‘I’m grateful to be alive after breast cancer... but a price has been paid’

I AM lucky in that my first encounter with serious illness was in books. To my nine-year-old self, Katy in What Katy Did seemed the object of envy for having such a dramatic and somehow romantic illness. Yes, her injury was debilitating but look at how much school she missed.

Later, in the 1990s, the taboo about journalists writing personal accounts of their own illnesses was broken and Ruth Picardie’s book Before I say Goodbye provided a moving insight into breast cancer.

Nowadays, many personal accounts of the illness focus on triumph over adversity, spiritual growth and how you learn so much from the ‘battle’ with cancer.

YOU CANNOT CONTROL TIME

When I received a breast cancer diagnosis in January this year, the last thing I wanted to do was read about it. After the diagnosis, the practicalities kicked in. What is to be done, when it is to be done, and how to deal with it.

You vow that you are not going to give too much time to this. You are going to get this done. Quickly and efficiently.

Nine months later, after two surgeries, chemotherapy, radiotherapy and contracting Covid, the sharpest lesson I have learned is that you cannot control the time it will take.

“An illness cannot be rushed. It will run its course. You have to learn to be patient.

Anne-Marie, who was diagnosed with breast cancer last March, agrees.

“You spend a lot of time waiting, waiting for meetings, waiting for results. I would go in on a Tuesday and then I would wait for a week and a half until after the following Thursday’s meeting before I could get my results. All the waiting around made it more stressful.”

There were also delays in getting treatments after the surgery.

“I wanted some lymph drainage treatment and the practitioner said to wait for longer after my operation. I am now waiting for a second mastectomy.”

Although she has recovered from a mastectomy last spring and gone back to work, Anne-Marie feels that she is still in transition in terms of her treatment.

She has lobular breast cancer, which accounts for just 10% of all breast cancers and is much more difficult to detect than ductal cancer.

This means that she would like the reassurance of a second mastectomy.

“I am waiting to get the second mastectomy as I have no confidence in the technology to detect lobular cancer. Lobular cancer gets thrown in with ductal cancer but is very different.

“I will not be able to fully move on and plan my life until I get the second mastectomy and the chance to decide on reconstruction or not.”

Anne-Marie is also living with the side effects of lack of oestrogen. She is opposed to the fact that women are automatically put on aromatase inhibitors (AIs) to lower oestrogen.

Anne-Marie is hopeful that acupuncture will help alleviate the joint pain caused by the drop in oestrogen.

“My oncologist recommended acupuncture. So, I rang Arc House in Cork and they got back to me with a cancellation and now I am booked in for four sessions,” she says.

“They were very kind,” she adds.

KINDNESS IS KEY

People’s kindness when you are ill is indisputable. Elaine, who was diagnosed with ductal breast cancer four and a half years ago, still very much appreciates those who “loved and supported” her throughout her illness.

Having breast cancer, however, taught Elaine something about the less positive aspects of human nature.

“Your illness makes lots of people uncomfortable. They don’t know what to do or say and they will either make you feel invisible or disposable.

“Because I look relatively ‘normal’, it feels sometimes like I’m supposed to go back to the old me, but she is gone and a frailer, more vulnerable, sadder person is in her place.

“In my case, I have ongoing consequences of treatment and severe side-effects from medication on a continuous basis, which can be very hard to live with.”

She is having psychotherapy to help deal with the trauma of what happened to her and feels that it is an ongoing process.

“Four and a half years on, I am still processing the trauma of what happened to me.

“For the first couple of years, you go into survival mode, and it can take a long time before you begin to deal with what has happened to you.”

GRATEFUL TO BE ALIVE -BUT A PRICE HAS BEEN PAID

Elaine has a refreshingly sceptical view of the contemporary emphasis on high achievement in recovery.

“To be honest, I feel like a bit of a ‘cancer survivor’ failure because I’m not running marathons or climbing Everest or CEO of a sexy new start-up - all while looking insta-ready amazing,” she laughs.

A great deal of energy is expended on maintaining equilibrium, says Elaine.

“Most of the time, every day is a struggle physically and psychologically.

I’m terrified of my cancer recurring and killing me painfully. I resent the fact that my life is now framed by the consequences of cancer.

“I’m very grateful to be alive and functioning but a price has been paid and continues to be paid.”

Her needs have changed from the time of diagnosis to her current status as a cancer survivor.

“Hopeful stories are great to read and I really needed them when I was diagnosed, but my reality is much more nuanced than a simple linear narrative of diagnosis, treatment, cure,” says Elaine.

Elaine feels that the “cult of positivity” can make the life-altering nature of cancer difficult to deal with.

“Sometimes, I think it’s just me, but at my age I know that if I am thinking or feeling something, then there are others thinking or feeling the same thing.”

Oversimplification does not help, in Elaine’s view.

“Outsiders and those who haven’t been through it themselves sometimes feel you should be able to put all your experiences into a box and put it away.

“People love the easy answer, but like everything else in the world, it’s messy, and human and grey around the edges.

“Today is good, but you don’t know about tomorrow.”

FEAR OF CANCER’S RETURN

Elaine feels that not knowing what the future will bring is the most difficult aspect.

“Fear of recurrence is very real. The life that you had pre-cancer you will never have again. You cannot undo an experience of cancer.

“You can’t unlearn what you have learned.

“Four and a half years on, I am constantly reminded that I am in a different category of risk. It’s great that breast cancer is not a death sentence anymore, but the uncertainty is difficult to live with.”

First names only have been used, as the interviewees request.

SUPPORT SERVICES YOU CAN AVAIL OF

Cork ARC Wilton - Cork ARC Cancer Support ( corkcancersupport.ie)

Arc House provides services for those with cancer and cancer survivors including mindfulness, yoga and acupuncture.

You can contact Arc House on (021) 427 6688.

Cancer Daffodil Centre - Cork University Hospital (hse.ie). The Daffodil Centre is at Cork University Hospital and provides information and advice related to all your cancer concerns. No appointment necessary. Contact: 021 4234536

Cork Cancer Care Centre provides a space for cancer patients and survivors to meet. It also provides services such as holistic treatments, psychotherapy and counselling.

See https://www.corkcancercarecentre.ie/

Or contact (021) 494 9090.