Beating bowel cancer together

Tim & Alice Kerr

Tim Kerr, 62 from County Down, was diagnosed with bowel cancer in 2012. Tim and his wife, Alice, 60, share with us how they looked after their mental health during his diagnosis and treatment.

Tim says:

We were both in the austere surroundings of the consultant’s room when the word cancer was said out loud. There’s no opportunity to process its profundity or unleash any emotion. We coined the phrase ‘car park trauma’ for the situation when you’re in the car, it’s silent and it’s your first chance to breakdown and express your feelings. We sat in the car for 15 minutes trying to come to terms with the news, but then you have to go home, process the information and tell the children.

When it came to telling people about my diagnosis, I had degrees of intimacy - like the rings of a dartboard. The inner circle is your loved ones, they had to know everything and be with you and support you, but the outer circles are people that love you in a different way, like your close friends. They can provide valuable practical and emotional support. I was in hospital for months, but I knew Alice and the children had people around them that they could turn to. That helped me a lot.

I tried to go back to work after hearing that I had bowel cancer. But I didn’t last long, I just couldn’t do it. Trying to focus on anything other than having a festering, life-threatening thing inside me was impossible. I felt like I wanted to tell my colleagues, but on the other hand I didn’t want them to know. I didn’t want the drama or the sympathy. When my boss said that I shouldn’t be at work, the best thing for me was to be at home with my family, I agreed and cleared my desk.

At the time of my first diagnosis, the children were 12, 15 and 17. We were open and honest with them from the start. They knew about every consultation, scan and chemo treatment. They were with us every step of the way. From our point of view, they were mature enough to come with us on that journey. We thought that it would’ve been a hundred times worse for them if something bad was to happen, and they hadn’t been given the full, honest picture.

Having open conversations with the children, giving them the chance to ask questions and communicate their feelings with us, allowed them to get on more readily with their lives. Part of my recovery was seeing them live their life. Trying not to let my condition cast a net around them, restraining them from achieving their own ambitions and getting involved in activities they enjoyed. Witnessing them progress and thrive gave me joy and determination.

The cancer came back on three occasions and no matter how many times you hear the words, it’s no less of a shock. However, you’re more experienced on how to deal with it. You’re calmer, and able to manage your feelings in a more coherent and rational way. The last time the cancer came back, I had a strong rapport with my surgeon and we discussed my options for treatment – quite a different approach from the formal conversation of the first time round.

I found one of the most helpful things was having a specialist nurse. Looking back I should’ve realised sooner what an incredibly valuable role she could play as a bridge between us and the consultants. When the clinicians gathered round my bed, they were often using an alien language, but the nurse helped us understand the jargon, gave us the chance to ask questions and armed us with practical information.

I built up a relationship and rapport with the nurses that provided me with care whilst I was in hospital or at home recovering. I tried to make life easy for them and went out of my way to get on with them, and I found that they returned the favour and made it easy for me too.

Everyone is different, but one of the things that I found helpful was having hope. Not blind optimism, but a belief that I would finish treatment and ‘normality’ would return. Trying to appreciate all the familiar little things that made up my happiness, helped keep my head above water. I took moments to enjoy my garden, the view from my favourite seat, my comfy slippers, and I listened voraciously to music. This never failed to lift my mood. I rarely had the energy to read a book, but listening to music was a real solace.

Alice says:

I found Tim’s diagnosis extremely difficult, it all seemed so sudden. He seemed perfectly well and then, out of the blue, we were told he had cancer in his bowel and his liver. I remember going into the garden in the middle of night and screaming. Looking back, it felt like we were stuck in a glass box, people can see you and it looks normal but everything inside has changed.

I suppose how you respond to any trauma in your life depends on the type of person you are. I’m a bit of a worrier, a planner too. I think about the ‘what ifs’, I thought Tim was going to die. He didn’t think that, he’s more of an optimistic person than I am.

The first thing we decided together was our position on telling the children. We never wanted them to come into a room and we would have to stop talking. That day, we went home and we told them everything. We wanted them to feel safe in an unsafe situation.

In today’s world if we hadn’t told them, they’ll look it up on the internet. They’ll find information from unreliable sources without any context or any understanding of the situation. They’ll come up with their own conclusions that may or may not be right. We wanted to share with them the expert information we were receiving.

You imagine that when you hear scan results, you’ll be called in to the hospital but that only happened when we told about Tim’s cancer the first time round. The other three times that the cancer had spread Tim just received a phone call. We wouldn’t know when this would be, I remember being in the supermarket when Tim phoned me to say the cancer had come back again. When scan results were due, my anxiety levels were sky high. I was constantly checking my phone, I would be jittery for a week waiting for my phone to ring.

The most important thing that I did was surround myself with people that I could talk to about what was happening, but also about other things like the weather, The Archers, the children. My sister was my biggest rock, she was by my side the whole time. She lives in England and took time away from her own family to be with me for weeks at a time. She provided immense support.

There were some friends that I couldn’t turn to, they couldn’t deal with the fact that Tim had cancer. I needed people that I could talk to about Tim’s diagnosis and treatment one minute and talk about something else the next. The people who really understood were people who have been through trauma, not necessarily cancer, but a bereavement or disability.

During Tim’s treatment I took part in an eight week mindfulness course. It transformed how I coped with his diagnosis and his future. I felt trapped, but it taught me to focus on the present, not look forward or backwards. I learnt many things, like trying to enjoy every moment, really appreciating a chat with a friend or savouring something you’re eating. I learnt to live in a more short-term way, I have no idea what is around the corner but I try not to think about it. I live for today. I’ve spent the last eight years practising this and it has changed everything for the better.

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