Month: August 2018

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!

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.