Another Health Issue – Kidneys

Friday morning, I was still assimilating the unpleasant news of my increasing liver cancer, when my oncologist, Dr Kate rang to advise a potential problem with my right kidney.  My CT scan report included information that a lymph node in my middle area is around 1 cm in size and starting to press on the tube emptying from my right kidney.  She asked me if I am feeling any pain toward my back, which I am not.

The upshot is that I now have an appointment on 6 August with a urologist.  I will probably need a stent inserted.  This will be a day surgery job under anaesthetic.

We agreed that I was still OK to leave for Uganda tonight.  I can come home earlier if needs be.

I confess that I have felt quite down with this news added.  Barbara and I went out for pizza on Friday night.  Yesterday (Saturday) I was feeling pains in my middle area – real or psychological?  Our friends Lesley and Steve came for dinner.  It was good to be able share my health news and receive some sympathetic love and care.

Today I awoke feeling better.  Today I wrote a letter to one of the Schools in Uganda.  I had procrastinated all week but now it is issued.  Shortly friends David and Lena are coming for afternoon tea.  They are doing some great things in India.  Being able to think about outward-looking matters is good.

Yes, there is some risk in my still going to Uganda as the cancer will continue to grow.  Yes, sadly, I am aware I will probably not be able to visit Uganda again this year.  I am thinking that nearly one thousand lives directly benefiting from this trip are readily worth more than one life that is continuing to deteriorate.

I finish with some happy photos from our granddaughter’s second birthday party held yesterday morning.

Rectal Cancer Decrease – Liver Cancer Increase

Over the last few days my cancer has been investigated through:

• CT scan on Friday 26 June
• Flexi sigmoidoscopy on Tuesday 30 June
• Oncologist consultation on Wednesday 1 July

The result of Dr Chris’s flexi sigmoidoscopy inspection of my rectum area shows that the radiation and accompanying chemotherapy significantly reduced the two tumours.

The CT scan shows that there are multiple new microscopic cancers in the liver with three large new cancers of 1.5, 1.7 and 2.4 cms.  Today’s (1 July) blood test shows my liver is functioning normally.  Dr Kate will be seeing me next on Monday 3 August and I will start at least six months of chemotherapy, (probably) three days a fortnight shortly after that.  Before that appointment, a tissue sample is being examined to see if it will be possible to try a new chemotherapy that might give better results.  As is normal for a cancer of my type, I now need to return to chemotherapy more quickly.

Naturally, Barbara and I are feeling a bit down after today’s trip to the oncologist.  It means being tied into regular rounds of chemotherapy from August until at least February.  Planned holidays now have to be cancelled or rearranged in shortened bursts.

Please remember that I am experiencing a much healthier life than normal for someone with the extent of liver cancer detected in March 2011.  At that time the statistical life timeframe was one to five years.  More than four years later I am still enjoying a good quality of life.

I confess I felt a bit invincible lately, thinking that I had many more years to live.  Today is a sobering reminder that this might not be so.

Barbara and I are still departing for Uganda this Sunday: Barbara will be with me for ten days and I will be in Uganda for over three weeks.  I am glad that I have been planning what needs to be done during this visit.  I was aiming to return to Uganda from late October to mid November.  This is now very unlikely.  So, I am faced with a bigger challenge of how well matters can be addressed face-to-face and then successfully proceed.

This is blacker blog entry.  I want to finish by celebrating the privilege of being alive and enjoying several events recently:

• The BezCan Project Governance Group meeting
• a family birthday
• friends 18th birthday and silver wedding anniversary
• annual Christmas in July (this year in late June)
• watching our two granddaughters and grandson growing up – the girls are now two years old – both love their parents, each other and wider family – they love learning and are so full of life – our grandson is full of smiles, happy and contented – can it get much better than this!

Life After Radiation

My radiation treatment finished three weeks ago.  Today I saw Dr Susan Carroll to check how things have settled down.  They have.  I am now only awaking once or twice a night and have even slept for as long as six hours.  All the discomforts relating to radiation have gone.

The benefits of the radiation will not be known until Dr Chris Young performs a flexi sigmoidoscopy on 30 June, after which I will write my next blog entry.

I have been home alone for almost two weeks while Barbara has been visiting family in her hometown of Fredonia, New York State.  Half the Heyco family visited too.  At the same time, part of our family was in Asia.  Only six of us remained in Australia.  Unusual for me to be one of those in Australia.  I am glad I decided not to go with Barbara to the US.  A quiet time at home has been good for recuperation.

Travelling Through Radiation

Today I had my 20th of 24 radiation treatments.  I am 5/6ths of the way through!  Today I had the fifth and final bottle of chemotherapy attached through my portacath – I have a bottle of chemo each of the last five weeks.  Today‘s treatments were like lightning:

• Arrived at Chemo Day Therapy at 1.55 for 2.00pm appointment – was called at 2.10 and bottle attached by 2.30 – fastest ever; and
• Arrived at Radiation Oncology at 2.40 for 3.15 appointment – was called at 2.50 and finished by 3.10pm – I was home by 3.40pm – WOW!

This followed Friday afternoon where I experienced the fastest ever detachment of chemotherapy bottle.  Hope the rest of this week is like this.

Travelling By Car

Since I started chemo back in 2011 I have prided myself on walking to and from treatments, including walking home after my stoma operation.  Two weeks ago I had to resort to driving.  While I am physically able to walk, my feeling of needing a toilet meant I needed to drive.  It is only a 15 minute walk but I felt I could not make that distance comfortably.  As well, Sydney had enormous amounts of rain!  Parking is available at the Chris O’Brien Lifehouse and I receive free parking for radiation treatment.

