Downs and Ups!

So far, this has been one of the most physically difficult years of my life!  This week there seems to be light at the end of the tunnel.

Downs and Ups

DOWNS:

• Severe diarrhoea being late onset reaction to my first round of chemotherapy (Wednesday March 19 to Friday March 21).  Bah Bah Black Sheep had three bags full.  I had 9 colostomy bags full on Wednesday, 6 on Thursday and 4 on Friday morning.  (I am very glad I am using colostomy bags that can be emptied, otherwise I would have had to put on a new bag each time.)  Late Friday morning I was at Emergency, Royal Prince Alfred Hospital as advised by Dr Lisa.  My situation could have been life threatening but the two doctors told me how well I looked.  I did not feel well!  The Emergency service was excellent.
• With a colostomy bag I expected sitting on the toilet to be a thing of the past but it is not.  I have discharge from the two cancerous polyps still in my rectum!
• I was probably at my lowest point last weekend (March 22 and 23).  I felt very lethargic and listless.  I slept Saturday afternoon with the aim of getting to Phil’s 60th birthday party but by 6 pm I just could not – too hard to face talking with people.  In fact it is some time since I have been out at night.  Sunday I walked around the block, talked a neighbour explaining how I found the walk hard.

UPS

• Barbara and I enjoyed an uplifting visit from Alison and Chris – two long time friends, both doctors – they provided useful insights, humour and non-judgmental love (Monday 17 March).
• I awoke Monday morning March 24 feeling more normal.  Barbara and I saw Dr Lisa who told us that my liver function had improved from the first round of chemotherapy – amazing, wonderful!  I comfortably walked to and from the hospital twice – first for blood test then to see Dr Lisa.  (What a change from the day before.)
• Have felt pretty good through this second round of chemotherapy.  I have more spark, even humming tunes some of the time.  Maybe I have turned a corner?

Dr Lisa said I had done a good job.  I said I cannot do anything but the chemo had done the work.  You will be glad to know that my experience at the chemotherapy day clinic was better this time.  On Monday Barbara and I met with Sally, a patient liaison person to give our feedback, which was well received.  Only had to wait an hour on Tuesday and was served straight away on Thursday.  Both nurses were excellent.

Drugs

OFF

• Since my operation over five weeks ago I have been taking Panadol and Endone (morphine related).  I was taking Endone each night and sometimes during the day.  I would take two Panadol and an Endone at 7pm and enjoy the euphoric feeling around 8pm.  It settled me for the night.  I was becoming concerned that I needed it regularly but last week the need disappeared.  I stopped taking them Tuesday March 18.

ON

• Now I am taking four different drugs to deal with diarrhoea and nausea – Nexium and a probiotic tablet daily and anti nausea and anti diarrhoea tablets as needed.
• My three chemotherapies are – Irinotecan, Leucovorin and Fluorouracil.

Food

Indirectly and directly a number of you commented on my eating ham and cheese croissants and toasted sandwiches.  I have found my food intake has changed significantly this year.  Usually I am an egg man for breakfast but now I am having muesli with fruit and yoghurt.  I am off coffee and into caramel milkshakes – this is back to my childhood when milkshakes cost ten cents not $5.  Yesterday, for the first time for a while, I enjoyed some soft cheese.  Maybe I am returning to normal?

Family

Our family celebrated one of our on Saturday March 29, here at Club 55.  So, I this update finishes with family photos for your enjoyment!

Family and friends

Will's pizza oven, where the excellent pizzas were cooked!

Grandma and Granddad with with our granddaughters

The delicious ice cream birthday cake

Closing Our Business

On January 31, 1991 we celebrated our fifteenth wedding anniversary, our youngest started school and I left EY (Ernst & Young).  On 1 February we began our own business, David Hey-Cunningham & Associates Pty Limited.  As we drove looking for office furniture, I remember saying to Barbara that I felt uneasy about having left a secure wage behind and starting our own business.

Now, 23 years later, we have decided to close the business due to my health situation.  I feel that with a statistical maximum of three years left, I would like to have more free time.  My outward focus will be The BezCan Project.  We have already taken action, cancelling insurance policies, our business telephone line (calls diverted to our domestic line for three months) and now officially informing you.

We have much to be thankful for as our business has enabled us to invest in the future as well as live day-to-day.  I have worked extensively overseas with many fantastic people and clients.  In particular, there are three people I want to thank:

• John Peacock who was a champion from the beginning: Terrapinn was a major client on three lengthy associations over the years much of it was international;
• Michael Strickland who was involved in legal continuing education and used my services and promoted some of my own seminars; and
• Ken Everett who has been my business mentor, providing invaluable help in the first few years as we struggled to get going.

There have been lots of clients: law firms, governments, not for profits and commercial.  Two professional associations stand out: the former Securities Institute of Australia and the Australian Institute of Company Directors.  Both institutions ran or run excellent education programs for their members and work in close collaboration with the consultants and trainers they use.  I have many friends from both institutions.  In recent years, Company Directors has been my main client and I will miss working with them greatly.

