Permanently Tattooed

Today, Friday 27 March is a beautiful Sydney autumn day.  At 9.00am I was at the radiology department of the Chris O’Brien Lifehouse for my radiation planning session.  Radiation therapists Kim and Simona looked after me and Dr Dianne looked in.

The planning session consisted of me being placed face down on a bench.  I was manoeuvred around until Kim and Simona were satisfied I had been correctly positioned.  Markings were made in my pelvic region on each side and my lower back.  A CT scan was taken.  At the end of the session, the three markings were permanently tattooed so that I can be properly placed for each radiation session.

I start radiation on Tuesday 7 April and finish on Friday 8 May, my sixty-fifth birthday.  I think this will be a good birthday present!  This means I will not be undergoing radiation when Barbara goes to the US and gives me almost two months to fully recover before travelling to Uganda in July.

I then went to Clinic D to check on arrangements for the accompanying chemotherapy.  I wanted to be sure chemotherapy commences on Tuesday 7 April.  I was sent to the chemotherapy day treatment where Josephine took details.  She will email me the information.

Last night Barbara and I visited our new grandchild before going on to ESFNG (Every Second Friday Night Group).  Brian and Bonnie, friends from Vancouver were special guests at our gathering.  Good to have some social time with family and friends.

I confess to feeling very tired and a little apprehensive.  It has been a whirlwind five days moving from wanting treatment to radiation treatment being arranged.  At the same time, Barbara has been a very busy grandmother.  She stayed on four overnights our oldest grandchild from Friday to Monday so while the parents were with our latest grandchild at hospital.  Tuesday our other granddaughter came for her usual day with Barbara.  Thursday, our oldest grandchild came for the morning rather than most of the day with Barbara.  We are looking forward to some quieter time.

Reflection on Cooperation and Collaboration

I am so grateful for the cooperation of the Chris O’Brien Lifehouse doctors, nurses and staff that has resulted in me starting radiation from 7 April.  People arranged prompt appointments and procedures.  All were professional, caring and courteous.

I am so blessed by my family’s love.  Barbara, as you know, is a rock.  Alison rang me from the US yesterday to check that all was OK after she read my previous DHC Hope blog entry.  Our two families with children are full of love and spend a lot of time with each other; this means Elsie and Laura are friends.  It is only a couple of weeks and Will, our youngest, will be thirty!

I am so amazed at the level of cooperation and collaboration that exists in The BezCan Project:

• Within our Governance Group
• With Bezallel and Canaan Schools
• Between Bezallel and Canaan Schools
• With the McEvoys and their Church, Holy Trinity
• Enabled by the generous financial support from family and friends

The extent of collaboration experienced during my February/March trip to Kamuli, Uganda was exhilarating.  It couldn’t have been better.

In recent years I have come to the view that cooperation between human beings is one, if not the highest of human achievements.  It is wonderful to have this experience in three key areas of my life.

Time to take a break from writing blog entries.

Zapping Required

Today at 11.15am Barbara and I met with Dr Sue Carroll, Radiation Oncologist at the Chris O’Brien Lifehouse.  I was referred to Sue by Dr Chris Young, who has shown great compassion and care.  Sue provided Barbara and I with clear information and answered all our questions.

There is a choice between five days of radiation versus five days a week for five weeks plus a form of chemotherapy.  The longer treatment is more comprehensive and should result in the two tumours being significantly reduced by the radiation.  Chris and Sue’s view is that with my overall good health and dormant liver cancer this is the right option.  The short treatment tends to be used with patients that have short life expectancies but need some relief.

Tomorrow morning at 9.00am I return to the Radiology section of the Chris O’Brien Lifehouse for the planning session.  It will be a simulation of setting me up for radiation treatment.  They will work out the best way to comfortably position me for the treatment.  I will need to stay in that position for up to 15 minutes each day, five days a week, for five weeks.  Sue is hoping that I will be comfortable lying on my stomach.  They have a bench with a hole that allows the stomach to sag.  The benefit of this is that it better separates my rectum area from other areas such the bladder.  This means they can set the radiation beams to focus on the rectum with only minimal risk of radiation touching other areas.

Benefits of the treatment will be significant reduction in the two tumours, stopping the tumour near the bottom of the rectum growing into sensitive nerve areas, much less passing of debris, possibly a reduction of new cancer in the liver and giving me a more comfortable life.

The chemotherapy will be in the form of a bottle attached to my portacath for five days (Monday to Friday) in each of the five weeks.  The concurrent chemotherapy treatment doubles the effectiveness of the radiation.

My apologies to my American relatives as I am no longer able to come to the US in May/June.  While I expect to start the treatment on Monday 13 April, I will need some recovery time after those five weeks.  Barbara will still be coming.  The reason I am having treatment now is so that I can be in Uganda in July with Barbara.

