07 Dec The Cancer Roller Coaster: Emotions do matter
‘Don’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 it 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 and was training to do four more.
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 I’m sharing my story here and because I’m giving you with my emotional truth, it’s a long blog. I hope that it will ignite greater awareness in you of your own psychological response to cancer because I know that this helps with recovery and improved wellbeing.
Here’s my story…
As I mentioned earlier, I discovered that the tumour they found during the colonoscopy was cancerous because of the appointment letter with the cancer team the following week.
That Saturday night, reading the letter at home alone, this fear rose up, followed by a need to know more: What is bowel cancer? What can be done? What are my chances of survival? Will I need chemotherapy and radiotherapy? How long will I have to be in hospital? I was living a long way from my family; would I have to move? I spent the rest of the evening researching, finding out as much as I could.
I’m an information-seeker so I read and read and came up with a list of questions I wanted to ask the consultant. I was impressed by the cancer charity websites with their clear medical information and guidance on cancer diagnosis. The main relief at this point was realising that my chances of survival were high as the endoscopist had said the tumour was ‘in the early stages’ and I clung on to that. Having researched and reached this conclusion, I felt calm and was able to relax.
Now, how do I tell my family and friends? What words do I use? I made the decision not to tell anyone else that evening as I wanted to give myself time to digest all of this and frankly, I’d spent enough time thinking about cancer and I needed to switch off. The following day, I told my mum, my cousin and one close friend; that was all I could manage. A big part of me was still convinced that the consultant would say it’s not cancer so there was no point in alarming everyone.
I spoke to my friend who had had breast cancer a few years before and I found it helpful to hear about her experience, especially her advice about taking someone along to the consultations. I had planned to go alone as I’m fiercely independent and don’t like to bother other people, but she said that she had gone alone to all her consultations and it’s the one thing she would do differently. I was glad that I followed her advice as having my cousin by my side taking notes and giving me moral support before and after the consultations made it an easier experience. Especially for the first consultation when they confirmed it was cancer and there was no mix-up. It was real. Apparently I could get cancer and I had bowel cancer.
I then struggled with wanting to understand why I’d got cancer; what had I done wrong? What should l have done differently? In mulling this over, I became aware that I had unknowingly formed a belief that only people with a genetic predisposition or people with unhealthy lifestyles get cancer. Not so. Sometimes cancer just happens. Random. Bad luck.
When I read the information leaflet that lists the factors that put people at increased risk of bowel cancer, I didn’t tick any of the boxes. Looking at the typical tell-tale symptoms, I only had one – a change in bowel habits, but I put that down to my worsening irritable bowel symptoms that I’d had for 7 years, caused by work stress.
The situation I was facing was serious. I decided to take it step by step by step, and responded to what each test or scan revealed about my treatment options. In between, I continued working but there was an ongoing battle in my head because I was determined that the cancer wouldn’t stop me – but I was struggling to focus. After a lot of self-resistance, I was forced to give myself permission to be OK with not achieving as much at work and just doing the minimum. I then had to warn my colleagues that I would not be able to work as efficiently as usual. Admitting this felt a bit like failure.
I also had a lot of ‘cancer admin’ to get through and my brain fog was constantly present. I did a lot more research about the tests and about diets that help the immune system. Then there was the job of having to respond to others as they heard my news. Apart from the medical uncertainties and decision-making, the one part I found most challenging and stressful was how others reacted when they first heard the news and then having to keep them informed.
My family and friends love me and obviously wanted to hear the latest after each test, scan and consultation. But I felt conflicted; I was grateful and knew that I was lucky that so many people cared and wanted to talk to me and to know how I was doing, yet I found it exhausting having to say things over and over again. I’d then feel bad about being so begrudging and start telling myself off, which left me even more emotionally drained.
At this point, post-diagnosis when I was having a series of tests and scans so that my treatment could be determined, I spent a lot of my time on the couch sleeping or watching something inane on TV because my brain was overwhelmed. And that was hard for me as I was used to being active and useful and here I was, having very little energy.
To stay sane, I had to accept that for now, I would have to slow down and train myself to be OK with functioning below par. But it took me a while to adjust to this as I’d often forget and resist how I was feeling.
I did get angry with a friend who would talk to me as if I was about to die, and was irritated by another who couldn’t resist telling me about other people they knew who’d died. Really?! There were also those who said, ‘Wow, you’re so fit and active and you still got cancer. Just shows you, there’s no point in exercising!’ How is that helpful? I had to bite my tongue a lot. And my cancer experience has confirmed that there is a point to exercising and being fit because it means that when you’re hit with a major illness, you are likely to recover more quickly from the treatment and experience fewer complications. Of course, being fit doesn’t mean that someone won’t face cancer or another major illness, or that there couldn’t be complications with treatments, but I believe the odds are more in your favour.
I was also really conflicted when some well-meaning people would advise me to take a particular vitamin or wonder food as it would clear my cancer and I wouldn’t need any treatment. Although I knew they were coming from a good place, the implication is that I got cancer because I hadn’t been eating properly or nourishing my body. I found this both hurtful and irritating. It added to my existing self-reproach that I was to blame and by not eating correctly, I got cancer. It was really unhelpful and increased my stress levels.
Plus, facing a potentially life-threatening disease, would I take the risk of relying on vitamins or a particular diet to cure me? No chance! But I did eat simpler food so that my gut didn’t have to work hard and my body could then focus on fighting the cancer and stopping it from spreading.
In the end, I was lucky. After weeks of uncertainty, waiting for various scan results, it was confirmed that the tumour was contained in the bowel so the first step was an operation to remove part of my colon and review treatment options based on the histology of what was removed. A few weeks after the operation, I was delighted and relieved to be told that none of the nodes were affected and that I wouldn’t need any further treatment. I was over the moon. Apart from the standard regular post-treatment check-ups, that was hopefully the end.
