This is a piece of writing (published here with permission) from a woman in Cancer Council's Metastatic Breast Cancer Telephone Support Group. It's an honest and raw description of her reaction to some 'good news' and how it is to be trying to live as best as possible, knowing she's dying too.
Living to die – what nobody tells you about living with metastatic breast cancer.
So I’m confused, the oncologist has just told me my cancer markers are the lowest yet and my liver function results are also better. He even blithely said I might live for years. I can see the sheer delight in my husband’s eyes. I feel panicked. I’ve given up the best job of my life in exchange for a 2 day position. I’ve been making decisions to live a short life.
It was supposed to be bad news. I was ready for that. I already had the next months of more chemo and its shitty effects mapped out in my brain. I was almost looking forward to it! Being told what to do, when. A rationale for how to manage the next months and feeling crap.
What’s wrong with me? Why aren’t I feeling the same delight? We go straight from the oncologist’s office to dinner to celebrate. I think I must be crazy but get into the wine and my husband’s happy mood.
Must have been some sort of weird shock reaction. We tell people the great news. That’s what you do. The new tamoxifen treatment looks like it is working for now. Better than all the fluctuating and depressing results of the last 12 months after taking the latest of ‘you beaut drugs’ and lots of chemo. Someone even asks if I can now maybe live for another 20 years. Everybody knows people who have been on tamoxifen and lived for years – so why not!
Absolutely f**g NOT - that’s why! Maybe someone else. Not for me. Not living this half-life. Constantly compromising. Living in limbo, waiting to die. It’s always there in some part of my brain - just out of full view, usually. Lurking.
That’s what we talked about. Me and others in my [telephone] support group for woman living with metastatic breast cancer. It’s not just me having these unspeakable or impolite dark truths. It’s reassuring to talk.
So what if my results say I’m doing better? If I’m supposed to be grateful, I’m not. I’m still dying – just not right now. But we woman in this group all live with the same knowing of the likely terminal end from this disease.
We often look good – not sick. We want to tell people to shut up when they tell us how good we look. A salve for their conscience?
We go about our lives functioning the best we can. Despite the daily battle of fatigue. The low starting energy levels and any and all actions equalling yet more fatigue. Barely getting through a full day without feeling it, or some other effect of the cancer or its treatment. Our abilities and our world narrows in focus as the disease and treatment takes its toll.
The guilt of checking out early and the burden we feel we put on the ones we love. Even if they tell us otherwise.
The guilt of thinking, let alone saying out loud, that we may not want to live long with this constant battle. Especially when we still experience joy, happiness and love. It can make no sense to others.
I’m not depressed and definitely not suicidal. I want to live and I want to live fully, and that’s a hard place to arrive at when every day is a constant reminder that there is no recovery - no going back to how I was before the metastatic disease took hold.
I don’t know what I would do without being to share these things with the brave, fantastic woman in my support group.
