I have been in some serious, and super unhealthy, denial for quite a while regarding my cancer.
I have advanced cancer.
Even further, I have stage IV cancer.
I have a primary diagnosis of stage 1A breast cancer, that I am now cancer free of. Best. Feeling. Ever.
I also have a secondary cancer diagnosis of stage IV endometrial carcinoma, that I am also cancer free of. Better. Feeling.
But why does that mean end of life? Why does every google search for stage IV cancer survivorship result in the 5 Stages Of Death & Dying. Don’t get me wrong! There is incredible information on the topic and it’s super important to accept those Elizabeth Kubler-Ross’ stages for any “death” situation. End of marriage, end of friendship, loss of a pet, loss of a job. But don’t automatically assume that because I have stage IV cancer I am actively dying! I’m absolutely not! Everywhere I search, its being beat into my head that my life is over. F*ck you, it’s not the end of me, yet! Stop rushing me down a 6′ hole. It’s hard to keep fighting when everywhere I look, I’m being coached on how to deal with the end of my life. If those books and google searches came up with nothing but that sh*t thrown in the face of a newly diagnosed patient, you’d have a lot bigger mortality rate due to new fighters giving up.
I’m still coming to grips with having advanced cancer and the gravity of how huge and overwhelming the life-long treatment is to just keep me alive and free of disease. When I start the scans, tests, procedures, and so much more, just to figure out the next step to go, it’s horrible. I’m on my first bout on this advanced cancer “merry-go-round of nightmares” since admitting I’m not going back into active treatment, and it’s terrifying to think of how huge of an ever-changing entity. I don’t know which way to turn, how to deal with the magnitude of all this, or even where to find situation-specific help.
Where’s the book for me to help me navigate this journey? Where’s the comfort at 2am? Where is everyone when you know everything is just a bandaid to keep me alive for as long as possible? Why is everyone giving up on me?!?!?
It’s incredibly depressing and a spirit killer. I need to fight with everything I have to stay healthy and cancer free for as long as possible. Then, when it does come back…and if I’m going to be honest with myself, it will…how do I put that foot back on the path and find a completely new normal? Over and over again. I have so many of the books on dealing with chemo side effects, learning about what my next step is no matter what type of cancer, what to expect after a mastectomy, and ways to help me bounce back with anti-cancer diets and ways of eating and beating this bs. These are all wonderful resources, but it’s cutting out an ever growing group of survivors. The lifers. The survivors that are just that…surviving chronic cancer one stumbling foot at a time.
Don’t ignore stage IV. Don’t give up on us. Don’t inundate us with never ending cycle of information on preparing our bodies for the grave. And for f*ck sake, don’t tell me “there’s nothing else I can do”. That’s the quickest way to find yourself with a hard throat punch.
I’m not actively dying. Stop treating me like I am and give something I can actually use.