First Few Months Post-Treatment
Like most cancer patients, I was physically and mentally fatigued. I was recovering well from the operation, yet there was this incessant white noise in my head going round and round; not profound insights, just songs I’d heard or thoughts about an inane TV programme I’d watched. Although I am a regular and experienced meditator, I struggled to meditate. I struggled to focus at work. Was this what the nurse meant when she said to watch out for the psychological effects? What do I do about it? I asked the nurse for help and she put me on the hospital’s post-cancer group course.
When people ask me about my cancer experience, I say that I was luckily unlucky: unlucky to have had cancer and lucky to have caught it early, only needing an operation and to have had an excellent medical team – many others are not so lucky and that complicates their emotional response to their experience.
Talking with my cousin after each meeting about what the consultant had said and what that meant, helped me to deal with the early stages of the conveyor belt. She was the right person because I’ve known her all my life and I didn’t need to wear a mask with her. I could be open and completely honest about how I felt even if it was negative, but at the same time, we often had a laugh and a giggle as we sat in the waiting area.
I’d given her a clipboard, paper and pen so she could take notes and we joked about how intimidating that might be for the consultant. It was a way for me to take control and having the notes helped with questions that cropped up afterwards as I couldn’t always remember everything the consultant told me because of my foggy brain.
My family were also helpful in that they let me determine how I’d like to be supported. Mostly, I wanted to relax and recuperate after my operation so I turned down all offers to visit me because that would mean me having to make sure they were OK. My bowel movements were also not very ‘pretty’ for several weeks and I didn’t want anyone else to witness this! The best way for me to stay stress-free was not to have visitors.
My mum did stay with me a few days after I was discharged and made sure that my first meal was a treat – delicious lobster! Friends in my village also popped round with soup and flowers. It was little things like this that meant a lot.
A week later, I was able to go back to my running club to help with the beginner’s course as that involved sitting and talking; I could do that, although I wouldn’t stay very long as the effort exhausted me. It was really good to have something to focus on though.
Being able to work flexibly was a huge help. I’d do a couple of hours in the morning, then rest for about four hours before doing another couple of hours. It wasn’t only the physical exhaustion; my brain was fuzzy for several months. Gradually, I went back to working full-time.
The hospital’s post-treatment course was really useful as it helped to hear about others’ experiences and how they were coping. Although we all had different types of cancers and experiences, we were going through a lot of the same things. I was surprised by how much we had in common. The facilitators, especially the clinical psychologist, were very supportive and participants were encouraged to share their own truth regardless of what that was.
I was feeling like a fraud by attending these sessions as I was one of only two people who hadn’t had chemotherapy or radiotherapy. I also felt that five months on from my operation, I should be back to normal so I was extremely frustrated with myself; after all, I had no reason to still feel under par. Being able to share this out loud with the group helped me to work through this and I was constantly reminded of how important it was for me to be kinder to myself.
In this group, people of different ages and backgrounds with different types of cancer reported a lot of very similar post-treatment challenges, particularly fatigue and a sense of loss/life-changing event. And that’s when the penny dropped: going through cancer is about dealing with a series of losses and the initial psychological impact is grief. As a Bereavement Volunteer, grief is something I knew a lot about so I felt a great sense of relief as I was now on familiar territory and knew what to do. Phew, there was nothing wrong with me mentally!
However, having met and connected with many cancer patients, I’ve noticed that there isn’t much knowledge or understanding of grief – most think that it’s only to do with death. Not so. Here’s the best definition I’ve come across:
Grief is the conflicting feelings caused by the end of or change in a familiar pattern of behaviour. (The Grief Recovery Institute)
So grief is the normal and natural emotional response to change; it could be loss of health, loss of a job, a relationship breakdown, moving countries, etc, which can then lead to intangible losses such as loss of confidence, self-esteem, trust, purpose, motivation, and more.
Since 2012, I’ve helped over 400 grievers through my voluntary work on a helpline and ongoing one-to-one support. I was aware that it’s natural and normal for humans to grieve after a major illness, but finding myself in autopilot on the cancer conveyor belt, I’d completely forgotten this.
Also, the term ‘psychological impact’ had thrown me as I was expecting to have some kind of mental breakdown; something abnormal and unfamiliar. Instead, what I was going through was grief, and once I realised this, I knew that I’d be OK as the emotional and mental turbulence of grief is something I’ve handled many, many times after other major changes in my life.
By amalgamating the experience and expertise I’d gained over the years, including my training as an Advanced Grief Recovery Method Specialist®, I helped myself. In this way, I was able to regain my peace of mind and my emotional wellbeing within weeks. The white noise in my head faded away, I was able to meditate again and I went back to functioning fully at work.
As part of the life-changing experience of cancer, I also realised that I wanted to and could help others handle the emotional and mental impacts of cancer and other life-changing events. I formed a not-for-profit company, Altered Dawn CIC, with the objective of raising awareness of grief and supporting grievers.
In particular, I wanted to give cancer patients the know-how and support they need to secure lasting emotional and mental wellbeing. I’ve come across so many who are struggling to function or have suppressed their emotions over years. Cancer leaves us with grief and there’s a lot we can do to help ourselves. I wanted to share my knowledge and tips to as many people as possible so in February 2019, I published a self-help book The Cancer Roller Coaster – how to manage the emotional and mental impact.
Right now, I feel optimistic about the future as well as a bit anxious at times, especially when I have follow-up checks and wonder if the cancer is back. I’m OK with that.
How about sharing your story?