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.
Numbers, numbers, numbers. I can't even get corroborating printouts of my test results. Saw them online at an appointment, asked later for the nurse to print me out a copy, different numbers. They stuffed up my treatment several treatments ago and dod not administer side effect drugs and I was sick as a dog. I started out with a good frame of mind. The cancer centre was a haven for hope. Now I feel so different. I have to watch and question everything they do. Some of the nurses are not so competent with some procedures and I dread the time I have those nurses again and have to tell them to get a different nurse because I won't let them perform the procedure. I've lost faith and trust in them. I have had a problem with smells in the centre and I have told them every week it is making me nauseous. They just shrug it off. Finally I figured out it was the antiseptic. Seems after being on my skin, or in contact with bandages, the smell becomes intolerable for me. When I do the extended pump treatment it makes me nauseous all the time. Now the smell of the clinic itself is making me nauseous. It's like there is never any fresh air in there. I try to sleep through the treatment to make it through, but I don't want to/can't eat while I am there and it is a long treatment, all day. I read posts where people say their CA19-9 readings and I can't relate. My numbers seem so different. I see the promise of the immunotherapy trials and hear about some responding so well. How can I get into this treatment? Are the doctors even looking into other options for me? I don't think so. They must be swamped with the number of patients they handle. The doctors say I am doing very well. But do I believe them? Not really. The numbers don't suggest that to me. I'm just confused. I want to know how much time I have left. I have things I need to do. But I am too fatigued to get much done. When or do I quit chemo so I can feel more normal to get stuff done? Most of what I know is from my own research. Why not have a room at the centre where someone helps patients with that kind of stuff? Our time is valuable and each of us as well as loved ones spend tons of time reaearching. I'm stopping here. There is so much more. Sometimes I wish I hadn't gone to the emergency room with a pain in my abdomen thinking I had appendicitis. My last 5 months would have been normal. Not full of confusion, trying to protect the only 3 people I have told and my privacy. Worrying every day that my husband will break down and tell someone else in this nastily gossipy community. He's already said too much. Thanks for the rant time. Didn't really help but.
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