IN THE past, life after breast cancer was like life for a survivor of the Titanic. The sheer fact of escaping annihilation when others perished overshadowed the difficulties many survivors subsequently endured. Gratitude for just being alive was the overwhelming reaction.
Gratitude isn't enough anymore. Figures much-quoted during October . . . Breast Awareness Month . . . indicate that, thanks to improved treatment and earlier detection, cancer survival rates have improved by 6% over the last 10 years. Every year in Ireland, close to 2,300 women are diagnosed with the disease. Of those, 600 will die. That means the majority survive. Breast cancer may still be the most common cancer and leading cause of cancer death among Irish women, but it is no longer the death sentence it once was.
As the numbers of women dying from the disease decrease, attention has turned to the physical, emotional, psychological and financial complications that the growing numbers of survivors have to endure. These days, breast cancer is increasingly treated as a chronic disease, with long-term implications just like diabetes or MS.
Lillian McGovern, CEO of the Marie Keating Foundation, says that while they started out with a mission to promote public awareness about breast cancer, much of her work these days is taken up with survivorship issues.
"It's a fine line, you don't want to frighten anyone. On the one hand you're telling people 'look, it's great you've survived' and then on the other hand you're telling them 'it's not that great because the things you will have to go through are pretty bad as well'."
The "pretty bad" things survivors have to go through range not only from the debilitating side effects of chemotherapy and radiation, premature menopause, sexual dysfunction, infertility, relationship difficulties, psychological and emotional distress but also financial hardship and unemployment.
It's the financial cost of surviving breast cancer that comes as a big surprise to many women.
They always expected their medical treatment would give them a rough ride but rarely anticipated the financial difficulties that go with it.
Money problems happen because the process of recovering from breast cancer (mastectomy/lumpectomy, chemotherapy and radiotherapy) is so lengthy (between a year to 18 months) and the treatment so exhaustive that some women get worn out, lose confidence and chuck in their jobs.
McGovern says that while there aren't statistics for the number of women who leave paid employment, anecdotally, examples are common. She cites the case of a high-powered executive in her 40s whose confidence evaporated and energy levels sapped following a year of treatment for breast cancer.
The woman just couldn't face going into work anymore and gave up the job. Others feel like doing the same but can't afford to do so: "Say you're 45, single and have a mortgage. Suddenly, you're not working for a year and you have no insurance, how do you pay your mortgage?"
Dympna Watson is a breast cancer survivor and volunteer with Europa Donna Ireland, an advocacy group that campaigns for breast cancer services. She also advises women on the financial implications of the disease.
She says cancer hits women harder than men on a number of fronts because traditionally women are the carers. While many work outside the home, they are also the ones who look after spouses, children and elderly parents.
The problem is that when a woman gets sick, there's often no one around to mind her. Financially, women with breast cancer fare badly too, especially those who live on their own. Longterm financial planning is often missing. Fewer women than men take out private pensions and even fewer hold critical illness policies (ie a policy that pays out a capital sum in the event of a qualifying illness being diagnosed).
Three years ago, when Dympna began treatment for breast cancer, she went bald, piled on two stone during a course of steroids and developed what's known in the cancer trade as a 'moon face' . Frequently, she was assailed with bouts of fatigue where she hadn't the energy to lift an arm and had to cope with the side effects of chemotherapy, including a mental fuzziness and forgetfulness she calls "chemo-brain".
When her treatment finished, people said to her "oh, that means you're better now" but she says life after breast cancer is never the same again. Psychologically, the disease attacks the very femininity of a woman and it can undermine confidence. Even basic household chores such as making a bed, doing the ironing or vacuuming the house can become a problem for women who had reconstructive surgery or developed lymphodema (the painful swelling and water retention that occurs in the arm where lymph nodes were removed).
In recent years, cancer help groups have realised that more than anything else breast cancer survivors need practical assistance to help them pick up the pieces of their lives.
Dympna Watson says the biggest problem is simply asking for help. Neighbours, friends and relatives often rally round but not everyone has a ready-made support network at hand. The Marie Keating Foundation set up a "comfort fund" specifically designed to help survivors with the financial burden of their illness.
"It might be a washing machine for one person. For another, it might be assistance with childcare because the woman can't go for her treatment unless she has someone to look after her children at home, or it could simply be money to buy a proper wig because although there is a wig allowance on the medical card, people say you wouldn't put it on a dog."
Surviving survival is the new reality for people who've had breast cancer.
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