This story is about my husband Michael, the patient, and me, his carer. It outlines our trials and tribulations whilst highlighting the determination, dedication, and love during this incredible journey.
We were in Hong Kong with our friends when Michael first showed symptoms. At the time, we thought the different types of food in that country were causing his stomach pains, diarrhoea, and vomiting. However, I called Australia after a number of days, as there was no improvement, and booked an appointment for Michael to see a gastroenterologist as soon as we returned.
Because it was close to Christmas, Michael was booked in for his first ever colonoscopy in January. That fateful day brought us the news we were dreading. As Michael sat outside the x-ray department and I entered he told me, “I have colon cancer”.
My first response was, “Well this will be interesting. You are the worst patient and I am the worst nurse”.
We laughed, but little did we know what lay ahead. Michael was diagnosed with Stage 4 bowel cancer and we saw a specialist just 2 days after his colonoscopy.
The doctor advised us that due to the size of the cancer the operation required was way out of his scope, but he knew a great doctor who would be able to assist. We met perhaps the most amazing doctor I have ever known, just one week later.
The tests began with PET scans (the first of many). It was confirmed the cancer was large and radiation and chemotherapy would be required to shrink it before any operation could take place.
Radiation started and at first it was all good, but as the treatment progressed Michael became quite sick and was admitted to hospital to build him up before the operation could take place.
I went and saw the specialist we were seeing whilst Michael was in hospital, to ask him what would happen if Michael couldn’t have the operation. His answer devasted me as he advised me Michael possibly only had another 6 months without the operation.
Six months after his diagnosis Michael had a full pelvic exenteration. It was perhaps the longest day of my life. The operation took some sixteen and a half hours but everyone in the team was confident that all had gone well. Our long journey really began. Michael spent time in hospital under the care of the doctor and his team. Every day they monitored Michael’s progress and eventually we could go home but had to return to Sydney twice weekly for one of his wounds to be treated.
Although we lived in Nowra, we were willing to undertake that travel just so we could be at home together. Michael had two stomas and two bags. He handled the situation with a determination that all would be well. More radiation followed and many more hospital visits due to skin grafts and other complications.
At one stage he had Sepsis and I can’t tell you how I felt when the doctor asked me if I wanted Michael revived should that situation arise. I felt sick, but once again Michael survived due to the care he received. At this stage I feel I should say that the role of a carer is something I was not expecting. Many nights I spent crying as I saw the man I love in pain.
Michael was given a drug which caused him to hallucinate, something I was not expecting, but this story is not about me it is about bowel cancer and the devasting affect it has on everyone involved.
One day I will tell my story as a carer to hopefully help others who find themselves in this position. Michael underwent more radiation and chemotherapy. He lost weight and eventually the hair, of which he was so proud, started to fall out, which resulted in him having his head shaved.
The cancer centre provided him with wonderful care, and he built up a great rapport with the staff whilst undergoing his radiation and chemotherapy treatments. Always turning up with a positive attitude and a joke or two for the staff. We thought we were on top of things but something totally unexpected occurred as lumps started to appear on his legs. The pain was excruciating and added to all the other pain Michael was struggling with.
We called a palliative care doctor to put a plan in place. Things were looking grim and the man I loved was fading away. Michael was transported back to Sydney for more care. We had planned to spend Christmas in Sydney with our daughters and their families. We leased a house, but Michael was not well enough to leave hospital. We visited him and spent time with him on Christmas day and that night as well, taking the grandchildren and his great grandchildren to see him as often as possible. It was a sad time but a happy time in a strange way.
Many of his friends had visited him and said their goodbyes. Just after Christmas Michael slowly went into sleeping more and more and eventually, he was not responding to us except by squeezing my hand each time he needed pain relief.
On 6 January, just four days short of the two years after his diagnosis, Michael passed away at the age of 76. This truly was the worst day of my life. My message is that although our story didn’t have the end we would have liked, it created awareness among our family and friends.
Michael encouraged all his friends to have colonoscopies with two coming back with a positive result. It also reiterated the importance of friends. Our friends were amazing, offering love and support throughout our whole journey and at times I don’t think we could have been so positive without their support. We were lucky to be surrounded with not only great friends but with wonderful doctors and nurses who treated Michael and me with so much compassion.
I hope our story encourages all who read it to have a greater awareness of bowel cancer.