Renewal of Hope

Barbara and I saw Dr Lisa Horvath this morning for an update on my liver cancer.  The CT scan shows that the cancer has remained dormant since the last scan in September, three months ago.  There are no new lesions.  Today’s blood test shows my liver continues to function normally though I need to drink more liquid to help my kidney function better.  So I am doing that as I write.

This is a wonderful situation as I have been off chemo for three months.  I thank you for your prayers and caring thoughts for me.

It was wonderful to spend three weeks in November in Kamuli, Uganda after last being there in October 2013.  My passion for The BezCan Project has been rekindled.  I have spent 14 weeks of the last two years in Uganda.  I found this fourth time it has been harder to be back in Australia.  We are currently rated the richest country per head in the world.  I find it hard to watch my own society living ‘high on the hog’ after working closely with people who get by day-to-day.

On the way to Dubai I read an OxFam advertisement in an international newspaper stating that the 85 richest people in the world own as much as the poorest 3.5 billion people in the world.  That is almost half the world’s population!  I cannot see how this is fair.  So I have recommitted myself to making the lives of 850 children and 50 staff and their families in two schools in Kamuli, Uganda fairer.  My hope is that I live in reasonable health for the next three years to be able to visit and see the The BezCan Project through.

Bezallel students using the textbooks you financed:
teaching and learning was much easier for both schools in 2014

Going forward DHC’s hope is Barbara, I and you, my readers, and a wider audience will provide the finance to enable us to place Bezallel and Canaan Schools in a fairer position – at least we will make a difference for a few of our fellow disadvantaged citizens of the world.  In addition to the school’s annual subsidy of A$60,000+ (which is currently funded), I am seeking at least $500,000 to enable Canaan Junior School to build a new school on the land The BezCan Project has funded this year and to vastly improve the cobbled together buildings and infrastructure at Bezallel Preparatory Primary School.

Late November beginning construction of the 150 metre wall and drain
to prevent the continuing erosion from water flowing from
Progressive High School into Bezallel School's grounds.

I have been to many countries around the world, including poor ones.  Uganda is the first time I have come to understand better what poverty is through making friends, true friends.  I am sorry that it took to my sixties to realise this.

Wilber, one of my amazing Ugandan friends, and I
under the gum tree at Malamu Conference Centre
on the evening of the dinner I hosted for the two
schools staff and various committees

As I enjoy this time free of chemotherapy, I look realistically at the likelihood of a further one or two more six-month periods of chemo treatment before it does not help my situation.  I have reflected on my life and feel it has largely been very rewarding.  Highlights are being married to Barbara, an incredible person, having four wonderful children and enjoying their partners and their families.  I have enjoyed knowing my Mum’s wider family and Barbara’s wider family.  I have enjoyed making friends in different phases of my life, particularly The Glebe Christian Youth Club (Youngies), Petersham Baptist Church and through running our own business.  My working career at EY and our own business has provided me with skills and knowledge that are being fully utilised in Uganda.  Barbara’s willingness to live moderately has been a key part of us being able to save and invest for our retirement.  In turn, we are now able to significantly fund The BezCan Project.

Our grandchildren enjoying playing with pegs before our Thanksgiving dinner

So DHC has much hope, much hope for the future however long it is!  I hope my next three weeks in Uganda will be last two weeks in February and beginning of March 2015.  Dr Lisa says this looks likely based on my current health.

The Circle of Life

In this blog update I write about the latest visit to the doctor, reflecting on the cycle of life and distilling what principles I live by.

Liver Functioning Normally

Monday October 24, I went to the Chris O’Brien Lifehouse arriving 7.30 am for a blood test.  Had the hassle of no form being held and had to obtain one but I was tested by 8.00 am.  Barbara and I returned at 10.00 am for our appointment with oncologist Dr Kate.

All the blood test indicators were blue, which shows that my blood is in good condition and my liver is functioning normally.  The next appointment is Wednesday 3 December with Dr Lisa.

I asked Dr Kate about my continuing and growing feeling of tiredness.  She explained that this is normal for people undergoing a lot of chemo.  There is a cumulative effect despite the chemo being removed from the body by the kidneys soon after treatment.  One theory is that bone marrow production is affected, which in turn makes the body work harder to generate blood.  Whatever the cause, cumulative build up of tiredness is usual.  I should find energy returning as time passes since my last chemo in September.  However, when I begin the third and following rounds of chemo to combat regrowing cancer, cumulative tiredness will continue to increase.

