Frances, VIC – I’m not down on everything, I just wish people understood

April 2nd, 2014

My story I feel is different, but not unheard of, and I think it’s more compelling because it’s rarely told. I found out that I had breast cancer when I was 35, and I was stage four at diagnosis. I had a lump for years and that dreaded “lumpy breasts” thing that doctors and us women often don’t know what to do about – we keep getting them checked every year, don’t know what we’re feeling for, and doctors say it can’t turn cancerous.

That’s not my beef; I’m over that bit now. I’m single. I was told when I was diagnosed that I wouldn’t be able to have children, pretty bluntly with no counselling. I worked through the first 18 months of my treatment mostly because I had to financially, but also because I needed to maintain a connection to what was normal for me.

Not being the usual poster child for breast cancer, I don’t have a doting husband and a couple of cute kids to look after and look after me. I do have family and friends, but it’s not the same when it comes to making you marketable.

I’ve stopped work now, as I couldn’t do my job properly anymore. My employers were great, and I was good at my job. I’m in demand and still get job offers, but I’m not well enough to work anymore, so I have to live on disability support pension.

I recall when I was in my 20’s and in a long-term relationship, thinking about marriage, babies, buying property, that I had the thought about how horrible it might be to get a disease like cancer at a young age and be dying, and alone. It wasn’t a thought I pondered because at that stage I thought it would never happen to me.

My life was pretty perfect then – on track, going to plan. Things changed, and I took a different path. Unfortunately, that nightmare of dying of cancer alone is a reality for me.

I feel I’ve had a good life. I’ve travelled extensively, lived overseas, and had great relationships. I’ve tried dating since my diagnosis, and I know some people find happiness, but I found it too hard explaining all the time. People don’t get it, so I gave up.

These days I’m really quite unwell. Over two years of solid treatment we’ve found out through trial and error that I don’t respond to hormone therapy and that chemo doesn’t seem to work on my bone metastases. Some chemos have worked on my liver metastasis, but they stop working after a while. I’m pretty much down to my last option – the drug, Eribulin – which I’m paying $2100 per week to have. My superannuation is paying for it, but the money won’t last very long and I just don’t have enough accumulated at my age.

Breast cancer has taken everything from me. My career, the ability to have kids, my financial independence, all of my money, the chance of getting married, my figure, my ability to be free and live life the way I want. I don’t mean to be a big downer, and make you or anyone feel sorry for me; I just wish that occasionally my side of breast cancer might get an airing.

When people meet me, especially when they find out my situation, they always comment on how well I look, how inspirational I am, how positive and upbeat I am, and generally they’re right. Most people find it hard to believe and accept that I am dying, it’s perplexing. I am not down on everything, angry or even sad. I just wish that people understood.

I think representing the stories of some of us younger ones, especially those of us that aren’t poster children (doting husband and cute kids), might help people connect better. I know it’s often said that the media dictates the stories that get told, but organisations like National Breast Cancer Foundation play their part in shaping the story as well.