A Patient's Perspective
It is impossible to truly describe the experience of being diagnosed with metastatic cancer.Although the experience can feel utterly isolating, it is important to know that know that we don’t have to be alone. Here are some stories of women living with metastatic cancer.
Dead Woman Walking
“Dead Woman Walking” is a blog from the blogsite “Telling Knots“. While the author remains anonymous, she shares her struggles with stage IV breast cancer online from the perspective of a person who loves live. Visit her at “Telling Knots.org”.
(provided with permission from Telling Knots).
Ellen – 5 years living with mets
Metastatic Breast Cancer is a malignancy in my body.. waiting to spread and ultimately destroy my life and kill me. It means I have no control over what is going on inside me. Metastasis means fear.. always present fear. I live from scan to scan.. waiting to hear those dreaded words.. terrified that the next treatment will destroy my quality of life and terrified that there will be no next treatment available. Metastasis means having to find people who understand how I feel.. and then being there as so many of them die. Metastasis means learning to be kinder to myself because fighting this disease, fighting the cancer battle – it’s just too exhausting. I hate what it does to me every single day.. and I am so appreciative that I am able to be alive to hate what it is doing to me. And this disease has taught me how to have hope.. against all odds… hope that I will be cured.
Lilla – 8 years living with mets
I know that women don’t die from breast cancer; they die from metastatic breast cancer. So receiving the diagnosis that I am now Stage IV was indeed frightening. I know my treatments will go on forever. Even a successful protocol will have a limited lifespan. Tumor cells will find a way to dodge the chemo bullets and become chemo resistant.
So the extensive list of available treatments dwindles very quickly, and I am left hoping that something else is out there and that one of the pipeline drugs will soon be available. Sadly, clinical trials often reject someone with more than 3 lines of chemotherapy and almost always, anyone with brain metastasis. As I face the gnawing fear that the next scan will show progression, I am terrified that there won’t be any treatments left, even uncertain ones. I wake in the morning facing death and go to sleep with it by my side. And yet I am strong. I have fought many battles; I have seen my demons face to face and have challenged them on a daily basis. I have learned how to navigate the treacherous waters and rise to each new twist.
Suzanne – 4 years living with mets
Metastasis means to me no cure, no control and at many times no hope. My body has betrayed me. There is something living in it now that could kill me. I can’t see it or luckily feel it right now, but it has control of my body and my life. Cancer cells are prowling my body tying to decide where and how to make their next strike. I can only pray that my doctors have strong enough tools to fight back the demon. I can only pray that other doctors are working day and night to make sure that tool box doesn’t run dry.
Susan – 9 years living with mets
When I first heard the words “you have stage 4 breast cancer “I had no idea what it would mean to my life, my family and my friends. I thought stage 4 was like the rest of breast cancer. I soon found out I was very wrong. Metastatic disease is not at all like the other forms of breast cancer–this is the life changing, all encompassing kind, where you will be treated for the rest of your life. What it means to me is a cessation of my normal activities and spending most of my time either sick, in treatment, learning about the disease, mourning lost friends, or talking to women who have mets. The enormity of the prognosis can’t really be understood unless you live it. Every day for me is a blessing and every event, no matter how small, is a big event. I have learned to deal with a lot of pain and I try to be a “happy patient” at chemo–it makes it much easier. And, easier is what I am looking for. I know I have survived a long time with mets and have learned to make treatments and anxiety a part of my life. A mets diagnosis means change, adapting to things I never thought possible and looking at things from a new perspective. For me, it’s the fight of a lifetime.