I do not like this prognosis but I prefer to know as it helps me understand what is taking place.  I cannot overcome such growing tiredness but I can learn to live with it.  I am certainly very grateful to Barbara who has looked after me amazingly through my times of low energy.

The Circle of Life

Six weeks ago our family attended a very meaningful funeral service for a daughter-in-law's close relative.  I thought I would be the first to die in my age group of our wider family but it was not so.  I listened to inspiring eulogies from family and work colleagues.  I learned of another migrant that has made a wonderful contribution to Australian society including my Dad and Barbara.

At a wedding Barbara and I attended soon after, I reflected on the Circle of Life song from the Lion King.  I was seeing the Circle of Life with grandparents, children and grandchildren at this wedding celebration.  Grandchildren ranged from teenagers to lots of babies.

I recently heard on the radio that the Lion King is the most successful musical of all time grossing over US$17 billion.  The Lion King deals with life and death by parable through the African animal kingdom.  I think it touches a chord with people of all ages.  I was immersed in the Circle of Life as I watched people about me and thought of the recent funeral.

Healing

Many of you have kindly prayed for me over the last three years, for which I am grateful.  I have reflected on this too in recent times.  One pastor friend mentioned how he has held ten healing services for Church members and others suffering from cancer and none were healed.  Can I really be healed now that I have a stoma and require a colostomy bag?  I do not expect this to magically disappear and become normal again.

What actual research and empirical testing is done to determine if there are genuine cases of faith healing?  It seems to me that we form our belief systems and interpret events to fit in with them.  This includes secular belief systems such as economics.  It assumes humans always act rationally.  Being rational is only one part of human behaviour.  How can such a system be valid when its view of human behaviour in economic transactions is incomplete?

I remain agnostic in view.  I think the evidence shows that life ends when we die.  That is certainly what we see in the physical sense.  Despite this view, I believe life is worthwhile.  In situations like mine, perhaps it is how we live that is worthwhile rather than whether or not we are healed?

Three Principles

This year, and it has intensified in the last two months, I have been more pessimistic.  Besides my own woes, I have seen much suffering among relatives, friends and the world (eg Ebola and the Middle East).  This has challenged my usually optimistic approach to life.  Overall most people seem to struggle throughout their lives: and yet we have a will to live!

I have been seriously reflecting on some of the situations I have encountered lately.  This has resulted in distilling three key principles for living.  This, in turn, has helped me to return towards an optimistic view of life.  The principles are love, influence and cooperation.

Love

1 Corinthians chapter 13 in the New Testament of the Bible is an amazing description of what love is.  Such love surmounts obstacles and can suspend our judgment of people in difficult situations.  I have experienced such this year.  I see a core element of love is respect.  True love is base around respect for each person we love.  I think ‘tough love’ can be productive when built from underlying respect for the person.  In situations this year, I found my love increased when people were more open.  This helped me see the depth of issues and the hurt that was there.  Such personal revelation is respected through privacy.

On reflection, I think that the love you have given me over the last three years is greater due to you gaining insight into my situation through this blog and in personal conversations.

Influence

As a teenager, I could be ruthless and would quite happily demean some one on my forward march.  During my time of being a Christian I realised this was wrong but it took many years for this to reduce and it can still resurface.  I believed in being in control and controlling situations.  I thought you could control people.  That was my state of mind when I became a parent.  My children taught me you never can truly control another person.  We see this in totalitarian regimes: when they fall, people can be completely different.  Think of Spain: how quickly they changed after 40 years of dictatorship ended in the mid 1970s.

I do think we can influence another person.  This influence works for good when done in love based on respect.  This leads to my third principle.

Cooperation

When I celebrated my 60th birthday four years ago, I spoke about cooperation.  That year it hit me how we only live because human beings cooperate with each other.  You can think about any aspect of life and it depends on humans cooperating.  Think about your home: people involved in building it; people involved in maintaining it; people involved in making the products you bring into your home; people growing the food, harnessing the water – two essentials for life; people living in the home together; people visiting.  Add it up and there are thousands, if not millions, of fellow human beings involved when you trace to the production of goods and services provided over the history of your home.

