The Cancer Roller Coaster: How to manage the emotional and mental impact

By Juliette Chan

Two days after celebrating her 50th birthday, Juliette Chan had an unexpected birthday present: bowel cancer. 

Luckily, they caught it early, but once the treatment was over, the psychological side-effects surfaced. For many months, Juliette was adrift and felt lost. It seemed that everything in her life was up for review and she

• Language: English
• Publisher: Librotas
• Release date: Feb 4, 2019
• ISBN: 9781916489479

Juliette Chan

Juliette Chan is an engaging speaker and trainer who helps people deal with major loss and life-changing events. She has helped over 400 grievers and is an Advanced Grief Recovery Method Specialist®. Following her personal experience of cancer in 2016, Juliette drew on her expertise and experience of handling grief to cope with the psychological aftermath. She now specialises in supporting men and women through the emotional and mental impact of their cancer experience so that they can regain peace of mind, develop clarity and find their own unique way forward. She takes pride in offering clients a safe space to show up, to have difficult conversations and to practise vulnerability and courage. Juliette is the founder of Altered Dawn CIC, a not-for-profit company based in the UK that serves individual clients and businesses in the UK and worldwide.

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INTRODUCTION

We cannot direct the wind but we can adjust the sails.

– Author Unknown

‘D on’t underestimate the psychological impact,’ Helen, my cancer nurse specialist, reminded me with a warm smile. I was glad to see her at my bedside and felt reassured as I came round from my operation to remove the cancer in my colon. ‘Sure, OK,’ I said and drifted back to sleep.

It wasn’t until many months later that I realised I wasn’t sure what she meant. What are the signs? What should I be looking out for? How do I know that I have a problem? Am I going to have a breakdown? Will I develop a mental health issue?

Five months on, I looked back to the time of my diagnosis and it was like someone had pressed the ‘Pause’ button on my life. On a practical level, I’d found myself on the cancer conveyor belt of tests, consultations and decision-making. Mentally and emotionally, it felt like more of a roller coaster ride.

My energy levels were low and I was always tired. I couldn’t focus on work for more than half an hour and I struggled to motivate myself. I’d lost my mojo and I had ‘washing machine brain’ – full of inane thoughts that just went round and round. Questions preoccupied my brain: Why am I still tired months later? When will I feel normal again? Will I ever feel normal again or is this how I’ll be for the rest of my life – a fragile imitation of myself? Will the cancer come back?

It all started one Tuesday, two days after my 50th birthday, when I had a colonoscopy to investigate why my irritable bowel symptoms had worsened over the last year. When they found a tumour in my colon, I wasn’t concerned as I figured it wouldn’t be cancerous, just a benign lump that could be removed. After all, I was the fittest I’d been for years. I was running, swimming and cycling six times a week and eating a healthy diet, with occasional treats here and there. I’d completed my first sprint triathlon in 2015 and was training to do four more in 2016.

A few days after the colonoscopy, I was home alone and received a letter for a follow-up appointment the following Tuesday. It was with a consultant I’d never seen before so, naturally, I looked him up online; ‘Cancer Team’ came up. My first reaction was ‘Huh? How can that be? Cancer?’ I was convinced they’d got my biopsy results mixed up with someone else! I’m active, fit and healthy; surely cancer doesn’t happen to people like me? Obviously, it did, and you can read more of my story in Part 2 of this book.

Along the way, with some help, I recognised that going through cancer is about dealing with a series of losses, and the initial psychological impact is grief. This was an ‘aha’ moment for me because handling grief is something that I have expertise in. However, having met and connected with many cancer patients, I’ve noticed that there isn’t much knowledge or understanding of grief arising from the cancer experience.

What’s more, much of the advice given about handling emotions stops at ‘talk about it’. But sometimes, talking isn’t enough; cancer can trigger a significant emotional and mental response in some people and without the right understanding and proper support, they often struggle to function, or bury their pain and act as if everything is OK. That breaks my heart because it doesn’t have to be like this.

And that’s why I was compelled to write this book – to raise awareness of cancer grief and to guide those affected by cancer towards greater peace of mind and heart.

One Size Doesn’t Fit All

Cancer is a unique experience for each person. There are hundreds of different types of cancer and they are caught at different stages, and require a number of tests and individualised treatments. There isn’t a one-size-fits-all cure and on top of that, your treatment experience and your response to the treatments can range from ‘dreadful’ to ‘excellent’.

To start with, there are the three words no-one wants to be told – ‘You have CANCER’. As you absorb the news and what it means to you and those around you, you then have to cope with the cancer conveyor belt – a series of tests, consultations, decision-making and treatments. Add to that the strain of breaking the news to your family, friends and work, of having to handle their reactions, opinions and advice, and of keeping them up to date. It’s a lot to cope with.

If the odds are in your favour, you survive the cancer conveyor belt, but the regular check-ups and tests to monitor you for the next few years can bring back some uncertainty and anxiety. Or maybe you are still living with cancer. Perhaps it comes back or it spreads and you need further treatment, so you feel like you’re back at square one. It might be that the cancer is incurable and although ongoing treatment keeps it under control, you’re living as best you can with the uncertainty. Or maybe you have limited time left. Whatever your circumstances, you are facing a different reality to what you had previously, one which is unique to you.

Whilst our experiences of cancer cannot be compared like-for-like, there are common physical, emotional and mental responses that most people can relate to and need to adjust to.

In my survey of cancer patients aged between 30 and 60, at different stages of their cancer experience:

Almost 90% experienced fatigue and low energy levels.

Three-quarters had physical side-effects.

About a third said that they felt more emotional and had concerns over their mental health.

