Sue S in memory of her mother Elaine

My name is Sue, and my mum Elaine fought bowel cancer for 28 years.

She first got bowel cancer at the age of 56 and went into hospital thinking it was haemorrhoids.

While in hospital the surgeon decided to do a colonoscopy so I drove her to another hospital to have this done, he came out and told me she had a large tumour, and he would operate next day.

She had the operation and had a large part of her bowel removed.

She had yearly colonoscopies for the next 12 years and was told it was ‘all clear‘.

I was with her at that appointment and had a gut feeling as she was having bowel changes, so we asked for just one more.

It was back, this time in her rectum.

She was sent to a bigger hospital and had the tumour removed through her bottom.

She was due to have radiation but after a blood test found out she had CLL as well (chronic lymphatic leaukaemia) and sadly she was so overwhelmed by the news that she suffered a major breakdown.

My sister, myself and our two brothers all supported her daily through this, she was in a facility out of our town, and we visited her each day for the four months she remained there and had to have shock treatment.

The cancer was not able to be treated anymore due to her condition but still it was another six years before it returned, again in her rectum.

Her only option was surgery but not before she had a port fitted for a chemo bag, she carried around her waist for eight weeks, hopefully to shrink the tumour along with daily radiation as well.

My brothers, sister and I would take her to have this done each day and weekly to have the chemo refilled, batteries changed and port flushes. Her bottom was so red and sore from the radiation.

She went into hospital at the start of January and was told she would need a bag and would be there a week.

Everything went wrong; the radiation hadn’t worked and instead made her bowel like tissue paper which continually leaked inside.

She had a few emergency operations and was incubated.

She had a low chance of survival and remained there until the day after Mother’s Day in May.

She could not have any food and could not be fed through her stomach so just had vitamin injections.

She had abscesses which leaked, and we went through many nighties each day as she was so proud and did not want to wear a hospital gown anymore.

She also had a vac pump with her wound open, and this took hours to change every few days.

One of us would be there for this so she wouldn’t get too upset. She could not accept the bag and when she came home, we got district nurses to change it until she accepted it, which took a year.

They were wonderful and patient. One day she just told them not to come back, that she was ready to do it herself.

We had great support from the stoma nurses at the hospital where she had her operations, and I would take her for a checkup to them every few months.

Meanwhile her CLL wasn’t needing treatment which surprised her oncologist, so she started donating blood to help research. The cancer returned four years ago, this time could not be operated on but had regular chemo for over a year.

My dad who had become unwell himself with oxygen and a catheter, passed away in 2014.

Mum was looking after him whilst having her chemo.

She could not cope without him after he passed away, she was still having chemo but didn’t seem to care anymore.

She had another breakdown and was another four months in a facility again with shock treatment.

After this we all decided no more treatment but still had regular blood tests and visits to her wonderful oncologist.

She went into aged care two years ago as she could no longer cope and was lonely.

She continued to change her own bag for a while, then needed help from the care staff. She still donated blood for research each time she had a blood test.

Sadly, she passed away September 2018 at the age of 84. She died not from the cancer but from a strangulated hernia behind her stoma.

She was so brave for so many years, and we all miss her terribly.

We all have regular colonoscopies and do the bowel screening tests because of everything she went through.

If mum hadn’t had her regular colonoscopies she would never have survived as long as she did, so my advice is to do the yearly screenings and not think it won’t happen to you.

This is a photo of mum and dad in 2013, dad passed away 2014 and a recent one of mum with her granddaughter Tiarni a few months before she passed away.

Thank you for allowing me to tell my story

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2026 Update:

About six months after my mum passed away, my brother was told he had terminal kidney cancer, he had a tumour and a few more in his liver.

He had kidney cancer in his 30’s and had his kidney removed.

30 years later the cancer returned where his kidney had been.

After visits to doctors and oncologists he was told he could start immunotherapy as it had just been approved the week before he was diagnosed.

The special part about this is that mum had been donating her blood for research for immunotherapy right up until her death.

So, in some small way we feel that my mum has helped my brother to survive this long due to her contribution.

As I write this, he has had approx. 108 treatments and has been told he is very lucky to have been able to tolerate the treatment for so long.

He has the treatment every fortnight in Sydney.

Research is so important and thankfully my brother got to use the immunotherapy.

He has bad days and good days, but it has changed he and his wife’s life dramatically.

Especially since she also suffered a brain aneurysm a few years ago and was very lucky to get to the hospital where she had immediate surgery.

If we could say one thing to our dear mum if she were still here, it would be ’thank you mum for helping with the research‘

I hope that by sharing our story it helps someone out there and also encourages someone to contribute to research as you never know who will need and benefit from this.

Who would have ever thought it would be my mum’s own son, we think it’s amazing!