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.