The quality of health service I have received this week has been outstanding.  During last weekend I decided that I needed to do something as the debris from my back passage was not abating.  I started the ball rolling with a phone call on Monday and the healthcare service responded unbelievably fast:

• Monday, Registrar Tharani and oncologist Dr Kate Mahon agreed that I should have a flexible sigmoidoscopy and that Dr Chris Young should perform it.  Chris’s secretary Jess said first date was 22 April.  I asked if there was anything earlier and was offered 8.30am Wednesday, which I took.  The Chris O’Brien Lifehouse emailed me the forms, which I printed, completed, scanned and emailed back.
• Tuesday the Lifehouse emailed another form and Gerald the anaesthestist rang.
• Wednesday 7.00am Barbara and I arrived at the Lifehouse.  Dr Chris spoke to me before and after the procedure when he said I needed radiation.  We left at 11.00am.  Chris’s secretary Jess provided me with Dr Sue’s phone number.  Sue’s secretary, Jean, gave me a Thursday 11.00 am appointment.
• Thursday Barbara and I met with Sue who arranged for me to complete a health questionnaire with a nurse then and for a planning session at 9.00am on Friday.  I hope to start radiation and chemo by Monday 13 April.  Emma was the nurse who interviewed me for the questionnaire.  Emma was one of the nurses at the chemotherapy treatment centre at Gloucester House back in 2011 – small world!
• Friday at 9.00am I will be at the planning meeting at the radiology section of the Chris O’Brien Lifehouse.

I find it hard to imagine finding better healthcare and speed of service anywhere in the world!

So, a new part of my living with cancer journey commences.

Flexible Sigmoidoscopy

Yes, the title is correct!  This morning I had a flexi sigmoidoscopy.  Why?

This follows on from my visit with oncologist, Dr Kate Mahon on Monday 16 March.  I mentioned my discomfort with ‘jetsam and flotsam’ coming from my back passage.  Monday 23 March, one week later, it was continuing apace.  So, I rang my registrar at the Chris O’Brien Lifehouse and things accelerated from there.

By Monday night I had been to my local GP and had a referral to Prof Dr Chris Young.  He was the surgeon who performed my stoma operation in February 2014.  His PA Jessie first offered 22 April but I asked for an earlier date.  She offered today, Wednesday, 25 March.  I said ‘yes’!  I emailed scanned copies of required forms to the Chris O’Brien Lifehouse where the flexi sigmoidoscopy was to be performed.  (At 6.15 pm friends with whom I was supposed to be having dinner in the city rang – ‘where was I?’ – I had forgotten due to all my business – I caught a taxi arriving at 6.40 pm, 40 minutes late!)

Tuesday morning the Lifehouse emailed some more forms.  In the afternoon they contacted me and told me to fast and not drink liquids from midnight.  Early evening, Gerald the anaesthetist phoned for ‘sleeping’ arrangements.

Wednesday, Barbara and I walked to the Lifehouse, arriving at the required time of 7.00 am.  Every person and every stage of the process was perfection personified.  At the end I gave 10 out of 10 on the feedback form.  11.00 am we had coffee in the Lifehouse Café and Barbara drove me home.

Dr Chris spoke to me before and after the rectum inspection.  He said there was a lot of waste product from the two cancerous tumours.  One is situated just above the upper rectum and the other in the lower rectum.  I need radiation to shrink their size.

So, now I am waiting for Chris’s PA Jessie to ring me and arrange an appointment with Dr Sue Carroll.  At the lightning speed achieved so far this week, I am hoping to see Dr Sue tomorrow or Friday.

I have a feeling that dealing with these troublesome tumours might elongate the time before the cancer in the liver starts growing again.

Since being back in Australia, I have had four BezCan related meetings; with The BezCan Project Governance Group reviewed and agreed a constitution for an Australian registered charity; and been sending and receiving emails from Uganda.  I want to be able to return with Barbara to Kamuli, Uganda in July and then again myself in November.  Barbara and I are aiming to visit family in America from mid May to early June.  Two of our children and their families will also be there for five days at the end of the May.

Hence, I want to be OK health-wise.  The ‘jetsam and flotsam’ increased as a result of the high altitude and jet lag on my return trip from Uganda.  I want this problem ‘zapped’ from my event schedule when visiting the US and Uganda next.  Maybe I am being unrealistic.  However, I am very focussed on ensuring that by the end of July that The BezCan Project is so established with assisting Canaan and Bezallel Schools that it will continue even if I die in August.

My February/March visit to Kamuli was so amazing that it is beyond my words to describe well.  Everything I aimed to achieve and more was accomplished.  I am honoured to work with such wonderful friends at Bezallel and Canaan Schools.  I aim to write and release a BezCan newsletter by early April.

Welcoming a New Life

At 10.30 pm, Friday 20 March, we welcomed our third grandchild.  All are well.  Barbara and I, lots of other family members and friends during visiting hours at RPAH late this Saturday afternoon.

Thank you for your requests for more photos.