David Ivo Hey-Cunningham 8/5/50 - 28/9/16

David passed away peacefully this morning. There will be no funeral as David donated his body to Sydney University for medical research.

In lieu of flowers, contributions to the BezCan project would be greatly appreciated. Donations can be made via the BezCan website.

Thank you for all your love, prayers, concern and support. It has been a very special time for us as together we said goodbye to David.

We have many wonderful memories and thankful hearts for a life well lived.

First Birthday

Ten photos celebrate the first birthday of our youngest grandchild.  Three grandparents, family and some friends gathered together in Petersham Park for an early lunch picnic and cake.

Friday Became Family Day

From a crippling Thursday, Friday and Saturday have been amazingly good.  Friday, my brother Michael arrived for his visit at 11.00 am.  Unexpectedly, over the day, nearly all the family arrived with the last leaving after dinner at 7.30 pm.  An afternoon sleep carried me through.  I am still OK today.  Seems the change in medication is working.

Today I am providing two blog entries: Friday Became Family Day and S’s First Birthday.

Milkshakes

Brothers D & M, grandchildren Z and E enjoying our milkshakes – the tradition is growing!

Lunch

E and Z joined Barbara and I in eating Arnott’s Saos, vegemite and cheese for lunch.  Love their moustaches.

Thing 1 and 2

E’s idea to have she and Z dress as Thing 1 and Thing 2, visiting Michael and I in the backyard.

Brothers

The brothers of sixty-four years.

Relaxing

Grandma, uncle and aunt relaxing with E and Z before dinner.

Shopping

J, E and Z and W and I walked up the street to the nearby Chinese noodle and food restaurant to buy dinner.  Love W’s photo of E and Z with me!

Dinner

E and Z played the piano before we sat down and enjoyed out dinner together.

Moon

Yesterday my friend LG from Singapore emailed this message:

'I don't know if you can see the moon in Sydney.  At this time of the lunar year the moon is supposed to be at its brightest and roundest, and we Chinese celebrate the mid-autumn festival.  It's cold and wet and moonless here but anyway, happy mid-autumn festival to you and your family.'

LG, the moon was bright here last night.  The photo is taken looking east from our backyard with the shadow of our neighbour's roofline and trees around us.  A wonderful end of a special day.

The Circle of Life

Disney’s much-loved The Lion King is an animated movie aimed at children that explains life as a Circle.  Our family is in the midst of this Circle of Life.

This is a special DHC Hope blog entry being published more widely to share what is happening.   Thursday (15 September) I needed medical attention.  In October our daughter is marrying her fiancé and J, K, E and Z are expecting another member in their family.

My Liver is Failing

Tuesday night I experienced severe pain in my liver, which despite taking five Endone continued into the morning.  The pain, which is less now, felt like a knife being continuously twisted in the middle of my liver.

Barbara helped me dress to minimise the pain.  Great relief came when I sat in the rocker-recliner chair in our lounge room.  I ate breakfast and watch TV comfortably.  However, when I got up and moved the pain soared.

Despite my situation, we were able to enjoy a visit from Jane of World Vision to thank her for introducing The BezCan Project to the Global Development Group.  We shared some good news that BezCan will be able do some building work at each school due to additional donations.  I aim to share this good news in a BezCan newsletter next week.

Mid morning Barbara drove me to Dr Naomi Ginges’ surgery.  I struggled to walk the short distance from the car.

Home Visits

Our consultation was intense and included Dr Naomi phoning Phil Sheard at Palliative Care to discuss my treatment.  My medication is changed from 30 mg of Targin to 30 mg of oxycodone hydrochloride twice per day beginning tonight.  The poor functioning of my liver means that one of the ingredients in Targin is not breaking down and is causing the pain.  I took a double dose of Endone when I got home.  Hopefully from tonight the pain will be controlled.

From next Thursday, Dr Naomi will begin weekly home visits.  Phil from Palliative Care will be visiting this coming Monday and Thursday and regularly after that.  This is a big change that shows the seriousness of my situation.

Barbara and I appreciate how the Australian Health Care System has swung into action.  Naomi’s General Practice began bulk billing from today.  This means they charge the Australian Government for my consultations, here at home or at their surgery.  Naomi told me ‘you have paid your taxes and medical bills; now it is time for us to look after you.’  Wow, what a wonderful country we live in.  We thanked her for the quality and kindness of her care; our typical experience.

