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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Ann Harper moderator
    1 week ago

    @ronnigordon its absolutely important to surround yourself with people that can help your mind, body, and soul. I’m glad you found your place with a few special people.

  • Daniel Malito moderator
    2 weeks ago

    @ronnigordon Unfortunately, your story is not unique. I’ve heard too many patients have similar experiences with – and I’m being generous here – medical professionals who phone it in. From an old payphone. On Mars. It’s a shame that even when you find someone you like you can’t stay with them. Well, if nothing else, at least you know all of us here get it, and you never have to be alone if it comes to that. Keep on keepin’ on, DPM

  • Susan Gonsalves moderator
    2 weeks ago

    I like the sound of the support group but unfortunately there is not one available at the hospital where I’m treated. My primary did recommend a psychiatrist following my diagnosis with CML in the early days. My first visit. “I’d be depressed too. Wow. Your life is a mess. I’d go home and eat a lot of chocolate if I was you.” Visit two: (a lot of complications with stomach, weight, skin issues, side effects). “It just gets worse and worse. You need a big bottle of wine. (So I refer to her as the “chocolate and wine” shrink and one visit after that , I was done. Maybe one day I’ll find someone who is more understanding and helpful.

  • Ronni Gordon moderator author
    2 weeks ago

    That’s awful! I don’t know what’s up with these people. I don’t do it anymore but when I was first diagnosed I tried the Leukemia and Lymphoma Society’s chat groups. Sometimes it was helpful. Have you looked into it? They have one for CML. https://www.lls.org/support/online-chats#Living%20with%20CML

  • Ramae Hamrin moderator
    2 weeks ago

    Since my diagnosis, even though I have seen a cancer center social worker, I have found the best support from people who have been through it. The support group you mention here sounds wonderful! I had a friend (liver cancer/transplant) who had the same issues with his psychologist at Mayo. He was switched between psychologists after already building a rapport with his first one. He had to repeat the story every time with each new one and began to feel very uncared about as a person and a patient. I think hospitals have a long way to go in addressing the psychosocial needs of cancer patients, especially after difficult procedures like transplants. Thank you for addressing this here. I can’t imagine four transplants!

  • Ronni Gordon moderator author
    2 weeks ago

    Thank you! Sounds like your friend went through something similar. It’s good to hear I’m not alone, at least!

  • Yolanda Brunson-Sarrabo moderator
    2 weeks ago

    Yes, there’s something to be said for clinics/ hospitals that don’t have all there duck in a row, leaving many of us stuck in the trenches. I believe attending these conferences and meeting patients and doctors help tremendously in relatable conversations. Sometimes finding answers is not the normal process, we have to do a bit more groundwork in finding the proper care, and people with softer touch.

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