Lunching with Akiko and Ken, Crows Nest (Sydney suburb), August 2011

Chemotherapy Again!

I have completed my first round of chemotherapy after a one year 10 month break.  I found it hard to return to it.  In 2013 most of my year I lived as though no cancer existed.  Now it is back with a vengeance.  I confess to feeling very sorry for myself.  My head is consumed with feeling unwell, uneasy and uncomfortable.

Monday morning Barbara and I walked to the hospital and talked with Dr Lisa Horvath, my oncologist.  I then had a blood test, which delayed the start of the chemotherapy from 9.30 to 12.30.  We went to the café until 10.30 but I became uncomfortable sitting upright in the waiting room.  At noon I approached reception and was taken to a bed.  It was a relief to lie down.

The chemotherapy now takes place on the first floor of the Chris O’Brien Lifehouse building, a magnificent new state of the art building.  However, I think the new procedures are inferior and unfriendly compared with the old approach.  You check in with one of the clerks.  Previously you did this but you also went and let the nurses know you had arrived.  You cannot do this now as there is an electronic door barring the way.  You are given no indication as to when you will be attended to – very annoying.

You can ask the clerk when you will be attended to.  The clerk then goes through the electronically locked doors and comes back with an impersonal answer.  And it is a very noisy process!  We are lined up on seats in a waiting are watching television.  When the clerk goes to find out when you will be seen, doors slam!  First, the door to the clerks’ area slams ‘bang’ and then the electronic door slams ‘bang’ on entry and ‘bang’ again on return.  Lastly, the door to the clerks area ‘bangs’ again.  Noise, noise, noise, which is burdensome when you feel unwell.

It was wonderful to be in the bed in a quiet area.  The nurse looked after me well and Barbara and I arrived home around 3.30 pm.  I returned home with the two-day bottle chemotherapy inserted.

During the two days I felt some nausea and took tablets to relieve it.  Indeed, I am taking more tablets to make me feel comfortable than I ever have in my life.  I am taking one or two Endones a day.  It is not something I like doing but I am finding it necessary.

Wednesday, middle of the day, I walked to the Lifehouse by myself to have the finished chemo bottle removed.  I had to wait over an hour, put up with banging doors again and then had a trainee remove the bottle under supervision.  Again I felt sorry for myself.  I found it hard to walk home and took another anti nausea tablet, which provided some relief.

Late afternoon, I ran into unexpected trouble with my colostomy bag for the first time and felt very angry and upset.  Barbara helped this poor, self-pitying, bleating man.  I need to shift how I feel about things.  Back in 2011 I felt more up but this time I have been beaten down by the debilitation that has taken place before starting the chemotherapy.

Today, Thursday March 13 I have been working quite a bit on the computer, mainly handling BezCan Project matters.  I am glad to have this outward focus where my concentration is on assisting in the education of children in two primary schools in Kamuli, Uganda.  I have felt queasy still, which is like back in 2011 when I felt queasiest on the day after the chemo.  Barbara and I went out for lunch and I had a nap when we returned.

My life is now in the hands of the chemotherapy effectiveness.  The liver is not working properly.  Our hope is that the chemo reduces the cancer in the liver and enables it to operate properly again.  If this occurs, then, statistically, I could have up to three more years of life.  What I want is quality of life like I had in 2012 and 2013.  I do not want to simply exist day to day.  So, I am hoping things will be significantly improved within a few months.

Hospital Reprise – Serious Setback

What a difference 30 hours makes.  Mid Saturday (February 22) I comfortably walked home from Royal Prince Alfred Hospital (RPAH).  5.30 pm Sunday I was taken by ambulance from home to RPAH Emergency.  This blog entry is about this deterioration due to a short sharp sneeze and its aftermath plus seeing my oncologist on Monday March 3 to look at beginning chemotherapy.  The last week has been hard going – a big contrast to my previous blog entry.

I felt really good as I walked home with Barbara on Saturday (February 22).  A friend rang soon after I arrived home and I felt very up while talking with her.  However, by late afternoon I was feeling “OK”.  Had a good sleep and 7.30 Sunday morning walked down to the harbour.  Had breakfast at the Black Wattle Bay Café.  I then walked home by the easiest route.  At 2 pm friends arrived for afternoon tea.  Barbara and I had arranged for more friends to come around at 4.30 pm, such was our optimism.

Barbara and I with our 2pm round of friends

But at 3.30 pm I had a short sharp sneeze.  The pain flashed across my abdomen.  I took a milk drink to the front room, sat down in the rocker recliner seat.  Next thing I know is Barbara and our son are talking to me.  I was looking at them, not responding.  I had fainted.  We reclined the chair horizontal but that was too uncomfortable.  I crawled from the chair and lay on my right side on the floor.  It was comfortable but I could not get my mind to get me up from the floor – I was a ‘beached whale’!

Will called Dr Sean Griffin (gastroenterologist), as I could not remember where I had Dr Chris Young’s (colorectal surgeon) mobile (cell) number.  Sean advised we call for an ambulance.  Due to my non-urgent situation, it was an hour before the ambulance man arrived on a motorbike.  He talked with me and established I needed an ambulance, which soon arrived.

