From Centre Daily: “This compelling work questions what it means to “cure” disease and should be of interest to the medical community, cancer survivors of all types and those who face medical symptoms that cannot be validated by traditional means. These authors are marking a new developmental phase of cancer care that may lead affected persons to seek partnership with their physicians to combat the long-term side-effects of cancer and its treatments.”

Oncolink did a lovely review.

And here’s one more from the Feminist Review.

Breast cancer awareness month, also known as October, came and went with scant attention paid to a new, groundbreaking book: After the Cure: The Untold Stories of Breast Cancer Survivors by Emily Abel and Saskia Subramanian. Then again, stories of women coping with life-altering, post-treatment maladies have remained “untold” for a reason. As Abel, a professor of health services and women’s studies at the University of California, and Subramanian, a sociologist at the UCLA Centre for Culture and Health, point out, the topic runs counter to the “celebratory breast cancer culture,” one filled with inspiring narratives of good health and spiritual rejuvenation.

That wasn’t Abel’s experience after radiation and chemo for breast cancer in 1993. Her doctor told her recovery would take a year; to this day she still suffers from fatigue. She began noticing a “cone of silence” around the subject of health when talking with other survivors: “Everybody was supposed to say ‘I’m fine, I’m great’ and of course we were fine—those of us who survived were really very lucky and we did consider ourselves fine. But we began to realize we also had other problems that no one was paying much attention to.”

Thanks!

reeldoctors.org

I lost my hair for only about six months, gained 40 or more pounds even on a low calorie diet and began to drink too much too frequently, but I came back and I came back a better person.

Educating myself about cancer, especially about nutrition and vitamins, journaling constantly on my typewriter and tearing up my writings the next day after reading them allowed me to release some anger and see my concerns more objectively and consequently relieved some stress. I had been a part time writer and photographer but stopped working because meeting the public was too difficult on chemo. I managed to write research articles for other publications free which boosted my morale.

A year after chemo I started about four years of weekly psychotherapy. I gave up drinking almost immediately and began going not to AA but to Alanon meetings because other people’s drinking really began to bother me.

I combined my own extensive study of drinking while also joining a very concentrated, 12-week program in a family alcoholism training program in a rehab center in a large hospital. My understanding of relationships and communications, especially when influenced by addictions, grew tremendously. I learned an entirely new philosophy.

I also joined a gym and worked out at least 3 days per week. All these people in these programs became my support. Having had a daytime job prior to cancer I had cultivated no real daytime friends apparently.

After I left my therapist I had a couple of lunch dates with her and saw her professionally a few times. She said I had truly changed, which I believe. I learned to protect and value myself, to express my feelings until I could release most of the bonds of anger, anxiety and sense of injustice that gripped my core. Never drinking and avoiding tranquilizers or anti-depressants allowed me to feel these body cues and work on the negative feelings until I resolved them.

I think all of this must have been a large part of my recovery and allowed me the privilege of living so healthy and continuing to grow in so many ways all these years. None of this was planned ahead of time – ideas and opportunities just flowed my way and I heeded them. This is as close to spirituality as I come. I shall be 80 next month.

A professor and an assistant research sociologist, respectively, at the University of California, Los Angeles, Abel and Subramanian speak with scores of breast cancer survivors to explore, in depth, the post-treatment symptoms caused by radiation, chemotherapy and surgery, “giving voice to a neglected aspect of the breast cancer experience.” The women talk with Pat Garland, for example, whose treatment left her with several debilitating symptoms, including chronic joint pain in her arms and legs, that her doctors dismissed: “there was no validation… They saved my life, but then the value of my life after they saved it with the chemotherapy was zero.” The authors hear similar stories from other women such as Ida Jaffe and Leanne Thomas, whose post-treatment symptoms include “hot flashes, dental and vision problems, insomnia, memory loss, fatigue and depression.” With cogent, compassionate analysis, Subramanian and Abel (herself a survivor) remind us of the lasting effects of cancer diagnoses, and the tremendous work still ahead for patients who must learn to trust their gut, and doctors who must learn to listen more considerately. (Nov.)

Click here to watch!

From Paulette:

I am a survivor of cancer and all its mired treatments however getting through all of the ongoing crap that goes with the post-cancer period is really what I consider surviving this disease being all about. It is always so confusing and frustrating to have “successfully completed treatment and survived breast cancer” only to be saddled with other continuing chronic symptoms that never seem to dissipate and no one seems to acknowledge are truly real. Having people tell you how great you look but still feeling unwell convinces you that there must be something wrong with you. After all, every other survivor you read about is “getting on with life” and you seem to be stuck in a post-cancer time-warp. I’m slowly dealing with my chemo-brain symptoms, but I don’t know if I will ever reconcile myself to the loss of what I considered one of my greatest assets…my memory and the visual cues that accompanied it. I’m really happy that this research is finally getting out to the public. This information has been sorely needed and will benefit every survivor, whether they have post-cancer symptoms or not.

When I was ill, I had a small circle of people that knew. I got so much from people. It was truly moving how people were there for me and my family. I’ve always been someone who felt this way, but it was so underscored that just really, what life is about is human connection. I really witnessed firsthand the power of kindness, and it really changed me. Not that I wasn’t a kind person before, not that I didn’t value relationships, but it was really a profound experience being a recipient of that. Ever since I’ve had cancer, really all I’ve wanted is to give back. I think cooking is part of that, giving food to people. And not just making it slapdash, but making an effort and putting something of myself into it. It’s more of an offering that way.

Like many African American women, Ida Jaffe framed her transformation in religious terms: before cancer, “my life was on a fast track of shopping and me. It was all about me. I never took the time to call people. I wasn’t a caller, just talk to people to see how they are or what’s happening in your life. I was never that kind of person. It was all about me.” But “God saw something in me that he wanted to change. He had been telling me to change, and I wouldn’t change, and so he gave me time to think about it and make a change in my life and make it for a good thing. Now I’m able to see and help other people, but before this I wouldn’t have taken the time of day.” When her mother fell ill, Ida was able to help:

I think this was one of the greatest things that came out of me having cancer. My mother was diagnosed with cancer four years after me. I was able to mentor my mother. Even saying it was my mother, I don’t think I would have taken the love, time, and care to actually take care of her. I moved back to Ohio and lived there for two years to take care of my mother. She was diagnosed at ninety years old. I took care of her for two years, and I mentored her through her cancer, and she eventually passed away. I lived there and took care of her. Just to be with her every day and tell her, “This is what you’ll go through, and this is what you’ll experience.” She didn’t have the chemo and radiation because she herself decided against it. She was happy. She was OK with where she was. The cancer had metastasized throughout her body, but yet she was a happy person I think because I was there to say I’d been there, done that: “These are some of the things that you’ll go through.” Had I not had cancer I couldn’t have done that. I tell people that your mother is your trainer through all of your life. You learn the most important lessons from your mother. I had the joy of my mother birthing me, leading me through life, but in the last stages of life, my mother taught me how to die gracefully. That was the biggest lesson for me.