I think the highest form of human activity is cooperation (for good, not evil).  People are built up.  For me, The BezCan Project is such an activity.  I did not expect to find something so new and worthwhile in my sixties: new project, new friends, new country!  I made three trips in 2013 but have been unable to travel there for a year.  I am looking forward to spending three weeks in Kamuli, Uganda in November.  Despite this, we have been able to work together and achieve much.  We have even discussed and dealt with serious governance matters.

I think cooperation for good builds on love and influence.  When I think of the World’s five great religions: Judaism, Christianity, Islam, Hinduism and Buddhism; there is a precious ideal that Christianity offers.  This ideal is forgiveness and reconciliation.  Forgiveness releases us from bondage to forces such as enmity and revenge.  Reconciliation enables us to work with those who have wronged us and to work through problems that arise.  Forgiveness and reconciliation underlie love.  Indeed, does love exist without them?

Clarifying what I see as the three key principles I want to live by – love, influence and cooperation – has come about through having a difficult year personally and being part of other people’s difficult situations.  Seems to be a part of human nature that trial and tribulation lead us to some of our most serious thinking.

I’ll finish this blog entry with some photos from our recent travels.

On Seven Mile Beach, Tasmania in September

Barbara & I at Australia's oldest Bridge, Richmond, Tasmania

Barbara in the Circus, Battery Point, Hobart, Tasmania

At Wine Glass Bay, Freycinet, Tasmania

On our way into Wilpena Pound, Flinders Ranges, South Australia

With my brother at an old farmstead ruin, Flinders Ranges

Barbara going for a drive in my brother's new car

Sunset over Wilpena Pound

Life is a Double-Edged Sword

This morning Barbara and I saw Dr Kate who is standing in for Dr Lisa Horvath.  Good news – today’s blood test shows my liver is working normally.  Meanwhile, the CT scan shows the cancer has remained stable over the last two months.  The stagnation means that I am stopping chemotherapy immediately.

This a ‘double-edged sword’ situation as it is wonderful to be free of chemo again but it is because my cancer has not been reduced further.  Dr Kate explained that for people with bowel cancer that has gone to the liver: some fade quickly; others live for a few years or so; and some live for many years.  It all depends on the response to the chemotherapy.  My response is at the top end and the cancer in the liver tends to fossilise, indicating it is largely dead.  However, you can never predict the outcome.

I am hoping that I will have a year and a half or more of not needing chemotherapy.  I will be monitored by six weekly consultations with the doctor preceded by a blood test.  I will have a CT scan every three months.  If I feel my health is declining or when the blood tests and CT scan show that the cancer is growing again, the third round of chemotherapy will begin.

Restoration and Reunions

Since my previous blog entry, Barbara and I enjoyed ten days at Golden Beach, on the Sunshine Coast in Queensland between rounds 12 and 13 of chemo.  It was wonderful to enjoy warm sunshine for half the time before the much-needed rain set in.

We only used the car twice during our time at the WorldMark resort, grocery shopping and driving into the hinterland and back down the Sunshine Coast from Noosa Heads.  We enjoyed the Taste Spuds local café and the salt and pepper calamari at the nearby Power Boat Club.  We did a few walks, including into Caloundra.  Barbara, with a little help from me, completed the Copenhagen map jigsaw recently given to us.

Completed Copenhagen Map jigsaw

Selfie on our walk with Caloundra in the background

Barbara at Noosa Heads

A weekend ago (Saturday 30 August to Monday 1 September), we drove to Rylestone to attend a Mixed Blessings reunion concert and church service.  Barbara sang with this a-cappella group over ten years ago and has enjoyed continuing friendship with a number of the group’s members.

We then journeyed on to Mudgee where we stayed on Sunday night.  On Monday we enjoyed the excellent Gulgong Pioneers Museum staffed by volunteers.  We then drove on to Wellington for lunch, continuing on through Yeoval and Molong to Orange for afternoon tea.  Next we drove to Bathurst and enjoyed dinner at the home of close friends.  We arrived home at 11.30 pm after a great three day break.

Mixed Blessings at the Anglican Church, Rylestone

Mixed Blessings outside Rylestone Uniting Church

Old tools at Gulgong Pioneers Museum

Tuesday night (2 September), our children and partners hosted Barbara’s birthday dinner.  Barbara received FaceBook postings, emails including from each of her four siblings and phone calls.  It was an especially delightful birthday.

