National Cancer Survivors Day things everyone should know about survivorship!
Today is National Cancer Survivors Day. I have cancer for the 4th time in almost 9 years so let's celebrate me (hooray!) and everyone else surviving (double hooray!) by educating the rest of you "normals" a bit
- •Survivor forever!The day you are diagnosed with cancer you become a cancer survivor - forever until you're dead. People like me who currently have cancer are still survivors.
- •Medical research doesn't focus much on survivors yetCancer survivors are living longer (hooray!) & we need to better understand and learn from survivorship from many research points of view (medical, psychological, sociological, economical, policy, etc.). Cancer survivors are key subjects because of what they might tell us about the human experience overall. New research holds keys about financial toxicity, improving treatment and care, unlocking the secrets to human resilience, understanding human relationships through hardship, etc.
- •Most doctors and hospitals don't focus much on survivors yetThere is a real feeling that once your active treatment is done, you aren't very interesting anymore. There is very little talk when you are actively making cancer decisions about the long-term or permanent side-effects after treatment is over. For many of us these include things like infertility, neuropathy, swelling, incontinence, joint problems, hair loss, PTSD, depression, and weight management challenges. Quality of life after cancer needs to be a medical priority and topic of discussion!
- •There are some AMAZING nonprofits that do focus on survivors and life after cancer!My favorite is First Descents! They focus on young adult survivors and this is a picture of me learning to whitewater kayak with them (hard to see my boat for the rapids!). This experience with other survivors like me changed my life! Also check out the Cancer Support Community and Gilda's Clubs, Stupid Cancer, the Samfund, and others! Please consider supporting these orgs to help improve survivorship!
- •Cancer can be a terminal or a chronic illnessSome types of cancers still kill very quickly, many now have high survival rates with relatively little physical after effects, and some survivors live with chronic illness and multiple recurrences. Chronic illness sometimes involves the inability to work or keep a job and it effects families and caregivers tremendously as well.
- •Childhood cancer survivors face unique challengesSince 1970 hospitals and researchers like St. Jude have helped improve childhood cancer rates dramatically. While there are still some childhood cancers that desperately need better research and treatment, there is also a growing need to understand survivorship. Many childhood cancer survivors face unique challenges with things like risk of secondary cancers, PTSD, infertility, and the permanent effects of very powerful drugs used in treatment when they were just kids.
- •Young adult (18-40) cancer survivors face unique challengesIt's really strange to get cancer as a young adult. It's the time in life where everyone is getting their careers going, finding significant relationships and marriages, hopefully having a lot of sex, and having children. Having cancer during these years means you are taken out of the game right when things are getting serious. Everyone expects you to be healthy at this age and your parents aren't taking care of you anymore. It can be uniquely devastating in so many ways.
- •Financial toxicity is one of the biggest challenges in survivorshipMany of us who are survivors are broke at least for a while. Even if we were very successful before cancer, getting back what you've lost can be impossible. You've lost time, you have holes in your resume that some perceive as weakness, you still have bills. The cost of cancer is so much more than just medical bills (which can be huge!). It's also things like travel to doctors, costs to make your environment more supportive, expensive health food and fitness, sometimes divorce (sad but true).
- •Many survivors need support most when their active disease is goneIt can feel like everyone cares about you during treatment or just after a surgery, but then suddenly all the support disappears. This can be especially challenging for someone who is still exhausted and depressed and returing to work, but is no longer getting help with meals, or rides, or help with the children. Often the cards and phone calls stop suddenly too. Love us through it and hopefully soon we'll finally be able to return the favor x2!
- •Give some love to a survivor today, and tomorrow, and always!Your continued support and encouragement means a lot to us! There is also so much you can learn from a cancer survivor! At some point in your life you or someone very close to you will probably have cancer and we will support you! Shared struggle is a great connector for all of us! Thank you as well to all the caregivers!