Planning My Future

This eighth session of chemotherapy (Monday 7 to Wednesday 9 December) has been one of the easier ones.  I had some hiccups on Tuesday, slept on Thursday afternoon but have been able to do things.

However, the seventh session two weeks ago was a ‘knock down’ one: Monday (November 23), for the first time, I fell asleep while having chemo at the Chris O’Brien Lifehouse; had lots of hiccups on the Tuesday; felt very tired on Wednesday and Thursday morning.  Lunchtime Thursday was like a fog lifting, which was good as we celebrated American Thanksgiving with family that evening (November 26).  Early Friday morning we headed to Sydney’s western suburbs to pick up Lesley and Stephen for our northern Victorian holiday.  I was quite lethargic for most of that week away.

Hence, I am glad to be in a better situation this Friday (December 15) as a write this blog entry while listening to Nirvana which is rather heavy accompanying music and is now the mellow Roberta Flack as I am editing and uploading to the blog.

CT Scan

At our last meeting with Dr Kate on Monday November 23, Dr Kate explained that the CT scan of the previous Friday showed some reduction in the cancers.  The blood test showed that the cancer indicator level remains within normal range and the liver is functioning well.  It seems this intensive third round of chemotherapy is providing more moderate benefit than the first two rounds (in 2011 and 2014).  This is the expected pattern.

Planning My Future

Barbara and I have agreed to be part of a University of Sydney research program.  This research looks at the journey of chronic cancer patients such as me.  There are two groups.  We are in the group that completes surveys and have done two so far.  The other group are also interviewed.  Theresa is the researcher who works with us.  She was one of my chemo nurses in earlier years.  She is a person of compassionate professionalism.

Chris O'Brien Lifehouse Café

We asked Theresa if we might also do an interview, although it would not be part of the research project.  Thus, late last Monday morning we met for an hour at the Chris O’Brien Lifehouse Café before I began my chemo.  Theresa was fully prepared.  She asked if I would like to know the statistics for a person in my situation, which are – in a group of 100 such people:

• 5 to 10 will live longer than three (3) years;
• 5 to 10 will die within three (3) months; and
• he middle will live six months to two years with the average dying in about a year.

Dr Kate has previously suggested I will probably live at least 3 more years – fortunate to be in the expected longest living group.  In my survey, when asked about life expectancy I wrote 10+ for best, one year for worst and 3 years for middle – very optimistic!

I appreciate this information as it gives me a realistic framework of the likely future.  I do not feel bound by this but I want to live life realistically.  For me, the good news is that I seem likely to live at least to the end of 2017 and so complete our commitment to Bezallel and Canaan Schools through The BezCan Project.

Most of our time we discussed and I wrote my wishes in an ‘Advance Care Directive’, two page document.  When properly completed, this is a legal document that guides my Enduring Guardian (my daughter), family and medical staff as to how I want to be treated medically when I am unable to communicate effectively any more.

So, here are some of the things I have decided in front of Theresa and Barbara:

• I do not want CPR (heart resuscitation) even if the doctors think it could be beneficial.  Theresa explained that the evidence clearly shows that my type of cancer weakens my heart.  Should I survive a heart attack there is unlikely to be any quality of life.  Such a prognosis made this an easy decision!
• I do not want life prolonging treatments at all.  If a life prolonging treatment has been commenced I request that it be discontinued and I receive palliative care.
• I have requested doctors talk with Barbara and our daughter about medical problems.  Barbara and I have appointed our daughter as our Enduring Guardian through a legal document to discuss medical issues with medical people when each of us is unable to do so.
• I wrote down the things that I most value in my life being: independence, enjoyable activities, talking with family and friends, travel, eating and drinking, The BezCan Project in Uganda and good mental capacity.
• I wrote that future situations I would find unacceptable for my health are: confined to bed, relying on others for basic living (eg bathing, eating, toileting), not being able to communicate and loss of mental capacity.

These are key things I have recorded.  We did not complete the ‘Advance Care Directive’ at our meeting as there are some matters Barbara and I would like to discuss with our family.  Their views will influence these matters.  We hope to finalise and I sign the form with Dr Kate as witness in January next year.  Copies of the signed form will be distributed to ensure the Chris O’Brien Lifehouse, Royal Prince Alfred Hospital, my GP, etc know my wishes.

Time to move on from the heavy planning for my future that Barbara, Theresa and I discussed last Monday.

Thanksgiving

Thanksgiving provided quality eating, drinking and enjoying time with family and friends.  Thursday evening November 26 about twenty of us, including members of Kate’s and Camilla’s families, enjoyed this positive American celebration that Barbara and I have followed since 1978.

A week in Numurkah, Northern Victoria

A week’s holiday travelling, eating and drinking and enjoying time with friends provided another quality of life experience for me although I felt tired quire a lot of the time.  Numurkah is a town of almost 5000 people about 30 kilometres north of Shepparton, a major regional centre in northern Victoria.  We stayed at the Lakeside timeshare about 15 minutes walk to the main street.  Travelling with Lesley and Stephen (friends of 40 years and members of The BezCan Poject governance group), we visited places such as Tocumwal and Finley.  We travelled home via Narrandera where we visited Tony one of my high school friends and Janine, his wife, for dinner.  The following morning we enjoyed breakfast in Wagga Wagga with David a friend recently returned from living and serving for two years in India.

View of Numurkah main street

One of our morning coffees!

At the Lakeside, Numurkah

Loving those cheeses and wines at Lakeside apartment, Numurkah

Historic hotel in Tocumwal

1930s caravan at a family museum in Tocumwal

Beach on Murray River in Barmah National Park

Narrandera has many lovely old buildings

Family Dinner

Generally, every week, we have a family gathering – Sunday 6 December being one such occasion.  Club 55 was a bustle with activity: tie dying, babies sleeping, two-year old granddaughters playing and more.  It is wonderful that we can come together but for me, busy gatherings become a cacophony of sound that I find difficult to cope with.  I tend to move in and out of the activities and appreciate my family’s understanding when I spend some of the time doing things such as watching television or retreating to my room.

Christmas Decorating

Yesterday morning two of our daughters-in-law and all of our grandchildren came to make Christmas decorations.  Wonderfully, I felt good and enjoyed spending time with everyone.