Finding a Path

A Night and A Day

One recent Tuesday night I noticed that my colostomy bag was failing.  Reluctantly I left the warm lounge room and went upstairs to my bedroom.  I started undressing and began sobbing uncontrollably.  I reached the bathroom and tried to remove the colostomy bag with as little mess as possible.  By the time I was in the shower it was hard to tell whether the shower water or tears were greater.  Barbara was asking what she could do to help.  It is too early for her to have to deal with my colostomy bag.  As my tears rolled over me, I realised that this was my lot with the likelihood of things getting worse; it was a night of lamentation!

Wednesday morning an envelope awaited me from Tristan, a young friend 35 years my junior.  There was a lovely card, letter that made me cry and a small booklet.  In the card, Tristan wrote ‘Dear David, thinking of you at this stage of life.  May you find peace and be constantly surrounded by the love of your friends, family and God.  Warmly, Tristan.’

His letter that brought hope after a bleak night (quoted with permission):

         ‘I have been thinking of you often of late, particularly after reading your last few blog posts.  I almost sent you a Facebook message offering some form of condolence but I held back because my intuition told me to wait a little.  Sure enough over the weekend, the waiting paid off.  While I was at a Christian Meditation event I discovered the book that is now included with this letter for you.  I’m glad that with this message I can also provide a gift of practicality!

         ‘It is a short booklet called, ‘Meditation and Dying’ and was written by a member of the World Community for Christian Meditation, the late, Anne McDonnell.  She was afflicted with a terminal form of cancer and wrote this book as a way to explain the experience, and to hopefully encourage others on the journey.  It was the last copy in the store, and immediately I knew I needed to get this for you.

         ‘If you manage to find the time and energy, I hope reading this book is useful for you.

         ‘It has been a pleasure knowing you David, albeit mostly through Facebook these last few years.  I’m glad we got to reconnect at Liz’s 60th birthday party last year.

         ‘I also have a small request to ask of you.  If there is an afterlife, and you see my father Gary….please give him a hug from me.  You can let him know that when it’s my turn to step through the pearly gates I’ll be having a few words with him for leaving so damn early!:)

         ‘Blessings to you David as you continue to be in my thoughts.’

Reading the ‘Meditation and Dying’ booklet the day after a tough night was the perfect antidote.  The message and reflections in the book resonated deeply with me.  I am so glad that tears of lamentation were followed by words of consolation and comfort.

Support of Family and Friends

This morning I became teary as I realised how vital Barbara’s care is.  I would be lost without her but know that my family would step in to provide needed support.  Indeed in looking at a path forward, I have realised that time with family must be a priority.  We have a family dinner once every two weeks but these are large gatherings full of the noise of young life.  So, Barbara and I are getting together once a fortnight separately with our daughter, her fiancé and our youngest son; our eldest son and his family; and our middle son and his family!

You, our wider family and friends have let me know by messages, phone calls and visits of your love and care.  Though you may not think this is much, I can assure you it is.

Enjoying coffee and tea with friends Sharynne and David.  Sharynne
offered to help me compile a book on my life so that my grandchild
can meet their Granddad.  I gladly accepted her offer.

Energy and Food

These days I struggle to write my DHC Hope Blog and The BezCan Project newsletters.  Many hours are spent watching television, particularly detective shows.  At present I am enjoying three American detective shows of the 1990s: Murder She Wrote; Diagnosis Murder; and Matlock – cannot explain why these three, often corny, shows hit the spot!

This Monday, Barbara, our youngest and I saw oncologists Drs Adrian and Kate.  One of the outcomes of this meeting is that Adrian and Kate will arrange for us to meet with the Palliative Care Unit from the Royal Prince Alfred Hospital.

In the two weeks between my visits, my weight dropped from 87.1 kg to 84.4 kgs, a typical sign of the cancer gaining a stronger hold.  So, we talked about helping me eat more.  I am feeling like eating the food of my childhood.  I am enjoying fruit juices and nectars.  We came up with the idea of adding caramel milkshakes to my diet.

With so little energy I find it hard to spend much time with my grandchildren.  I have fond memories of the one grandparent I knew – Granddad – who died in early 1958 when I was seven.  Sadly my brother, only five at that time, does not remember him.  This means it is unlikely that any of my grandchildren will remember me.  On Tuesday granddaughter L enjoyed a chocolate milkshake with sprinkles while I enjoyed caramel.  I will also have a milkshake with granddaughter E.  We are hoping that milkshakes with Granddad might create memories for E and L.

L and I enjoying our milkshakes!

Finding a Path

Over the last few weeks I think I have found parts of a path.  Your encouragement and love helps greatly.  Deep lamentation followed by words of consolation and comfort gave DHC Hope.  A simple idea like having a milkshake with each of my older grandchildren might create memories.

Today has been a comfortable and enjoyable day!

