For someone with cancer, the word elicits images of exultation, relief and celebration. But for most childhood cancer survivors, “cure” is not the end of the journey.
When I completed Hodgkin lymphoma treatment at St. Jude Children’s Research Hospital, I thought, “This will be great! I’m done.”
Reality hit when I returned for follow-up appointments in the After Completion of Therapy Clinic. That’s when I truly comprehended the long-term side effects of the treatments that had saved my life. These include neuropathy; cold sensitivity; issues with my thyroid and esophagus; a high risk of breast cancer and heart problems; and poor lung function — an unwelcome surprise for a former competitive runner.
How would I maintain my health after leaving St. Jude?
Unfortunately, many clinicians don’t understand the health implications of childhood cancer treatments. St. Jude prepared a summary to explain the therapy I received and the tests I needed based on my risks. That survivorship plan is one of the most important documents I own because it helps me navigate the real world.
Sometimes health care providers would listen to me and follow the testing schedule; when I encountered those who would not comply, I learned to move on. With time and persistence, I assembled a health care team I trust.
Many people have said to me, “I had no idea that being a cancer survivor was so involved. I thought once you were done, you were done.”
As a result of those comments, I am motivated to spread the word: The long-term effects of cancer can be scary, but patients, providers and the public need to know about them and face them so that we can maintain survivorship.
Occasionally, people will say, “Oh, I bet you wish you had never had cancer.” Well, of course there would be parts I would change, but if I hadn’t had cancer, I wouldn’t know how great St. Jude is. I have many long-term effects of treatment, and they will always be a part of me. Yes, my cancer experience defined my life, but I wouldn’t change it — because it is my story.
From Promise, Summer 2021