Brent C's bowel cancer story (wife diagnosed age 56, NSW)

Prior to her diagnosis in 2006, my wife’s concerns about her health were dismissed as a trivial condition because her only symptoms were occasional and very slight rectal bleeding.

Each time she raised her concerns with her GP, the GP thought the bleeding was related to other things such as beetroot (we ate a lot of vegetables) or haemorrhoids. However after insisting, her GP finally ordered a colonoscopy which showed my wife had late stage bowel cancer, with metastases in the liver and lungs (stage 4).

Once the cancer was detected, my wife underwent surgery, removing the site of the tumour and the surrounding portions of the bowel. Without further treatment she was given 6 months to live. She was then given chemotherapy off and on for five years, as well as radiotherapy in the last year when the tumours spread elsewhere. The treatments would change according to how she was responding to a particular treatment, or if her body started to reject the treatment.

When my wife was first diagnosed, we really had to consider how to break it to our adult children and more importantly, to our grandchildren. After some research we sat down with our children, told them what we knew, and left it up to them to tell their little ones when they felt the timing was right, and in the way they felt it would be best handled.

We also decided to refrain from using any military style language when discussing cancer. Therefore we did not use the words like ‘beating’, ‘battling’ or ‘fighting’ cancer. We decided we were ‘living’ with cancer – we wanted to adopt a total lifestyle that would allow us to get on with life and that would hopefully lead to healing. It meant we planned and did fun things, just as we had before the disease.

Twelve months after my wife was diagnosed with cancer, I was diagnosed with non-Hodgkin’s lymphoma. At this point in my life I decided to retire as it was getting to be too much, caring for her and working. From then on we cared for one another. At one stage we didn’t know who was going to be the first to go, as we were both unwell at times. In the end, my wife died at home in 2011 and I am currently in remission.

Having gone through cancer myself and having cared for my wife during her cancer treatment, I believe a lot more education needs to be undertaken to warn people of cancer (and other chronic diseases) and to highlight lifestyles that may help prevent them. Upon diagnosis patients and carers need advice about the disease and its progression, and holistic approaches for treatment. I realise it can be a hard line to tread between being hopeful and pessimistic – but I feel knowledge helps me understand both views and pick the best path. In regards to the end-of-life support services we received, we both felt that the quality of care seemed to vary from hospital to hospital and nurse to nurse, and there needed to be a better palliative care process in many different ways.

We were both disappointed that our GPs were not strong advocates for Age Specific Testing for any conditions, let alone bowel cancer. We believed that if she had been tested at the age of 50, as recommended by the medical guidelines, the cancer would have been picked up and caught in time. I believe every GP should be doing this and pressing for specific tests depending on the age of their patient, whether there are symptoms or not.

If my wife were here today, I’m sure she would advise others to do their research and look at all aspects of your lifestyle and complementary therapies, as well as your medical treatments. Understanding the impact of your behaviours and your lifestyle can really help with the cancer healing process. For us this meant that we had to seek out and coordinate all the various treatments and advice, because there is no one medical person able to do it.

For other carers, I believe that caring is a tremendously rewarding but difficult and draining time. I’d suggest that carers don’t isolate themselves from others and try to do it all themselves. This needs to be a total team effort – with your partner, family, friends, medical team, and allied health team supporting each other. Don’t be afraid to share the load. And remember to look after yourself, because the patient suffers if the prime carer(s) are also suffering. A carer needs support too.

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