So, our life since the last blog entry has been a double-edged sword, a mixture of good and bad news, happy and sad situations and being reminded of the finiteness of our life on this wonderful planet.

Off to Uganda in November

Barbara and I saw Dr Lisa Horvath this morning.  Good news – today’s blood test shows my liver is working normally.  Subject to the CT scan on 5 September, I will either continue chemotherapy, if the cancer is still reducing, or stop, if there is no reduction.  Whichever way it goes in September, Dr Lisa says I can go to Uganda in November.  Thus, I am planning for the trip (which will be subject to any problems in eastern Africa with the Ebola virus).

I mentioned to Dr Lisa that my mouth is sore, especially immediately following chemo, and I am feeling tired most of the time.  She acknowledged these are normal side effects.  They are worth it if the cancer keeps reducing.

Chris O'Brien Lifehouse cancer centre at
Royal Prince Alfred complex

Green Tarago to Red RAV4

Last Thursday we traded in our British racing green Toyota Tarago that has been a wonderful family vehicle for the last ten years and bought a 2013 current model red Toyota RAV4 Cruiser.  Why Toyota again?  They are reliable and the dealership is at the Parramatta Road corner with Ross Street.  So, it is a short drive up Ross Street for vehicle service.

At Sydney City Toyota farewelling the Tarago

Greeting our RAV4

We are planning extra trips to enjoy driving the RAV4.  Friday we are heading for Golden Beach at the southern end of the Queensland Sunshine Coast for ten days.  End of August we are going to Rylestone, in the Capertee Valley north of Lithgow to hear Mixed Blessings sing (Barbara sang with Mixed Blessings over fifteen years ago).  We think we will continue driving westwards afterwards.  And we have decided on a trip to Wilpena Pound in late September, early October.  We hope to visit my second cousin in Adelaide and then return home with our friend Grace.  By then I trust we will have an ‘Oh what a feeling’ for the RAV4.

Reflections

A few blog entries ago, I talked about writing some reflections on my life.  Here is my first one about my Granddad.

Arthur Thomas Neil circa 1913/4

Arthur Thomas Neil was my mother’s father – the only grandparent my brother, Michael, and I knew.  My Dad was born in 1897 and his parents died before he married my Mum in 1948.  My Mum’s mother died from Golden Staph infection in 1920, just a few weeks after Mum was born.

I have very fond memories of Granddad.  I remember meeting him at the bowling club in St Leonards Park, North Sydney.  I remember him taking us for drives in his car.  The car had an indicator light between the front and back doors that popped out when he wanted to turn a corner.  He did not have to give an arm signal, like other drivers.  One trip I remember was to the wildlife park near Castle Hill, complete with a talking cockatoo.  He, my aunts and uncles came to Christmas Day functions that my parents hosted at the gym (where we lived).

My memories of him are so pleasant that I want my grandchildren to call me Granddad.

I remember when Mum received the news that Granddad had died in early 1958, when I was seven.  She cried, which I thought was unnecessary, as we knew he was sick and dying.  I still have a similar attitude to death.  I know I am unusual compared with most people.  Death is a stark reality in life, which I think we do not face realistically enough.  Death is always more tragic at a younger rather than older age.  The world inflicts unnecessary death on its peoples due to wars, famines and other human inflicted problems as we are seeing so starkly in the Middle East.  I think we now spend too much time and money in the modern world, keeping people alive instead of allowing nature to take its course.  I wonder where sit I in this scenario? 

Christmas in July

Saturday, 12 July we gathered for our annual Christmas in July at Club 55.  This year everyone was here, the first time for many years.  Our eldest instigated Christmas in July in 1999 when a family of our close friends since the late 1980s through Petersham Baptist Church, moved to Albury.  Every year we have held Christmas in July, May, June, August, even in September – in Albury, Bathurst , Glebe, Canberra, Katoomba, Port Macquarie.  Christmas in July has created a strong link and cemented the bonds between our families so that we are intertwined.

Our generations interweave about 15 years apart.  I cannot over emphasise how much this union means to me.  Family can be truly broader than just blood relatives.

So, here are some photos for you.