A Hearty Greeting

Monday 24 August Barbara and I attended my appointment with Dr Raj Puranik, cardiologist (heart specialist) at Alfred Cardiology, RPAH Medical Centre –a twenty-minute walk from home.

The consultation began with a nurse taking a twenty-minute ultra sound of my heart.  At times I heard the blood pumping through each of the four valves within my heart.  Each one sounded different.

As has been so typical of our experiences this year with all the different doctors I have seen and treatments I have had, Dr Raj was caring, professional and very informative.  The ultrasound confirmed that the electricity moving down the nerves in my heart is a bit slower than normal.  Otherwise, the heart is functioning normally.  Raj asked about my overall health situation and took lots of notes.  He advised that he did not want to do any testing such as an ECG conducted while I was exercising that might cause discomfort or be too interventionist.  He asked me to contact him if I became concerned about my heart function.

We left feeling glad that there is no significant issue with my heart.  I felt very well looked after, yet again.

This year besides seeing my GP (general practitioner doctor), I have seen my regular oncologist, a new radiation oncologist, my colorectal surgeon, a new urological surgeon and a new cardiologist.  Three times I have had day surgery procedures in hospital: two flexi sigmoidoscopies and one stent inserted.  I have had radiation five days a week over five weeks and now I am on my third cycle of intensive chemotherapy.  All of these have occurred in the last six months!

I hope that the rest of this year consists only of the chemo for three days every two weeks and seeing my regular oncologist!  I remain so grateful for the Australian medical system that provides such good medical care at moderate or no additional cost to our moderately priced private medical insurance.  If you watch Last Cab to Darwin, you will see this service depicted in action in Broken Hill and Darwin.

Last Cab to Darwin

Writing this blog entry

Today, Friday 21 August, Barbara and I saw Last Cab to Darwin at Hoyts Cinema, Broadway for my diversion therapy:

“Rex, a Broken Hill [taxi] cab driver, has spent his life avoiding getting close to people.  One day, he discovers he is dying of stomach cancer.  He doesn’t want to be forced to rely on anyone so he decides to leave his home alone and drive 3000kms across the continent to Darwin, where the recently passed euthanasia laws lead him to believe he can be in control of his own death.  On this epic journey he does things and meets people who force him to re-evaluate his life.”

         Quote from website < http://www.lastcab.com.au/lastcab.com.au/Synopsis.html>

I have found the last week or so difficult.  This movie is an original story about someone with more advanced cancer than mine.  He thinks he wants the right to die on his own terms.  In addition to looking at euthanasia, it realistically portrays aspects of Australian society: outback towns; working class; aborigines; and doctors, nurses and the medical system – the main themes.  While some of the language is strong, again it is realistic and not overdone.  It is one of the best films I have seen.

I identified with Rex’s journey with cancer and wanting the right to choose life or death when you are so sick that there is only death ahead.  At times in the last week I felt that things were ‘terminal’ but I know this is my emotional reaction to a period of day-after-day discomfort.

Wednesday 12 August, the stent was inserted between my left kidney and bladder.  Yes, I walked home from hospital but, as advised by nurses, I passed some blood in my urine for many days, especially in the morning.  I also felt discomfort in my left back area, which is due to the left kidney.  This seems to have settled down now.  I have booked my follow up appointment with Dr Vasilaras on Wednesday 1 October.  Every six months the stent will be replaced.

Meanwhile, before fully recovering from the stent insertion, I had the first of my third round of intensive chemotherapy from Monday 17 to Wednesday 19 August.  As usual, I was well looked after.  Early Monday morning I had the required blood test before treatment.  This showed the creatinine level in my left kidney continued to be high.  My chemo treatment only went ahead after it was cleared by Dr Mahon, my oncologist.  In the overall situation the most vital thing is having chemotherapy for it attacks the cancer that is growing again in the liver.  Hence, I was very relieved when they told me the treatment would go ahead.

I had forgotten how this intensive chemo affects me: increased tiredness and nausea are two of the main things.  Late Wednesday afternoon I was able to participate in a Skype call with Canaan School to discuss building matters at their new primary campus site.  However, Wednesday night when our daughter came for dinner, I hardly said a word because I felt so blah.  Yesterday, Thursday, our daughter-in-law and two children were here – at least I said more during this visit.  I am glad that I am feeling more normal today and am able to write this blog update.

Later Thursday afternoon I saw my General Practitioner (GP) to begin the investigation of my heart.  This arises from the ECG test taken ten days ago in the pre-admission procedures before the stent operation.  The ECG taken at the GPs showed the same issue in the function of part of the nerves in the heart.  Now, I have an appointment with a cardiac specialist at 4.30 pm this coming Monday afternoon.  My hope is that my heart will not be an issue.

