Month: September 2018

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.