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.