About one in five struggled to function at work or had problems with eating.

One in ten reported feeling differently about their relationships.

Regardless of where you are on the cancer conveyor belt, the mental and emotional impact of cancer is a psychological roller coaster.

Psychological Impact

Having cancer is a life-changing experience and it leaves its mark on you physically and psychologically.

The Oxford Dictionary defines the word ‘psychological’ as:

‘Of, affecting, or arising in the mind; related to the mental and emotional state of a person.’

In my experience, and that of others I’ve interviewed for this book, cancer patients are generally better informed and prepared for the physical side-effects once the treatment is over. It is recognised that there may be ongoing pain, fatigue, nausea and so on; it is understood that you need to rest frequently and that your physical capabilities may be limited for a while; and it is accepted that time will help your body to heal.

However, it’s a different story when it comes to dealing with the psychological after-effects – the mental and emotional impact of the experience. Whether done consciously or unintentionally, the most widespread response is to ignore, bury or avoid uncomfortable or unfamiliar feelings and thoughts. But in the quiet moments, if you pay attention and listen to yourself, you are likely to find that your mind and your emotional heart are not at peace.

Commonly, thoughts about the cancer go round and round. You may be asking yourself questions similar to those raised by respondents to a survey I did for this book:

When do I feel normal again?

When will this go away?

Will I get past all this?

How do I stop thinking about the cancer coming back?

How do I move forward with life without the fear of reoccurrence?

Why do I wonder where and when cancer will come back? Is that a normal thought process?

How do I recover from the trauma of a shock diagnosis and how do I improve mentally down the track from cancer?

When can I overcome the stress?

How do I cope with terminal diagnosis?

Why did my ribs break? Will they always be weak? Will they break again?

Why hasn’t anyone got any answers?

Why did some friends find it hard to interact normally with me when they found out I have cancer?

How can I cope with feeling more emotional than before getting cancer in everyday situations?

Is it normal to think about what has happened on a daily basis, sometimes even dreaming of it all?

Will I ever stop thinking: ‘Is it going to come back?’

How do I get my adult children to understand that I need their practical support a bit more? They are so used to me coping well.

How can I move forward positively, being vigilant but not focusing on whether it will come back?

Is there ever going to be a normal day again?

Will I ever forget this in time? Will I feel normal again?

How do I deal with thoughts about dying?

Why did I survive?

Why am I still here when others died?

At every stage of the cancer experience, even after treatment is over, you will encounter psychological reactions. Everyone does because it’s how humans process significant change. If you’re not prepared, ready or willing to admit to having an emotional or mental response, just know that it’s happening inside you regardless.

Dealing with the Psychological Impact

From my research and my own cancer experience, there is a lot of useful advice to help cancer patients look after themselves physically, nutritionally and financially. However, I found that the advice on dealing with emotional and mental side-effects is patchy and usually stops at ‘talk about it’.

Talking is, of course, helpful and gives you immediate comfort. It also helps you to discover and understand what’s going on. However, in order to be fully at peace with your cancer experience, you also need to take action to address and release your emotional pain, not just talk about it. Whether you are living with cancer or have been given the all clear, performing an emotional clear-out will give you freedom to live life on your own terms without any unresolved emotions weighing you down.

Those who are fortunate to get therapy find it useful, but not everyone is able to or willing to access these services. It could be that you don’t have the money or there is a long waiting list. Perhaps you simply ‘don’t do counselling/therapy’.

However, you have an innate ability to deal with the traumatic events you face. We all do. But over time, with the ‘busy-ness’ of life and striving to succeed or survive in the modern world, you may have lost the connection with this ability. This could leave you struggling psychologically or putting up barriers so you don’t have to feel pain. Either way, your potential to live and function fully becomes restricted.

The objective of this book is to help you address the questions above, and give you and your close friends and family a better understanding of the emotional and mental impact of cancer. It will also equip you with the know-how to help yourself (and others if relevant) to let go of any emotional pain caused by the cancer. It is possible for you to take care of the psychological impact and to live well.

How to Use this Book

This book will show you how you can help yourself and it will equip you with tools and ideas that you need to handle the psychological impact of your cancer experience. It will be of value to you no matter where you or your nearest and dearest are on the cancer conveyor belt. It will help you to reconnect with yourself and figure out a way forward that works for you, whatever your current circumstances.

If it’s not you who has or had cancer, you will still experience emotional and mental reactions. Although your own life may not have been threatened, it will have been changed and much of it beyond your control. This book will also help you to come to terms with the psychological impact of what’s happened and to deal with it.

The book is split into three parts so that you can access the section that will be most useful to you at this point in time. For instance, if you have just been diagnosed, it is unlikely that Part 3 will be relevant to you now but Parts 1 and 2 will provide you with a lot of valuable insight as to how to tackle the psychological effects as you experience them.

Since each part is designed to be stand-alone, you may find that there is some repetition. This is intentional.

Part 1: Psychological Response to Cancer

This section outlines the mental and emotional responses to the transformative experience that is cancer. It will deepen your understanding of the psychological side-effects.

Part 2: Stories of ‘Normal’

Here, there are real-life personal stories from eight people to illustrate the range of emotional and mental responses that people have to cancer. In doing so, I recognise fully that your experience will not be the same; parts may resonate with you but others may not. There is no one-size-fits-all.

Part 3: The Workbook

This contains a series of exercises, split into four stages:

Stage 1 – Mapping Your Cancer Experience

Stage 2 – Discovering Your Guide to Life

Stage 3 – Taking Stock

Stage 4 – Letting Go

I am not a medical professional