One of my survivors described it so eloquently: “when I was in cancer treatment, it felt like a maze, but someone was always holding my hand, leading me through. When I finished, it’s as though they opened a door to an endless open field. There was no one out there and no path. I had no idea which way to go.”
It’s all too true that cancer survivor care is hit-and-miss at best. I have yet to hear a survivor say that when treatment was done, she was offered a comprehensive survivorship care plan to help return her to physical and emotional wellness.
A first step towards creating such a plan would be to ask and document what you need. Unmet survivor needs is a hot topic of current research. But it could be many years before this research makes its way from the ivory towers into a care model that makes a difference for survivors. In the meantime, there’s an opportunity for you to make a difference.
One of the aims of the Cancer Support Community (CSC) is to promote a “transformative model of healthcare that puts the patient experience at its center”. The CSC’s research arm recently published “Elevating the Patient Voice”, a report of information collected directly from cancer survivors about their experience and their needs. What’s remarkable is that this project isn’t taking place in a rarified academic setting; it’s an open registry that any survivor can participate in online. This is a remarkable opportunity for any survivor – including you – to make her experience known to a team ready to put that data directly in the public eye.
Cancer survivors are a large and fast-growing group: over 14 million in the US alone. If even 1% of survivors spoke up through this Cancer Experience Registry, that number would far exceed the power of any research study. Imagine the impact the sum of those voices could have to transform survivor care.
Your experience could make a difference to other survivors. Will you speak out?
DJ Mann says
I’d love to part of the survivor group:)
drshanifox says
Go for it, DJ – it will be such a blessing to other survivors! Follow the Cancer Experience Registry link in my blogpost directly to the registration site.
Susan pallinger says
I would love to learn more about it !
drshanifox says
Wonderful, Susan! Just follow the Cancer Experience Registry link within the blogpost, and you’re there!
sandy massey says
I want to join. I’m a survivor of leukemia and had a bone mania transplant. I believe I got thru it mentally pretty good. Physically it was extremely hard. Now it’s mentally hard with the change and physically bearable.
drshanifox says
Thanks for chiming in, Sandy, and congratulations on making it this far! By all means join the registry – other survivors will benefit so much from the sharing of your experience (just follow the link in the post.
I’d love nothing more than to see you be able to move from the place that’s “mentally hard” to a place of greater freedom and calm. If you’d like to explore that further, I invite you to contact me at drshani@drshanifox.com. We can set up a complimentary call to look at where you are, where you’d like to be, and how to get you there!
Blessings,
Dr. Shani
Eileen A Kaplan says
Hi Dr Shani Fox,
Hope this note finds you well. As you know I have that fabulous interview I had with you on my website! I love that interview. And we had such fun recording it. This coming week I have been invited to interview on a special program by the Hartford, CT Foundation For Giving. The program is “Words to give by.”
I am hoping it will be one of the interviews to be selected to run on national NPR. Will keep you posted! As usual, all my best Eileen A Kaplan
Adrea Brier says
Thanks so much. We must present ourselves as no official body is yet tabulating the survivors, so a site such as that is invaluable and critical…..if our privacy is protected and it’s “pirate proof”. My computer sent me a message saying it wasn’t a safe site, so please advise.
Also, as a multi-time cancer conqueror and cancer consultant, I personally find term “conqueror” more empowering.
Adrea Brier C.N.H.P., J.S.J.
ThrivingHealthAndWellness.com
Cancer Conqueror, Writer, Speaker
drshanifox says
Sorry for the delay in my response, Adrea – I was on a much-needed R&R break following the Appleseed conference. It was nice to meet you there!
I just revisited http://www.CancerExperienceRegistry.org, and confirmed that the site url begins with https, which means that it protects information security. This was also true of the registration pages. Make sure you’re accessing a url that begins with “www”. If it has any other letters in front of it you may get a warning – just exit and retype the “www” url.
I’m glad you’re inclined to register, because your experience will be a valuable part of this database. I hope you’ll encourage your clients to join as well.
And yes, “survivor” is not an ideal term to describe those on this hero’s journey. I use it in order to have a common language with the medical establishment, and because it’s easily understood by large groups. But I love when individuals claim terms like “thriver” or “conqueror” as they embody the blessings of their experience. Happy that you number yourself among the conquerors!