October Wedding

Late Tuesday afternoon our daughter brought her fiancé and his parents here for afternoon tea.  It is the first time the six of us have met at the same time.  We spent an hour together celebrating the upcoming marriage, talking about the wedding, sharing family stories, laughing and singing ‘Happy Birthday’.  (Three photos in different lighting.)

A Decade of Four Weddings

A decade ago our eldest son married.  Now almost exactly one decade later, the last of our children is marrying.  Each wedding has been different; full of love with friends and families thrilled each marriage took place.

I know that you my readers, our family and friends are thrilled our daughter and her fiancé are marrying in mid October.  They have planned a small wedding of thirty people, including children, here at Club 55.  It will be a short ceremony lead by a marriage celebrant followed by a catered reception during the late afternoon.

Both of them want to make it comfortable for me to be present.  I can just cope with two to three hours.  Barbara and I are grateful for their generosity.

This means that many family members and friends who are dear to them will not be attending.  I ask you to respect their decision, know that they love you and send them greetings of joy and blessing as they ‘officially’ begin their lives together.

October Birth

Soon after the wedding, we are expecting the birth of our fifth grandchild, the third child of our eldest son and his wife.

I am glad that I will have seen my four children happily married, carving out their lives with their spouses, growing their careers and pursuing their dreams.  I am glad that I will have met five of my grandchildren.  From what I can see, my family will be close to each other and our grandchildren are surrounded by love.

Symptoms Management

Much has happened since my last blog entry.  It is harder to write now.  I am not sure how much I will write this time.  I am putting the health and treatment update first and then sharing some stories to give you a choice of a long or short update.

Symptoms Management

I have reached the stage where we are no longer treating the cancer in my bowel and liver.  This means the cancer now does its own thing.  Yesterday’s blood test shows that the liver is not working properly.

Now the approach is called symptoms management, which means I am being treated for symptoms that display themselves.  Most commonly this will be pain.  It has taken a while to work out how to manage the symptoms but a path seems to have been found:

• I was taking 25mg of Targin at 9.00 am and 9.00 pm which is being increased to the maximum recommended dose of 30mg (twice a day) to control the basic pain in the liver.
• I also take 5 mg of Endone as needed to help control the pain.  With the higher Targin dosage I require less Endone.  I probably take five tablets a day on average.
• Tuesday 30 August was the breakthrough change in treatment.  I had been always feeling queasy (nauseas) and could not shake it.  Now I am taking one 4 mg of Dexamethasone tablet at 8.00 am each day.

Dr Kate Mahon, my oncologist continues to be my main doctor.  This afternoon Barbara and I met with Dr Judith Lacey a symptoms management specialist at Chris O’Brien Lifehouse.  She has prescribed some changes in my treatment and introduced more drugs to deal with arising issues.  She advised that the liver has increased greatly in size and has spread from the right sight of my body across the left.  Dr Lacey is passing her findings to Dr Kate Mahon, the Community Nursing Palliative Care and Dr Naomi my GP (general practitioner).

We have now met twice with people from Community Nursing Palliative Care.  We expect to be meeting every two weeks and expect that the Palliative Care will become the main medical people involved in my treatment.  We are also meeting more with our local GP, who is necessary as they will often be providing the script for the medicine that Palliative Care want me to use.

My hope is that the existing and new medication will work for some time, which you are welcome to pray for.  It is what keeps me comfortable.

The journey on my current path is now very different from earlier this year:

• My family is my priority.  Each two weeks we have arranged for various combinations of members of the family gather including an all family time once a fortnight.
• I am still able to meet with people for up to two hours.
• I no longer expect to make overseas trips but maybe some within Australia.  Sadly this means I probably saw my Ugandan friends for the last time in November 2015.  Sadly this means I last saw Barbara’s American family and American and Canadian friends in May and June 2012.  I am not able to comfortably receive visitors from overseas as we cannot provide the accommodation and I could only spend a small amount of time with visitors who have travelled so far.
• It is hard for me to travel the short distance into the city.  We tend to use taxis door to door.  I am walking much less and Barbara is driving me to places, which are mainly for medical needs.

Some Stories

In the rest of this blog entry I share some of the stories occurring on my journey lately.

‘I’m Falling, I’m Falling!’

