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 hemorrhoids. While in hospital the surgeon decide 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 leaukemia) and sadly she was so overwhelmed by the news that she sufferred a major breakdown. My sister, myself and out 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 4 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 6 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 8 weeks, hopefully to shrink the tumour along with daily radiation as well. My brothers, sister and myself 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 4 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 continued having chemo but didn't seem to care anymore. She had another breakdown and was another 4 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 2 years ago as she could no longer cope and was lonely. She continued to change her own bag for awhile, 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 stangulated 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.