While I have been feeling sorry for myself over the last week or so I have deliberately thought about several of you my friends who read this blog.  Some of you have had chronic health issues for years, even decades.  Some of you experience pain that requires regular medication.  My cancer was diagnosed just over four years ago and I have only occasionally experienced mild pain.  I have been grappling in my mind to keep things in a reasonable perspective.  This is so much easier today because I feel much better and enjoyed an informative, challenging, excellent Australian movie – Last Cab to Darwin!  A bonus is that Barbara and I have visited most of the places featured in the movie.

Stent Inserted

Wednesday 12 August, Barbara and I arrived 7.00am at Royal Prince Alfred (RPA) Hospital.  We were asked to arrive this early in case Dr Arthur Vasilaras first two-hour operation did not occur.  We stayed in the waiting room until 10.30 am when I was called for the operation.

First I went to the changing area where Barbara had to say goodbye.  Next it was to the bed area where I climbed into a narrow bed that was too short for me.  Then I was wheeled to the anteroom at operating theatre no. 10.  Veronica the anaesthetist and Dr Vasilaras talked with me.  I said to Veronica that I would like to walk home, which she advised against.  Dr Vasilaras went over the plan for the 26cm/10 inch stent insertion between my left kidney and bladder.

Next moment, it seemed, I was waking up from the general anaesthetic in the recovery area.  I felt OK.  I noticed a clock showing 11.30am.  Soon I was wheeled back to the recovery section of the admissions area.  My clothes bag was delivered and I searched through for the Daily Telegraph, pen and glasses and resumed doing the crosswords.  I enjoyed an apple juice and cheese sandwich.

By noon I was awaiting Barbara who soon arrived.  The discharge procedure over we left.  I said I wanted to walk home.  We stopped at a café for a much needed vegetarian lunch.  We were home by 1.00 pm or so.  I had kept my record of walking home after all procedures involving an anaesthetic that I have had since 2013.  Unfortunately, it was during the five days a week, five weeks radiation that I needed to drive because I could not walk the distance without visiting a toilet.

Now back at home I have been drinking many glasses of water to flush out my system.  Sometimes there is a little pain going to the toilet and today I have felt some pain in my left kidney.  I have been going to the toilet every two hours or less, including during last night.  I am hoping this will all settle down by tonight.

I have a few things to do regarding medical appointments:

• arranging to see Dr Vasilaras in about six weeks for a consultation and for the first replacement of the stent in about six months from now
• delivering a letter from the hospital to the GP (general practitioner practice) that I use
• arranging an appointment at the GP practice and seeking a referral to a heart specialist to follow up on the concerns with my ECG – this additional issue has certainly annoyed me
• on Monday 17 August beginning chemotherapy 3 days every two weeks for the next six months – this is the key medical need I have as the growing cancer in the liver needs to be attacked

I am taking antibiotics to reduce the risk of infection following the stent insertion.  I feel a bit like a pincushion at the moment due to all the medical appointments Barbara and I have attended since I returned from Uganda two weeks ago today.  Now I have six months of regular needle prodding to look forward too – ha, ha!

Thank you for your kind messages over recent times. 

Stent Insertion – Change of Plans

Within 15 minutes of my last blog entry, Dr Vasilaras rang.  There is a change of plans.  He wanted to do the operation on Saturday.  When I told him that my private health insurance did not include private hospitals he insisted on using Royal Prince Alfred.  So, now the stent will be inserted next Wednesday.

Stent Insertion

Today, I spent my late afternoon at Dr Vasilaras’ surgery: waiting to see him, seeing him and booking Strathfield Private Hospitable for insertion of a 26cm stent tomorrow, Friday 7 August.  The stent will be inserted between my bladder and my left kidney to prevent the duct that joins these organs from being blocked by a lymph node that has grown in size.  Dr Vasilaras showed me the discolouring of the left kidney being caused by the current level of blockage on the CT scans that I brought with me to the appointment.

I am receiving excellent service in being admitted to hospital for day surgery the day after seeing Dr Vasilaras for the first time.  Why is this happening?  It is so I can begin my third round of intensive chemotherapy on Monday 17 August.  The new cancer lesions growing in my liver need to be dealt with.

Barbara and I are due at Strathfield Private Hospital at 9.30 am.  The procedure will be done in the morning and I should be back home in the afternoon.  Unfortunately our private health cover is for public hospital only, which means we will be paying for the use of the operating theatres and any accommodation at the hospital.