Travelling Uncomfortably

The medications I mentioned in my last blog have helped but I still experience discomfort.  Additionally, I have had a heavy cold these past two weeks.  The coughing adds to the discomfort, especially at night.  I have used a heated wheat bag to provide relief across my stomach.

While our daughter-in-law is getting up one to three times each night to feed her six week old son, I am getting up three to seven times each night to use the toilet.  The gaps between visits can be as short as half an hour and occasionally as long as 2.5 hours.  I am getting enough sleep.

Barbara has looked after me so well during this treatment, making life much more comfortable.

This last weekend my daughters-in-law and Barbara were telling me that I only had one more week of treatment.  I wanted them to be more sympathetic!  After the treatment stops at the end of this week, the discomfort is likely to continue for up to another two weeks – must be realistic.

When I am at radiation oncology I am reminded of how fortunate I am.  Some patients, like me, come themselves; some come with a helper; others are in wheel chairs; and some are on beds.

After the radiation side effects disappear I expect to be walking to and from the Chris O’Brien Lifehouse again.

Travelling Into the Future

Barbara and I saw Doctor Kate Mahon this morning at the Chris O'Brien Lifehouse.  She is very happy with how well I am handling the radiation and chemotherapy.

Today's blood test shows the cancer marker is at 1.9.  It has been running at 2.5 to 3.0.  These are all in the normal range.   I think it is good to see a relatively large reduction in the cancer marker.  Perhaps the radiation and chemotherapy's effect on the cancer tumours in the rectum have resulted in this reduction.

Dr Kate commented that I do not have that much cancer in my liver – first time we have heard it expressed like this.  My next appointment with her is 10.00 am Monday 29 June.

Before seeing Dr Kate again, she asked me to arrange to see Doctor Chris Young for another Flexible Sigmoidoscopy inspection of my rectum.  This is necessary to assess the benefit of the radiation.   MRI and CT scans do not provide enough information.  I hope to arrange for this by the end of this week.  I will also have a CT scan before seeing Dr Kate.

It is wonderful to receive such an upbeat assessment.

Arriving at My 65th Birthday

This Friday, 8 May, the last day of my radiation treatment, I turn 65 – the official retirement age – the official age of being a senior citizen.  Our family is celebrating with dinner at Pizza Da Noi, a few minutes walk from home with a conveniently located toilet.

So far on the Friday evenings at the end of a week of radiation and chemo I have felt at a low ebb.  I am hoping to be OK this Friday to enjoy celebrating this milestone on the actual day.

I do confess that as I approached turning 60 years of age, I expected to still be feeling relatively young turning 65.  While still 60, I was diagnosed with cancer.  Now I feel old before my time.

Travelling Positively

Meanwhile, Dr Kate’s upbeat assessment is very encouraging.  Last Tuesday Dr Sue Carroll, the radiation oncologist said that radiation removes such cancerous tumours in 20% of cases.  Dr Chris Young will assess the results and options, including an operation to remove my rectum.

If the next CT scan shows the liver cancer remains dormant and there is a really good result from the radiation of the tumours, then I think those of you who have been praying for healing can say a level of healing has occurred.  Certainly, the expert medical treatment has been able to provide a quality of life while suffering from a chronic health problem.  Quality of life was Dr Lisa Horvath’s promise four years ago!

Half Way Through Radiation

Today I completed 12 of the 24 radiation sessions.  They are scheduled at 3.15 pm each weekday.  My energy levels are fine but I have succumbed to several typical side effects.  These cause me to spend a lot of time on the toilet.  In fact, I want to remain close to a bathroom all the time.

Each weak I see a radiation oncologist to check on my situation.  Yesterday I saw Dr Sue and her registrar Dr Sandy.  They gave me medicines to alleviate the symptoms.  I have a alkaline powder to mix with water and drink that offsets radiation’s acidic affect on my urine.  This reduces the stinging sensation.  I have been given a foam gel to inject into my rectum that reduces inflammation.  And I have been given a salve cream mixed with an anaethetising agent to relieve stinging around my anus.  These have made me much more comfortable today.

The radiation therapists that operate the large treatment machine are all very kind, friendly and professional.  They respect you as a human being and patient.  They are willing to answer questions.

The chemotherapy is a liquid contained in a bottle.  Monday before radiation I go to day therapy to have the chemo bottle attached through my portacath.  Friday I return after radiation to be ‘de-accessed’ – the attachment is removed.  Initially, my chemo appointments were not tied in with the radiation.  This was because day therapy was not informed of the reason for the chemo.  Once I let them know that the chemo supported the radiation treatments, my appointments were rescheduled.

I forgot that these things take time and usually run late.  I am now in the swing of it.  With Sydney’s severe wet and windy weather the last two days, I have been driving to my appointments rather than walking.

Yes, I have felt sorry for myself at times.  It is good to have been given medicines that have made me more comfortable.  I see patients in wheel chairs and on beds receiving radiation and realise I am in a much better situation.  I see young people needing treatment, which I find the hardest.

And this week I learned that two of my friends at Bezallel School are having very difficult times.  One is still recovering from serious injuries suffered in a motorbike accident (commonly used for public transport).  My other friend has significant kidney problems and is bedridden.  Here in Australia our medical services would be providing quality health care but there in Uganda my friend’s illness might not even be properly diagnosed.  This is yet another reminder of the great inequity that exists in our world.  I am very grateful for the quality of healthcare I receive.