Today I run across a couple new 3-minute web videos on the Lymphoma Research Foundation website. Several of them seem more or less made-to-order for my situation.One focuses on twenty- and thirty-somethings with indolent lymphoma. I don’t fit that age category, of course, but I’m still younger than the average lymphoma patient. It’s a pretty good discussion on indolent disease, and how different it is, conceptually, from other cancers:
Click HERE.
Another describes the Watchful Waiting approach to treatment:
Click HERE.
“That’s one of the differences about indolent lymphoma that’s difficult for people to get past,” says one indolent lymphoma survivor on the Watchful Waiting video. “It’s always a present tense.”Indeed it is. Other cancer survivors are either in treatment, or in remission, or they’re cured. They get some sort of resolution eventually. We indolent lymphoma survivors live in an eternal present.
The trick, I suppose, is to find some way to get our future back again, to escape that eternal present.
4 comments:
Hi Carl,
While awaiting results of my bone marrow biopsy, I am trying very hard to remember that all I can do is live for today. Thanks for the reminder.
Although watchful waiting is a term applied to living with indolent lymphoma, learning how to wait gracefully is also a task for survivors at various points in their "career" when they're waiting for test results. It's hard to keep your anxiety level in check while waiting!
well i am awaiting results
Dear Carl,
You know I enjoy and appreciate your blog, so my comment today is posted with all due respect.
You wrote, "Other cancer survivors are either in treatment, or in remission, or they're cured. They get some sort of resolution eventually."
Actually, survivors with many other types of cancer also live with great uncertainty for the rest of their earthly lives: Patients with types of cancer that have high rates of recurrence once remission is achieved. Patients living with currently incurable metastatic disease. Patients living with their original cancer in remission, but with serious long-term effects of treatment (such as graft-vs-host) or with high rates of developing serious late effects.
I mention this because I know how it helped me during my early years of repeated recurrences to be reminded that I was not the only survivor dealing with repeated recurrences.
The point of your post is still very useful: to live fully requires an ability to build a sense of future. In other words, to find hope.
With hope, Wendy
Thanks, Wendy. I hear what you're saying about survivors in remission who still live with a measure of uncertainty. I should have been more precise with my language.
Of course there's always the possibility of recurrence, even for those whom their doctors have pronounced "cured" (always a slippery term to use, in the world of cancer). The point I was trying to make is that living with a long-term, low-level remission - one that doesn't require immediate treatment and that can go on for years - is a sort of gray area in and amongst other categories that have more precise boundaries.
Therein lies the difficulty.
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