Life After Cancer: We All Need a Survivorship Plan
I feel funny saying anything negative about the cancer center where I was treated. After all, thanks to the care I received, I’m still here after two relapses and a rare fourth stem cell transplant 10 years ago.
But I do have a few things to say about my life after cancer.
Why I needed a survivorship care plan
These days, cancer programs are required to have survivorship care plans, but back when I was diagnosed in 2003, that wasn’t the case. My depression when I went home after transplant might have been eased if there was a plan. They took good care of my physical problems, but the psychosocial issues not so much. There wasn’t a plan for how to cope with all the challenges I faced, just a visit with a young psychiatrist who yawned while I talked.
Finding a social worker that I loved
Then there was the problem with the social worker swap. I got extremely attached to a social worker who was a life-saver for me during treatment. She knew the right thing to say, always ready with a story about someone else who had gotten over the same hurdles.
During a reorganization, the powers that be said I had to switch to a different social worker. We weren’t a good match. I actually wrote a letter to the chairman of the cancer center. I told him that they took good care of the body but not of the soul. He arranged for a phone call with the head of social work. I said I had a long-term relationship and a special bond with the social worker I had.
Switching to a new social worker
No dice. I had to switch. I met with the other social worker. She said she would come sit with me during a procedure I was to have. She didn’t show up. Then she got another job without even telling me.
On paper, I have another social worker. But after seeing her once, I said I didn’t want to see her again. The first time we chatted, she asked me to tell her what my transplant was like.
I wanted to yell, “READ THE CHART, I had four transplants, not one transplant!”
Am I too healthy to see a psychiatrist?
I had an appointment with another psychiatrist. She said the institution doesn’t have enough psychiatrists to go around, and I was too healthy to see her. I wouldn’t have asked to see her if I thought I was too healthy.
Luckily, I have a nurse practitioner who covers many of the bases. A friend said, of my NP, “She’s like a whole survivorship program packaged in one person!”
She calms me down, answers my questions, points me in the right direction, runs interference, and is the go-to person when I’m in a bind.
And I’m lucky that a primary care physician – also an AML survivor – is on a mission to provide survivorship services in Western Massachusetts (where I live) and in Northern Connecticut.
Finding support from support groups and conferences
Jay Burton, along with nurse practitioner Kara Sawyer (also a leukemia survivor) from Dana Farber, formed a blood cancer support group in 2015. In the years that followed, he started support groups for survivors of other cancers and formed a non-profit called Survivor Journeys. This is the second year he has presented a conference, “Cancer Survivorship 101.” The day-long event included presentations on such topics as juggling your healthcare after treatment ends, fear and anxiety of cancer recurrence, and changes in sex and intimacy after a cancer diagnosis.
When I dropped in to the blood cancer support group and attended the conferences, it was good to be with people who understand.
Did you ask yourself "why me?" when you were first diagnosed with blood cancer?