The Beginning of the End

This morning (Wednesday 20 July) Dr Kate Mahon, my oncologist, rang Barbara and I and talked with us over the speaker phone.  Yesterday’s CT scan reveals that at least two of the cancers in my liver have grown by more than 2 cms, which is sizeable growth in the six weeks between CT scans.  There is now a ‘blotch’ in my lung that will be monitored.  This could become cancerous.

At our Monday meeting with Dr Kate, Barbara and I agreed that pain management treatment will be aimed at keeping me pain free.  We will not embark on treatments that are likely to lead to complications and more side effects.  A good example is taking steroids to help me keep eating.  I am feeling less like eating.  Steroids can keep your appetite going but have severe side effects.  I do not want this.  Loss of appetite and weight is a natural progression of cancer in the end stages.  I do not want to add a few days of living at the cost of having steroids and then other drugs to deal with their adverse side effects.

In today’s phone conversation, Dr Kate suggested the indications are living up to six more months, which coincides with my feelings about my situation.  We have agreed with her recommendation of trying the TAS-102 (Trifluridine-Tipiracil), which we will pick up from Chris O’Brien Lifehouse this afternoon.  After we finished talking with Dr Kate, Barbara and I returned to completing the Sydney Morning Herald cryptic crossword.  I found it a bit hard to concentrate on some of the tougher clues.  A bit of normal activity therapy after some serious news!

Since my last DHC Hope blog entry, I have deteriorated everyday.  I started needing Panadol.  Then it moved to Endone (a derivative of morphine).  From Monday night (18 July) it moved to Targin – a 12 hour relief drug related to Endone.

I now sleep 11 hours most nights and get up around 10 am.  I often sleep during the day.  Monday we drove to the Chris O’Brien Lifehouse and Tuesday we drove to Alfred Imaging where I had a CT scan.  I do not feel up to walking.

Besides the mild pain I am experiencing I am having times of queasiness.  I am taking De-Gas and Nexium to help control this: neither have any side effects.  Sometimes I take two Panadol as well to help numb the queasiness.

Moving on to Endone and Targin makes me prone to constipation in my bowel.  Movicol is a satchel of powder I now take twice a day plus other medication to try and keep the bowel moving.  I am also now eating cereal for breakfast with prunes or fruit as a natural means of keeping things moving.  I love two soft boiled eggs at lunch time.

Targin is a long acting drug (12 hours) and is taken twice a day at the same time.  I have chosen 9 o’clock.  I am also taking two Endone a day to manage the pain.  While these are low doses, they have been increased over the last week or so.

I am now more susceptible to cold weather and have experienced some ‘melt-downs’ when I have moved out of heated areas.  It’s like a cold knife is thrust in my back, my asthma plays up and I moan and groan.  It takes a while to recover by sitting on top of a heater to get warm again.  We are now heating my bedroom and the bathroom when the weather is colder.  This has made a huge difference.

Sunday we had a family brunch.  As you know my family are wonderfully supportive, even of their Dad’s quirky choices.  My family is OK with my choice to donate my body to the University of Sydney to be used for practice by medical students.  I have the forms – now it is time to complete and lodge them.

In the near future Dr Kate will introduce us to the palliative care section of the Chris O’Brien Lifehouse and Royal Prince Alfred Hospital.  This will probably involve completing another End of Life Directive Form and will involve agreeing the approach to palliative care.

I am very glad I did not fly to Uganda on Monday night!  I would have coped poorly with the travel, heat and demands on my time.  At this stage I am managing to go with the flow of my new reality.  You are welcome to stay in touch.  However, I am not interested in receiving any messages about healing from this cancer.  The empirical evidence being measured in my regular CT scans shows such beliefs to be false.

Slip Slidin’ Away

Paul Simon is one of my favourite singers and songwriters.  I am listening to his songs as I write this blog entry.  His song Slip Slidin’ Away captures my current situation.  I feel I am now in the last stage of my life.  This blog entry is the story of how I have come to this place over the last five weeks.

Two-Week Holiday

Tuesday 7 to Monday 20 June Barbara and I enjoyed a fortnight’s holiday.  We slept in six different towns; attended the unexpected funeral of my oldest second cousin; visited family and friends; and enjoyed lovely scenery and many delicious meals.

At Dangar Falls, Dorrigo, NSW

On our travels we visited the two towns where we spent our honeymoon forty years ago: Hanging Rock, near Nundle, near Tamworth and Sawtell just south of Coffs Harbour.  

At one of the dams in Hanging Rock

On the beach at Sawtell

Four days we were with our family at Wyndham Worldmark, Kirra Beach on the Gold Coast.

Barbara working on the jigsaw puzzle of a photo of our four
grandchildren given to her for Mothers' Day

Barbara with our two oldest granddaughters on the balcony of our
apartment at Kirra Beach

We returned to Sydney by midday on Monday 20 June because I had an afternoon appointment with Dr Kate Mahon, my oncologist.

We travelled over 2500 kilometres and I drove more than half the distance.  We saw the extensive work on the Pacific Highway stretching from south of Ballina to Port Macquarie.  All along this route a dual carriage roadway is being constructed.  It is the most serious Australian road building I have seen during my lifetime.  It is on my bucket list to view the progress while I can.

