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.
