Before I begin, I need to make it clear that I am by no means an expert on survivorship plans. In fact, even though I subscribe to email updates from the National Coalition for Cancer Survivorship, Livestrong, and Triage Cancer, among others, I just began, in earnest, thinking about the necessity of having a survivorship plan only a week ago. At a myeloma support group, we had a speaker talk to us about needing a survivorship plan. I followed this up with a discussion with my doctor and someone at the Leukemia and Lymphoma Society.
What is a survivorship plan, anyway?
It’s important to note that we are all survivors from the moment we are diagnosed with cancer. The impact of the diagnosis is not just physical, but it also effects our emotional state, finances, career, relationships, and our overall health and quality of life. A survivorship plan is a living document with the first version, ideally, coming early in the journey. It’s basically a roadmap for navigating through all the challenges before, during and after treatment. For those in remission, the plan provides information on what sort of follow up appointments or tests will be necessary, as well as what resources are available. When I was diagnosed with myeloma, it was a huge challenge to identify where I’d get help with nutrition, emotional support, financial assistance and other doctors I would need. I didn’t have a road map. My hematologist and myeloma specialist were focused on the cancer itself and weren’t completely available to help with this navigation.
At the recent support group meeting, we were told that we as patients should do our survivorship plan, with input and information from our medical providers. But when I look elsewhere on the subject, some suggest your primary oncologist should put the plan together. In talking to my Dr., the other day, he suggested he can provide the medical history and data about my diagnosis and various treatment regimens, but otherwise I’m best positioned to put together a comprehensive plan. Fortunately for me, my wife is a copious note taker and can go back and tell me what happened when and who we saw. My Dr also pointed out that as a myeloma patient, I’m always doing treatment (currently maintenance) and monitoring all aspects of my health and well-being, so as a plan for going forward after remission, it’s not as big an issue for me.
Why I need a plan now
But as I think about it, I do need a plan. I am picturing a binder with various information about my cancer journey; doctors, treatments, side effects, resources. As my chemo brain intensifies and as I live longer with the disease, I need this binder. And that’s another thing, we are living longer with cancer, so having a road map of where we’ve been and where we are going, is even more crucial.
In summary, and as I indicated in my first sentence, I’m not an expert. I’m just learning about survivorship plans. But I know enough to suggest you speak with your doctor about a survivorship plan. If nothing else, it will help you think about what you need going forward. And take a look at Livestrong and Journey Forward, which both have templates for survivorship plans. There’s no right or wrong way in doing a plan, but having a plan is important.
What type of blood cancer are you or your loved one diagnosed with?