On Tuesday (21 June) I was so tired that I slept for a couple of hours in the morning and again in the afternoon.  On this trip I learned that I now easily become irritable and become too forceful in my conversation.  At times I need to say nothing and listen.

Increasing Difficulties

Today (Saturday 9 July) I am writing this blog entry with a twinge of pain in my liver.  Recent days have been with a continuously unsettled stomach.  The dull pain in the liver is easier to take.  I am taking medication to alleviate the stomach upset and two Panadol twice each day.  I now sleep 10 to 11 hours per night and usually sleep once during the day.

Thursday I made the decision to cancel my July 18 to August 6 trip to Uganda.  I realised that I could not cope comfortably enough with this planned eighth trip.  I do not expect to travel again to Uganda.  It is now beyond me.

Last Sunday we enjoyed our annual Christmas in July with our friends the McLeods.  It began at midday, however, I went to bed mid afternoon and slept for two hours.  When I awoke, the house was quiet with only Barbara and I here.  I now find that two hours with people is usually my limit.

The goofy photo from Christmas in July

Going With the Flow

‘Going with the flow’ has been a motto that Barbara and I have been following.  Over the last five years many months have been almost like before the cancer was diagnosed.  Other times have been coping with chemotherapy and other side effects.  This week I have realised that I have probably entered the final stage of my life.

I am finding it harder to go with the flow.  Paul Simon’s Slip Slidin’ Away song has been in my head – the title expresses my feeling about what is now happening in my life.

‘Going with flow’ is likely to become more and more about sleeping and managing pain.  If I am now in the final stage I want it to be quick and not drawn out.  One of my friends who suffered much pain over the last decade expressed the desire to live for many more years.  I feel the opposite – I do not want to live an extended life of pain.  Up until now, I have suffered little pain due to my cancer.

I hope to write a DHC Hope blog entry after our next meeting with my oncologist, Dr Kate.

Three Seasons in One Day

Monday 6 June is Three Seasons in One Day for me:

1. Fall (autumn) meeting with Dr Adrian (Dr Kate is in Chicago at a conference) and nurse Jin.  Barbara and I learned that the experimental drug is not working.  Thursday’s CT scan showed the cancer is growing and small new ones are appearing.  So, I have ceased taking the experimental drug.  In two weeks time I hope to begin taking Lonsurf, a new drug yet to be registered on the Australian PBS system.  At present the pharmacy company is providing it free to patients such as me.
2. Spring attending a lunch of Arthur Young people, mainly partners from the late 1980s.  Many of these people I had not seen since I left Ernst & Young in January 1991, twenty five years ago.  It was an enjoyable trip down memory lane.  AY/EY was the springboard to my own business that Barbara and I ran for twenty four years till February 2014.
3. Summer attending our youngest son’s graduation ceremony tonight.  He has attained a PhD for his research on the AIDS virus.  After the ceremony we will enjoy a dinner with some family and friends.  Truly our children, their partners and our grandchildren are summer to me.

Monday 6 June has been three important experiences in my life.  Naturally, it is hard finding out the experimental drug did not work.  It has thrown me a bit but I am glad I went to the Arthur Young lunch.  I am looking forward to tonight’s graduation and dinner.  Life goes on.  Rather sobering to have such different experiences in one day.

The next hope for stopping the cancer is Lonsurf.  In March 2011 when I was diagnosed with inoperable colon and liver cancer, the prognosis was one to five years of life.  Now five years later I am amazingly well with my liver and kidney still functioning normally.  The prognosis is now about one year of life subject to any of the drugs working.  Lonsurf and the experimental drug did not exist five years ago.

An amazing number of you have been praying for my healing.  Thank you.  My disease is taking its course – my health has declined considerably over the last five years.  The cancer though checked for a while on some occasions, continues to grow.  I am fortunate to be at the longer end of living for someone in my situation.  I am now finding it awkward to receive messages about being healed by God when the evidence is clear that this is not occurring.  I do not mind if you think this is my fault because I lack faith.  I think that most claims for ‘God’s healing’ would be disproven if subjected to scientific empirical testing.  Rather I think that my friend Allan’s view that ‘God is with us through life’s journey’ is more likely to be true.

Over the last five years my health has been an up and down journey.  Overall I am enjoying a good quality of life.  The BezCan Project at Bezallel and Canaan Schools in Kamuli, Uganda has provided an uplifting outward-focused activity for the last three years.  I am sure it has made an enormous difference to my wellbeing.  It is my passion.  My vision is to be able to complete building Canaan School and rehabilitate Bezallel’s infrastructure.  Much has been done but my guess is about another $1 million is needed.  For me this is much more important than my life – 850 children plus their families, staff and others benefit.  I would much rather you pray for The BezCan Project, especially that my colleagues and I working on this project find people willing to donate and the money is used wisely.  If you are able to help in this or introduce me to those who can, then together we are changing a small part of the world for the better – see The BezCan Project website.  Contact me.

Roof is on smaller classroom block at Canaan School