wednesday night it was time to catch up with our old tennis group the Preddys, Hawkins and Thomsons (The Butts were up at the snow so couldn’t make it).  This was a great reunion.  It was John Preddy who organised my transfer from Launceston hospital to Royal Melbourne back at day one.  Thankyou Ruth for a lovely dinner!

On Thursday I caught up with my colleagues at Proway Livestock Equipment to tour the facilities at Bomen and a quick lunch to catch up on business matters.  We currently have a backlog of 24 shearing sheds to be built – not bad for a drought!

 

 

We then met up with Annette Spruhan to see her new block of land on the outskirts of town where she is building a new house,  followed by a lovely dinner at her house in North Wagga,

 

 

Friday involved a few meetings including one with our accountant and then lunch with Col and Jenny Duff, John and Judy Smith and  Tim and Naomi McMullen.  There was a little surprise in this one as we had only arranged to meet the Duffs but Col managed to round up the extras.

I managed to get out to the airport to visit Chris Cabot late on Friday plus a few drinks at the Aero club later on before heading back to the Thomson’s where we were staying for a lovely dinner.  Peter and Liz Dowling joined us as well.

On Saturday morning we headed out to Cootamundra to visit my parents but stopped in to see John and Sandy Hawkins first – which included a tour of their new house.

We had a lovely weekend with my Mum and Dad at Cootamundra and apart from eating and sleeping, and a few walks in the lovely sunshine it was a nice restful weekend.

Funny co-incidence but on Wednesday when we were seated for my blood transfusion we ended up being right next to the Watsons.  James is my woolbroker friend who ‘went through’ his treatment a month or so before me.  He is going through the same ups and downs re blood counts and we tend to meet up weekly at our blood tests and swap stories on blood counts and life in general.  Of late he has been explaining the reasons behind the high wool prices and his prediction for the next 12 months. Wool growers certainly are in the money now.

 

It is interesting that as my treatment moves along new challenges emerge that I have to deal with.  The fall a few weeks ago was once such example.  That had shaken my confidence a little but luckily the healing has progressed well and there is no lasting complication.

Another that has been lingering for a while but has become more prominent recently is peripheral neuropathy – numbness of the feet (and fingers and hands).  This condition is quite common with cancer patients and although I have experienced the symptoms I haven’t really given it much thought.  But now that I am more conscious of how and where I walk I have noticed that my left leg does not function smoothly and both feet become numb from time to time.

There is no easy fix for periphal neuropathy other than time and there is a chance I will have to live with this condition but in the scheme of things it is probably a small price to pay.

Another challenge is the impact the steroids have had on my skin.  I have found that my skin is very thin and delicate and the slightest bump or knock will lead to damage to my skin and subsequent bleeding – which generally will not stop easily due to the low platelet count.  My shins are the most susceptible and it is amazing how often you bump your shins.  I seem to constantly have bandaids on my legs to stem the bleeding!

The blood tests for today were stable and similar to last week being:

Red Blood Cells 91, White Blood Cells 4.0 , Platelets 30, Neutrophils 2.7, Creatinine 93, Magnesium and Potassium are both back in the normal range and I can once again start to reduce these tablets.

On the weekend Jan joined some friends for a walk along the coast from  Torquay to Anglesea.  We decided to head down to Torquay on Saturday and stayed at the RACV club which was very swish.  We also caught up with George and Serena Churnside and Hamish and Amanda McFarlane for dinner on Saturday night.

Lachy and his girlfriend Hanna are now comfortably living in Bali and working from there.  Lachy has to commute to Cairns for client meetings monthly but says this FIFO job has lots of hidden benefits!

Claire is now living in Melbourne full time and still working with Shell but has transferred into their gas division.  she has suddenly taken a great interest in energy policy!

 

 

 

 

And Dougal is still living the gap year dream but is now in Europe riding motor bikes around the Swiss Alps with his good mate Oscar O’Reilly and his dad.

This week we are heading to Wagga to see some friends and family.  We have a special dinner organised to mark 12 months since my original diagnosis of Leukaemia.  Not something to celebrate but certainly surviving to this stage is something to celebrate!