Jeannie's story - Personal stories • Breast Cancer Foundation NZ

Jeannie's story

If during breast cancer surgery, you have lymph nodes removed from your armpit or if you have radiation treatment of that area, you're at increased risk of developing lymphoedema, which is a swelling in the arm and hand. It can occur shortly after surgery or years later. Around one in four women, like Jeannie, develop lymphoedema. She shares her story on how this debilitating condition has affected her life.

"My right arm is 73% bigger than my left – and it’s still growing.

I’m not going to tell you how horrible breast cancer treatment can be – you probably know already about the drastic surgery and the awful side effects of chemotherapy. The treatments are bad, but they're worthwhile because, if you’re lucky, you get your life back at the other end.

That’s what I thought when I was diagnosed in 2012, at age 59 – I thought I was one of the lucky ones. In fact, my treatment went so well, my doctor promised I’d live another 30 years! I couldn’t wait to start feeling normal again. I never got the chance.

Within two months of surgery, my right arm started swelling and I developed some cording in my armpit. It wasn’t bad, not compared with everything else I’d been through, and my doctor didn’t seem too worried. But when it got worse, I mentioned it to my oncologist – he referred me to my local hospital’s lymphoedema clinic.

Someone had mentioned lymphoedema on the long list of things that could go wrong after breast cancer treatment. They’d told me I should protect my right arm, since I’d had all my lymph nodes removed.

They didn’t tell me lymphoedema could disfigure me, make everyday work impossible and turn a good night’s sleep into a distant memory. They didn’t tell me I might be stuck with it forever.

Now my right arm is 2kg heavier than my left. That’s like having a two-litre bottle of milk strapped to my arm – all day, every day. The smallest scratch makes my arm ooze lymphatic fluid. It sounds horrible, and it is. My arm is wet all over, and it’ll drip, drip, drip for days.

There are many other women like me, suffering lymphoedema after breast cancer surgery. Some of them are even worse off than I am. Sadly, there’s not much the standard treatments available in New Zealand can do for severe lymphoedema, and the condition isn’t a priority for our busy health service.

Lymphoedema is exhausting, and frustrating. It looks awful. The skin feels hard and stretched tight – it’s sometimes painful, often restrictive, always uncomfortable. I do what I can to relieve the discomfort and to stop it getting worse. I self-massage, I keep my arm out of the sun, I wear two pairs of gloves when I’m gardening. I wear a super-tight lymphoedema sleeve 24/7... except for when the sleeplessness gets too bad.

Sometimes, I go to the hospital and they bandage my arm for a couple of weeks. It’s called compressive bandaging. It helps, so it’s worth it, even though I can’t bend my arm – I look like a mummy!

The lymphoedema therapists are wonderful. But they’re so busy, one of them even did my bandaging in her own time. Appointments every few months aren’t enough to keep on top of my condition and I can’t afford private treatment.

I now know that about 25% of breast cancer survivors will develop lymphoedema. Not always early on, like I did. Sometimes it sneaks up on you years later. And when you don’t know the warning signs – if, like me, you were told about them when you had a hundred other more urgent things to worry about – it can take hold and be much harder to treat.

I have to be cautious all the time, and pace what I do, so I don’t make my lymphoedema worse. I can’t do my job properly. Bob and I rely on my earnings as a document specialist, working from home on health and safety certifications. With my lymphoedema I can’t type for long.

Lymphoedema has seriously affected our income. It wears you down, it tires you, it makes you grumpy. The prospect of having this forever is awful. It scares me.

Some days, I can feel the fluid in my hand – it’s like swampy ground. Other times, the lymphoedema sleeve gives me a rash, which easily turns into an infection. Any infection in that arm is serious, hard to treat. Sometimes, late at night, I worry that if I get a bad infection I could end up losing my arm.

My right arm is a constant reminder that I’ve had breast cancer, and I don’t want that reminder.

BCFNZ urgently needs funds for bioimpedance machines and treatments to help women like me with lymphoedema. Bio-impedance machines are a new tool for predicting and monitoring the development of lymphoedema. It could have helped me."

After Jeannie shared her story, she became New Zealand's first woman to have long-term relief for lymphoedema in April 2016. Read the full story here.

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