I’m all done. I rang the bell; I had my picture taken reluctantly. Who wants their picture taken with beard-like hair and no eyelashes or brows? No more chemo, radiation or even Herceptin. My port is out, and my mastectomy scars are healing nicely. Why do I feel so alone? I feel like I was dropped off a bridge or like the bird pushed out of the nest and told to fly or not…???
I wandered around for at least 2 months thinking my life would bounce right back to what it was before cancer. I tried to get back into my daily hot yoga, my normal 6 am wake up to get my day started and cooking again with at least one gourmet meal a week for my husband. Not so good. I made it through half of the hot yoga class which I determined is worse than any chemo side effects right now. I have not yet accomplished the 6 am wake up, I am finally rounding about 7:20 am and fully functioning by 9 am (which is huge), and food, well, that is a whole separate blog in itself.
To my friends, I am done, and they all want to know how I feel. Freeing? Joyful? Successful? Unfortunately, I feel none of these and I also feel bad that I don’t feel any of these. I should be eternally grateful, delighted and strong but all I feel is tired, empty. I no longer have my Firefly sister, although I am sure if I called, she would be willing to assist. I feel terrible that I don’t feel that way and I also feel like I can’t tell anyone either.
Welcome to the afterlife or the life after cancer. But is it really after cancer, can I even say that? Am I really free of cancer? What can I say? Am I cancer free? I believe I am according to my oncologist but until I pass the 5-year mark according to the American Cancer Society, only then can I say I am cured. So, for now I don’t know what I call myself.
After weeks of wandering through that desert, I have decided to refer to myself as a Survivor. That’s what the big societies call us, and it has all the qualities of strength I need. Accordingly, the Survivor definition #1 is a person who survives, especially a person remaining alive after an event in which others have died, (kind of gloomy, I know) and definition #3 is a person who copes well with difficulties in their life. Cancer qualifies as a difficulty in my book.
I am going with #3, copes well with difficulties. But even us survivors need help. Out here without doctor appointments, regular visits to the infusion or radiation center, my support system has all but disappeared. Now what?
After having a discussion with a group I was fortunate to join, a Compass group, I discovered many of my fellow survivors felt exactly the same. We met for dinner and exchanged ideas about other support systems, where to look, what was good and what was just written information etc. We call ourselves the “Pearls” because we come together with individual pearls of wisdom about how to get through this next phase. We discussed ideas and all went away with action items and things to consider.
My task was to see if I could collect resources for the supporting-after or survivor cancer life into one place. I got started and was overwhelmed. It helped me see that the support really was out there but also how odd it was that the link between when you are done and when you find these things is broken. Or is it?
Some survivors get a letter about follow-up resources that are “here for you.” Some of us don’t. I asked my oncologist about follow-up and she very honestly said, “I don’t do that, so maybe my nurse practictioner can help you.” Really? Was that it? So I volunteered to become a Guide for Firefly Sisterhood. Many of you know about Firefly as they have completed over 1,000 pairings between women recently diagnosed with breast cancer and inspirational, trained survivors. This training was excellent and became an additional resource for me: more women to discuss life after cancer, more resources to tap and more support in my journey. This was good news but clearly the same gap still lingered. They too experienced a lag in support from completing treatment and volunteering with Firefly.
The good news is that the resources available really are spectacular:
- Casting for Recovery is a free fly-fishing weekend for breast cancer survivors every fall, no experience or gear required! Sign up is by email at email@example.com and is on a first come first serve basis. Read more about it from Firefly’s blog HERE.
- There are several retreats and bed and breakfasts that offer discounted weekends just for breast cancer survivors: Priceless for Purpose, offering bed and breakfast to cancer survivors in Pequot Lakes, MN, was featured in a Firefly blog HERE; First Descents, in the Twin Cities, offers adventures for young people with cancer and was featured in a Firefly blog HERE; Send Me On Vacation offers vacations to breast cancer survivors in warm locations and was featured in a Firefly blog HERE; Breast Cancer Recovery offers Infinite Boundaries retreats in the Wisconsin Dells resorts.
- Susan G. Komen affiliates are numerous and include a helpline 1-877 GO KOMEN (1-877-465-6636) that is free. They also have message boards and support groups. Involvement with their annual Race for the Cure on Mother’s Day puts you in contact with thousands of breast cancer survivors who may know of additional resources.
- Gilda’s Club Twin Cities supports all cancer types, with programming specific to women, men, caregivers, and/or families. They provide support groups, classes, even a yoga class that is just my speed (listen to the interview with Gilda’s Club Yoga Instructor, DeAnn Hoff, HERE, or read about it HERE).
- There are local groups that grew organically. Comfortclub in Edina is one of them, with a Christian focus (firstname.lastname@example.org).
- There are national organizations: Cancer Care, Cancer Hope Network, Women’s Cancer Network.
These are just a few of the resources available to us. Many of them I discovered by following Firefly Sisterhood on Facebook and reading their daily breast cancer related daily posts and blog, and some from my Firefly sisters and Compass colleagues.
Additionally, what I found was that the more I volunteered at Firefly, the more resources I uncovered. So is the magic volunteering? Or is the magic just getting involved with one of these groups and meeting other survivors?
Why do some of us get information about these resources and some don’t?
I don’t know the answer to that. What I do know is we are just like the baby eagles in the nest, chemo and radiation and even surgery tore our nest away, bit by bit until there was no nest left and we are now forced to fly. So we can either jump and find a support through one of the above resources or we can have the nest completely stripped away until we free fall into one of these or attempt to go it alone.
I say fly ladies, stretch out your new wings and you will find lots of us new and old birds out there that want to fly with you. Call us, come see us, write us, we have all come out of the same nest! Trust me: it really does feel better out here!
Do you know of other local and national resources for women facing and living with breast cancer? Email Firefly with your suggestions so we can update this list!
Written by Linda, Guest Blogger. Linda is a 2 year survivor of triple positive breast cancer. She is a full time medical writer and resides in Maple Grove.