Every six months Dr Vasilaras will have to replace the stent.  Unfortunately, I am becoming a higher maintenance person.  This is the third time this year I have needed day surgery.  I will arrange for the future stent replacements to be done at Royal Prince Alfred Hospital, which is a public hospital.

Overall I am glad that the stent insertion can be done so quickly and that I was also able to spend over three weeks on my sixth trip to Uganda before starting intensive chemotherapy for the third time.

I will blog again after I am recovered back here at home.

Chemotherapy Scheduled in Two Weeks

This morning (Monday 3 August) Barbara and I met with my oncologist Dr Kate Mahon.  The blood test this morning showed that my liver is functioning reasonably normally: two indicators are above normal and three are within normal range.  Kate’s interpretation is that overall things are under control.

The blood test also showed that there some deterioration has occurred in the kidney function.  This is due to the lymph node that is pressing on the tube from the right kidney.  I see the urologist on Thursday afternoon.  The three of us are hoping that he will be able to insert a stent this Friday.

Why is Friday important?  Kate wants chemotherapy to start about a week after the stent has been inserted.  The blood test on the morning of the chemo can be used to check that the kidney has settled down and it is OK to have chemo teatment.  The chemotherapy is scheduled to start in two weeks from Monday 17 August.  It will be the same chemotherapies as last year.  There will be three days of treatment every two weeks.

Some very good news is that we can plan for activities in between treatments and sometimes have a gap of three weeks instead of two between treatments.  This means that we can travel to near Mudgee with our small group, ESFNG (Every Second Friday Night Group) from Monday to Thursday next week; to Port Stephens in early September; to New Zealand with one of our sons and his family in early October; and I can visit Uganda for two weeks in late October/early November.

This is very good news and I have more choices and freedom than I expected.

I have been fairly busy since I issued The BezCan Project’s second newsletter for the year that shared the good news of the Church service on Sunday 26 July.  My diary since then has been:

• Monday 27 July – afternoon meeting at Bezallel School to look at accounting records; doing some other BezCan work; and saying goodbye to some people who called by.
• Tuesday 28 – early morning farewells at Bezallel and Canaan Schools.  Wilber (head teacher at Canaan), Rebecca (Wilber’s wife), Beatrice (head teacher at Bezallel) and I travelling by car to Banana Village, Entebbe.  We discussed various things in the car, at lunch at Good African Café (Kampala) and, finally, at Banana Village.
• Wednesday 29 – quiet morning at Banana Village after a great sleep.  Car took me to Entebbe Airport, the start of my journey home.  (I upgraded to business class so that I could sleep flat on the long haul from Abu Dhabi to Sydney.)
• Arrived home 7 pm Thursday night feeling pretty good.  Barbara and I went to nearby Pizza Da Noi for a meal where I talked and talked about my incredible Ugandan experience from when Barbara left Uganda.  Slept well that night.
• Friday 31 – caught up on things.
• Saturday 1 August – breakfast at Café Lattetude in Penrith with Lesley and Steve (members of BezCan governance group) to celebrate his upcoming birthday.  Back to their place to talk about The BezCan Project and show them the 10 minute video of the fabulous mealtime the previous Sunday in Kamuli.  Afternoon quick visit to Katharine and Phil’s (alos members of the governance group) to plan for Sunday party.
• Sunday 2 – Katharine’ birthday lunch with her family and friends.  Wonderful time where I spoke about The BezCan Project.  Instead of gifts, people were asked to donate to The BezCan Project: $1,500 was received.  Sunday night had dinner with family.
• Monday 3 – two walks to the Chris O’Brien Lifehouse: blood test at 8 am and back at 10.15 for meeting with Dr Kate.  Lunch with friend Cameron where I again shared my Ugandan experience.  This evening another part of the family is coming for dinner.

I have BezCan work to do this week as well as more social activities and, of course, the Thursday afternoon appointment with the urologist.  I will write another DHC Hope blog entry after that.

My three and a half weeks in Kamuli were so worthwhile and fruitful.  I feel that The BezCan Project can work successfully with Bezallel and Canaan Schools whether or not I remain alive.  I am finding my dying years are my living years!

Bezallel school children sang me a 'farewell' song.  Chairman Ruth gave a
short speech, I responded and Aidah led a passionate prayer.

The children waving a goodbye; the choir sang a song about writing a
letter once I am 'backa' home; a student and a teacher prayed and
I gave a short farewell speech.

Wilber, Beatrice, Rebecca and I at our final meeting at Banana Village.