By Ronni Gordon · January 9, 2020
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.