When Jenny Watts hears someone describing cancer as a “journey”, she feels like hurling something at the television in rage.
Jenny, who is in her 30s, is undergoing treatment for breast cancer and says even at the time of diagnosis, the specialist told her it was the start of her journey and the word made her “want to scream.”
“To me, journeys are fun and pleasurable and things you have control over,” she tells HuffPost UK. “For me personally, the correct metaphor to describe cancer would be a rollercoaster because there’s so many ups and downs.”
Jenny, who lives in Lancaster and teaches English as a second language to university students, was diagnosed with cancer at the age of 34 after she went shopping for a sports bra. Under the bright lights of the changing room, she noticed a shadow and dimpling on her breast. Within 24 hours, she had an appointment with her GP and was sent to hospital for scans and tests.
As she was young and healthy, Jenny remembers hospital staff being polite and efficient, but thinks they weren’t really expecting there to be something wrong. However, she recalls their reactions changing when they looked at the scans. She was told to return in a week’s time and bring someone with her. It was on this visit that the cancer specialist used the word “journey”.
“I can completely understand why he said ‘journey’ as he meant it was the start of a long slog” says Jenny. “But for me, it was the wrong language.”
Since her diagnosis, Jenny has had surgery, chemotherapy and radiotherapy and is currently having injections every four weeks, which she will need for at least another year. She will then have to take tablets every day for 10 years to help prevent the cancer coming back. Her experience of treatment made the rollercoaster analogy most apt, she says – “the ups and downs; the fear; the nausea; the vomiting.”
The words of a perceptive nurse at the time of her diagnosis have also stayed with her. “She told me I would hear a lot of ‘be positive’ type remarks. But she said it would be a challenge just getting through day-to-day experiences so I should just be authentic and true to myself.
“I thought this was a brilliant thing to say to me and it felt really freeing.”
Jenny doesn’t like to think of herself “fighting” or “battling” cancer, but knows other people find that language empowering. “I don’t feel like I ‘battled. I just turned up for my appointments and did as I was told. From my perspective, I think the ‘fight’ comes later on after you have been through all the treatment.”
Even the word “survivor” makes her uncomfortable, despite it often being used with the best of intentions. “It makes me feel uncomfortable as I am still going through it.” she says. “When people ask if I have had the ‘all-clear’, it implies it is over. Cancer is no longer a death sentence. But I can’t imagine ever feeling I am ‘all-clear’ because of how young I was when I was diagnosed. Cancer will always be a part of my life whether I like it or not.”
Jenny realised she wasn’t alone in her strong reactions to cancer language when she attended a Cancer Metaphor workshop at Lancaster University.
“I tend to use metaphors and similes that relate to everyday experiences,” she says of her own preferences. ”I describe feeling like I’ve had my batteries removed – when I have no energy or don’t feel like myself after treatment. Or I say it’s like having the world’s worst hangover or the feeling after working a night shift when people feel groggy and don’t really know what’s going on.
“I also compare the mental fog and extreme fatigue of treatment to the sleep deprivation of caring for young children, based on conversations with friends and my sister-in-law. My friends and family could all relate to feeling like a complete zombie so making everyday comparisons was useful.”
One particular comment at the workshop stuck with her, says Jenny, even making her laugh. One participant said: “Cancer is like an unexpected lodger who turns up, messes everything up and causes chaos. Then just when you finally get rid of them and close the door, you realise they’ve kept the key.”
Based on workshops and interviews, researchers at Lancaster University have developed the first manual of cancer expressions to help patients make sense of their disease. The Metaphor Menu For People Living With Cancer takes in the views of more than 100 people involved in cancer care, from patients with advanced cancer to family carers and healthcare staff including oncologists.
More than one million words were analysed, including on online forums, with fairground rides, music and difficult journeys among the most common metaphors on the menu, which was developed with the help of Royal Preston Hospital, St John’s Hospice in Lancaster and charity CancerCare.
The research recommends that doctors and the media avoid portraying cancer as a ‘battle’, but researchers stressed there should be no blanket ban on certain words with patients encouraged to use those that best suit them.
“Our study shows that metaphors are helpful when talking about cancer,” says lead author Prof Elena Semino from Lancaster University’s department of linguistics and English language. “But different ones suit different people, or the same person at different times.” Describing a patient as a ‘fighter’ can be upsetting for some but empowering for others, for example.
“Some patients said that if they don’t get better, they feel guilty if they are seen as ‘losing the battle’,” she says. ”Some people don’t want the role of a fighter or the concept of ‘fighting with their own body.’ But others said they found it empowering and meaningful to see themselves as fighters.”
Similarly, some struggle with the idea of a ‘cancer journey’ despite it being language the NHS uses. “But some liked the concept of travelling along a road with different points where you can stop. We found there was a lot of individual variation so our menu aims to provide people with more choices and options and stimulate new and creative ways of talking about cancer.”
Cancer metaphors from the menu
These are some of the words anonymous cancer patients felt comfortable using to describe their experiences in the Lancaster University research.
“I respect cancer and never underestimate the power it has, but, if you can face up to it and hit it back head on, you stand a good chance of beating it for a bit longer.”
“Initially, cancer feels like an alien invasion. It is as if you want to strip off your body and get a new one. Then in time, you ‘connect’ with it somehow.”
“Cancer is a hard journey with many twists and turns. No two people go through the exact same route. It’s like driving a horse-drawn coach without the back wheels. It’s helpful to occasionally stop, rest the horses and review the situation with someone you are close to.”
“Cancer is part of me. The cure for cancer is accepting it, to heal is to convince the cancer cells to sing in tune with the rest of the body.”
“Cancerous tissue is like a garden that has become overgrown with weeds. The weed-killer also damages the healthy plants, but you hope they will re-grow.”
“My way of dealing with cancer is to bend with the wind.”
“Having cancer is not a fight but a relationship where I am forced to live with my disease day in, day out. Some days cancer has the upper hand, other days I do.”
“Imagine it a bit like a scary fairground ride – it might be scary in places, but it will eventually stop and you can get off. Be strong, be brave and we will be here to hold your hand if you need it.”
“The rocks in our path are easier to handle when we’re in it together. The best people to help you are the ones who have been there before you or are heading there with you.”
“I compare life after cancer to walking with a stone in your shoe. If you let the stone rest right under the sole of your foot, it hurts every time you take a step and it is hard to move forward. If you can manoeuvre the stone to sit between your toes, it is still there but you can walk the fine line of life without hurting.”
This article originally appeared on HuffPost.