Caring for someone with cancer – Kaye shares her story

This week is National Carers Week. Kaye has been caring for her husband Wayne ever since he was diagnosed with pancreatic cancer three years ago.

Cancer Council NSW’s telephone support group has been a great source of support for Kaye. To learn more about our services for carers, visit our support page caring for someone with cancer.

“It all started three years ago. I had an important meeting at work, and Wayne came to see me after to check how it all went. I noticed then that his eyes had gone quite yellow. I told him he looked a bit evil! He didn’t really want to hear that, so we just sat down for coffee and stopped talking about it.

Later in the week, I told him that he should really go see a doctor – who told Wayne immediately that he had jaundice. After tests, the diagnosis was confirmed: pancreatic cancer.

Realising that I want to be Wayne’s carer

Quite soon afterwards, I had a full-on panic attack on my way to work and realised that I wanted to be with Wayne instead. I left my job to become his full-time carer. For his first round of treatment, Wayne was offered the strongest chemo they had available. He took it for six months, which was really tough. I don’t think I could have put myself through all of that treatment – it takes such a toll on the body. But Wayne’s love for me and his positive attitude made him keep going forward.

At some point, Wayne’s body didn’t react well to chemo – he couldn’t even walk properly anymore. The doctors stopped treatment. Fortunately, it then turned out that Wayne was eligible for surgery – specifically, the Whipple procedure. After a month-long break after chemo, he underwent surgery – a big and complex procedure, but we were lucky to be looked after by a genius surgeon. Everything went well. After Whipple, Wayne turned into an instant diabetic, so that was another thing to handle.

But Wayne has always maintained an incredibly positive outlook – the doctors told us that 3 per cent of pancreatic cancer patients who go through chemotherapy survive, and he is determined to be one of them.

The devastating reality of reoccurrence

After surgery, everything was looking good, but then, almost a year ago, we received devastating news – the doctor found that the cancer had reoccurred, this time in a lymph node draining the lung. Wayne went into another second six months of chemotherapy. Fortunately, the treatment worked!

However, an additional diagnosis was thrown in the mix for us to deal with – Wayne had been carrying around hepatitis C since he was 19, after he had survived Toxic Shock Syndrome. He is currently undergoing treatment for that, while monitoring the cancer regularly. He was deemed cancer free from the chest up, but recently, his tumour markers have gone up again. It is worrying, but it might also be because of the hep c treatment.

The doctors have told Wayne many times that he “should be dead”. They keep it very real with us. Wayne has always been really good at absorbing information and rationalising it – he was a leader at the Department of Education, looking well after his staff and the IT department.

Caring for someone with cancer

The hardest thing about caring for someone so close to you is the fear – the fear of losing the one you love. There are times when I just feel like shutting the door and being done with it all, just being well again. We had big dreams for our retirement – we wanted to explore Australia with an RV, but long periods away from home are difficult with the extent of medical attention required. International travel is also a problem as securing travel insurance is an impediment, so our dreams have all come to a grinding halt, and replaced with a very different reality.

Sometimes I feel angry about the whole situation, too, especially after the cancer reoccurred, and Wayne had to go through chemotherapy again. This is both our second marriage, so we have fought hard to be able to be together – so it feels especially unfair that we are now being pulled apart. I might have even blamed Wayne for the misery that he has brought on us, in dark, irrational moments. However, I’m so grateful for each day that I get to spend with him.

Accepting this whole situation has been harder for me than it has for Wayne. He sometimes says “the die is cast”. I find that realisation much harder to swallow, so he has been my source of strength as much as I have been his – we have really leaned on each other on this incredibly difficult journey.

Caring for the carer

Caring for Wayne has made me a stronger person than I used to be. It has also made me more tolerant of other things in the world, and it has increased my gratitude for everyone around me who has been such a great support – including the Cancer Council.

Wayne has been taken care of by great doctors throughout his journey, but I really struggled emotionally, and needed additional support. I didn’t know what to do with all my emotions, so I turned to the Cancer Council for help. They have been an absolute lifeline for me. I first called 13 11 20, and then started participating in the Telephone Support Groups. Sharing my experience as a carer and hearing what other people’s challenges are has been really helpful.

Cancer Council have always been there for me in some really dark times – when I didn’t know what to do, when I panicked, when I was really depressed and anxious. They picked me up when I fell apart, and for that I’m really grateful.”