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.