(Wednesday 31 August.)  I arose from my bed carrying four small items from the shelf next to my bed to the chest of drawers at the end of my bed.  As I walked I felt I was falling left.  Next thing I was on the floor between the end of my bed and the chest of drawers and hit my head on the windowsill.  

I managed to speak to Barbara in the kitchen on the intercom as she was coming up to assist me in response to my yelling.  We decided it would be best for me to lie down.  About 40 minutes later I got dressed and came down for breakfast.  I had not hurt myself.  I did not go back to bed during the day and was able to do several things as well as watch TV, my usual pastime these days.

‘I’m Talking, I’m Talking!’

(Thursday 1 September.)  Barbara and I were invited to speak to the staff of the Australian Institute of Company Directors at morning tea.  They were a wonderful client of our business for over twenty years.  Once a month they support a charity nominated by staff.  The National Education Group nominated The BezCan Project.  Now we have proper status through the Global Development Group we can be included in such fundraisers.

Sitting down, I spoke for about ten minutes.  I was warmly introduced and thanked by two senior staff members, which added to how I was received.  It felt good being able to give this short talk.  If I had been asked to do it the week before I could not because my health was too poor.  Having taken the Dexamethasone for a few days, my stamina had improved greatly.  Today, one week later I think I could have done it but it would have been difficult as I had a serious relapse this Tuesday.

‘I’m Swelling, I’m Swelling!’

(Tuesday 6 September.)  I gradually felt worse as the day progressed.  Climbing the stairs to our first floor became more difficult.  My left leg felt stiff.  Going to bed I noticed that I had ‘old man’ swollen ankles.  Barbara helped put me comfortably to bed.

In the morning the swelling had subsided but Barbara and I felt we needed medical advice.  Sadly we had to cancel two social bookings: one with a friend and one with some family.  We were at the GPs at 10.00 am consulting with Dr Naomi.  It was a while since we had seen her so we brought her up to date.  (We had seen a different doctor on recent visits.)  Yes, there was some swelling in both legs.  1.30 pm I had an ultra sound on my left leg to check for potential blood clots – none were found.  This was followed by a blood test that shows deteriorating performance from the liver.

Today I am feeling more ‘normal’.  I am listening to Fleetwood Mack as I make this entry.  I am using my computer in the recliner seat in the lounge room with the footrest up.  Sitting with the footrest up seems to help control the swelling.  I will keep doing this to reduce the risk of swelling returning.

Dr Lacey asked me to do squats four times a day, to walk more and keep climbing the stairs.  My first two lots of four squats were hard.  I hold on between two benches in the kitchen so that I will not fall over.

Journeying with Our Family

Our family made sure that Barbara celebrated her birthday and I, Fathers’ Day.  Barbara enjoyed a quiet birthday on Friday celebrating with some friends.  Saturday the family made birthday dreams come true: going to swimming lessons with one of the families; both families taking Barbara to lunch at a wonderful kids friendly indoor playground and café; Barangaroo in afternoon with our youngest son; Thai dinner here at home; our daughter and fiancé completing the day taking Barbara to Cirque du Soleil.

Sunday, Fathers’ Day my four children took me on a picnic in a nearby park.  We had a wonderful time talking and being together on a sunny spring afternoon.

These events epitomise what has happened within our family over the last few months.  The benefits of deciding to be open are now helping us as a family.  We have been able to discuss many things including palliative care.  The family is OK with me donating my body to the University of Sydney to be used as a cadaver by medical students training to be doctors.  They have accepted Barbara and my decision not to seek more chemotherapy treatment.

I now feel that I am walking on my journey with my family.  While I thought I would be walking with Barbara I am now walking with all of my family: my children their spouses, the grandchildren and my brother.  This is beyond my wildest dreams.  While they cannot bear the pain, they are helping in every other way.  Barbara and my loads are eased.  Unbelievable blessing!

Remembering Granddad – Thank you for sharing your memories of grandparents from as young as 2 and 3.  This has given me hope with having milkshakes with my eldest grandchildren.  Last blog shows L with me, this one shows E who has since been joined by Z in another photo shoot.

Creating Memories – We have two events coming up in our family that are wonderful and I leave with you as an expression of My Hope.  Our daughter is marrying her fiancé with all our family able to attend.  This will be followed soon after with the birth of our fifth grandchild.  My family has a wonderful future beckoning.

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!