A Cancer “Roadmap” for Patients, Caregivers and Survivors

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Cancer is such a vast and varied subject that there are tens of thousands of books out there on every aspect imaginable (search Amazon books for “cancer” if you have any doubts).

But Kim Thiboldeaux saw the need for a comprehensive, compassionate and authoritative guide to cancer, almost like a travel guide. It would cover everything from diagnosis to treatment, survival and end-of-life issues. It would have lists, worksheets, recommended resources, and readers could skip, read a chapter here or there as needed.

This was the genesis of Your Cancer Roadmap: Navigating Life With Resilience.

For Thiboldeaux, a self-proclaimed “Philly girl” who grew up in Olney, the 287-page book was the culmination of her two decades at the helm of the Cancer Support Community, a global nonprofit that provides $ 50 million each year. dollars in free cancer support services. patients and their families. CSC has 175 centers, including two in Philadelphia and, in large part thanks to Thiboldeaux, one on a Navaho reservation.

Along the way, Thiboldeaux became so knowledgeable about cancer – a “thought leader” – that she was sought out as a counselor. She has been part of initiatives led by Stand Up to Cancer, the National Institutes of Health, and the Joe Biden family, to name a few.

First Lady Jill Biden wrote a preface for Your Cancer roadmap, noting that she and Thiboldeaux are both from Philadelphia, both one of five children, and both avid Eagles fans, as well as cancer activists.

“A cancer diagnosis is a gateway to a complicated and foreign world. Patients and their families must navigate complex insurance and payment systems, learn obscure medical terms, defend their health and have difficult conversations with the people they love, ”Biden wrote. “And they have to do everything without a road map or guide to show them the way. Until now.”

Thiboldeaux had the benefit of tapping into CSC’s online educational series, Let’s talk frankly about cancer.

Some of this reused material may seem like pablum to discerning readers. “Ten tips for living well with cancer”, for example, includes “Be your best advocate” and “Stay hopeful”.

Overall, however, Thiboldeaux does a masterful job of explaining complicated and intimidating topics in layman’s terms and then listing resources for those who want to dig deeper. Among the topics: health insurance and financial toxicity, clinical trials, the difference between genetic and genomic testing, and advance directives.

“I wanted it to be grade 6 to 8 reading level,” said Thibodeaux, who is now CSC executive chairman, on the board. “I also limited the chapters to only about eight pages. They are short and you don’t have to read them in order.

Six of the 29 chapters are devoted to recognizing and managing the emotional and psychological disorders of cancer, including depression, loneliness and fear of recurrence. There are also short personal essays from cancer survivors, including TV host Joan Lunden and ESPN reporter Holly Rowe.

Thiboldeaux’s encyclopedic approach does not shy away from subjects that are difficult to tackle. The chapter on end-of-life issues includes a list of questions to ask your insurance company about home health care and palliative care. The chapter on sex and intimacy states that sexuality remains neglected in cancer care, so “you will probably have to assert yourself to find good (sexual health) care.

Your roadmap against cancer ends with an essay by neurosurgeon Joseph Stern, author of the book Grief connects us. He says he used to “keep my distance from patients”, until the loss of his sister and husband to cancer “reshapes my appreciation of the liberating powers of grief and compassion. “.

“With the coronavirus pandemic, grief and loss has touched us all,” Stern wrote. “Although transformative, the grieving process is painful and disruptive; I don’t wish it on anyone. Once through it, there is no turning back.


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