Our front steps are steep.  So it was decided I would walk to the ambulance.  The three ambulance people helped me sit up and then stand.  I was able to walk unassisted to the ambulance.  I was feeling faint as I climbed into the ambulance and was very glad to lie down again.  All my vitals were checked as we drove the short distance to the hospital.

At RPAH I was quickly admitted and allocated a bed and received immediate attention.  They admitted me, which was relatively easy as my records were right up to date.  They had to ask me if I was coming in as a public or private patient.  It is to the public hospital’s advantage if I use my private health fund membership, which I did.  Once this was done, they then got me the pain relief I had requested.  I think the system needs improving if you cannot be given pain relief until they know how you are admitted.  Surely, they can tag the medicine usage so that it can be entered as public or privately provided later.

In the early evening I fainted again while lying in a reclining position in my bed.  Barbara and Will got me some immediate attention.  They put me on a drip.  They had already decided that I would not be fed or given drinks as they thought I would need an operation.  The drip gave me much needed liquid.

After a few hours our son let his siblings and my brother know what happened.  Barbara and I were so glad to have our son as a calm and steady help.  Barbara stayed and came with me when I was transferred to 9 West 1 colorectal ward, bed 10 at midnight – seven hours in emergency and back to my previous ward but in a different bed.

In emergency they monitored my vitals, did an ECG and CT scan.  They did put in a fluid drip after a while.  Barbara and I were very glad we had been trained in use of the colostomy bag.  Doctors and staff did not seem to know much about it.  My bowels were active and it needed emptying, twice.  We could manage this ourselves from our supplies we had brought with us.

There are less than 100,000 Australians using colostomy bags and only about 3 million in the world.  So, we are a small minority in 7 billion people.  Our family has an unusual statistic in that one of my cousins also has a colostomy bag – 2 of 7 cousins!

The quality of the emergency care was mixed.  I would have sacked two of the day shift nurses on the spot: one wore only one glove when taking blood and the other was arrogant.  Doctors were generally good.  The person who did the CT scan was fantastic, replacing the sheets I had unwittingly wet.  The night nursing crew seemed much more professional than the evening crew.

I was glad to arrive in the colorectal ward.  I was in a part of the hospital that knew the drill for my condition.  I was given two more Panadol and Endone (equivalent of morphine) and slept comfortably.  Monday morning the doctors, including Dr Chris Young advised I had torn some of my stomach lining, the stoma was OK and that I would not need an operation.  I was allowed to eat and drink.  I would be kept for observation and allowed home when my blood and other signs were more normal.  I was discharged Tuesday 25 February, feeling worse than when I left the previous Saturday.  I am still feeling uncomfortable.  I cannot walk as easily.  I need to walk to help the heeling. 

As you know, it is not just me who is under strain but Barbara too.  We both need good night sleeps.  Thus, I have moved to the back bedroom, which is on the same level as the bathroom.  This has helped both of us.

Since coming home I have had a mixture of OK to bad times.  Friday 28 I hardly did a thing due to severe discomfort.  Wednesday I caught up on emails and Facebook and arranged some appointments.  Thursday, Barbara and I walked to the Colostomy Association to collect my supplies.  It is next door to Stanmore McDonalds where we had coffee and a toasted ham, cheese and tomato sandwich before walking home.

We worked out that I need pain relief during the day as well as at night.  Saturday, I went to my GP for an Endone script, then the pharmacy and had a coffee with a toasted ham, cheese and tomato croissant.  Barbara looked after Laura while Pete had lunch with a friend who is getting married soon.  Sunday started well with Barbara and I walking out to coffee with some sourdough toast but by the time the family was here for an early dinner I was feeling low.  One of our children was concerned that my liver was not functioning well and that I might be jaundiced and advised me on things to ask Dr Lisa.

Monday March 3, Barbara and I went to a 9.45 am appointment with Dr Lisa Horvath.  Lisa was thorough with her questions about how I am.  I asked her my list of questions.  Lisa said I am doing very well for what has happened to me in the last month or so.  Lisa is scheduling me to start chemotherapy next week.  I will provide a blog update after my first round of chemotherapy.  It is 1 year, 10 months since I last had chemo.

Meanwhile, Barbara and I are going to Port Stephens for a few days holiday.  One of our plans is to go to WorlMark (our holiday accommodation timeshare) in between some of the chemotherapy treatments.

How do I feel with this setback?  My reality check has been much greater than I anticipated.  I am wondering if all that is happening and ahead in treatment terms is worth it.  We are making significant decisions that we will let you know over the next few weeks.  I was comforted by Dr Lisa saying that my three days chemotherapy each fortnight treatment will be less demanding and less likely to cause nausea than the previous treatment.  This is good news considering how vulnerable I feel at the moment.

Finally, I would like to thank you all for your love and support you have provided in dozens of emails.  With how I have been feeling, this has been an excellent way of being in touch.  So, feel free to keep the email or Facebook messages coming.