Your Cancer Survival Plan: “Life After Treatment” Programs That Help You Cope
Once we have been declared cancer free, we may think that we’re all done. It’s over. Yay, right? In a way, it is, but only one part of the journey. I know from my own experience, from having watched my father go into remission five times, and from the stories I’ve heard from other survivors that “surviving” isn’t an ending—it’s really a new beginning. After all, cancer leaves us with a body we no longer understand. We may have scars, missing parts, swelling, unexplained aches and pains, numbness, and fatigue. Emotionally we feel like we’ve been through a war. The rush of treatment is over and suddenly all the fear, sadness, and loss bubble to the surface. “Who am I now?” and “What just happened to me?” are some of the questions I asked myself after surviving cancer at 16 years old.
Fortunately, there is help. Many cancer centers, realizing that the struggle doesn’t end once the radiation stops, are creating survival programs that help people cope with the changes they face after treatment is over. The Cancer Wellness Center at Piedmont Health Care is one of them, helping survivors cope with programs like yoga, music and art therapy, social events, and massage. Doors are open to all cancer patients and survivors, no matter where they received treatment. Georgia Cancer Specialists, a Top 10 private cancer practice in the U.S., has implemented a “Life After Treatment” program to help patients cope with post-treatment doctor’s visits, tests, and concerns like fatigue and hair loss for months to years after treatment is over.
The Winship Cancer Institute is working on a similar program to offer follow-up care. They plan to implement a volunteer program that will match newly diagnosed patients with survivors, as well as offer treatment for the various long-term side effects of chemotherapy and radiation. “It is important to understand that it takes time to recover and adjust to life after a cancer diagnosis,” Winship’s site says. “Determining what is the new normal may take some time.”
The Nebraska Medical Center in Omaha, Nebraska offers a survivorship program that “helps address the physical and emotional challenges the cancer survivor experiences.” The Dana-Farber Cancer Institute in Boston provides the “Perini Family Survivor’s Center” to help survivors “access post-treatment follow-up care, including counseling and monitoring of long-term side effects of treatment.” They even include a specialized survivor program for children.
The list goes on. In fact, these programs are becoming so popular that you’re likely to find one at a cancer center or hospital near you. The point is that experts around the nation, from doctors to counselors to oncologists to survivors themselves, all realize that surviving cancer is a task best tackled with help and support from others.
“Far too many distressed cancer survivors are left to suffer alone,” said Mike Hobday, head of Macmillan Cancer Support. “It’s great that people are surviving cancer, but we cannot dessert them after their initial treatment is over.”
Fortunately, more survivor programs are in the works. Whether or not you have one available to you, realize that your journey doesn’t end when treatment stops. Seek support from counselors, support groups, nutritionists, massage therapists, acupuncturists, financial counselors, or whatever you need.
“Whether you are coping with the debilitating effects of therapy or you have no external physical evidence of the disease, research validates what you already know: cancer causes change,” writes Sherri Magee and Kathy Scalzo in Picking Up the Pieces. “Once your cancer treatments have ended, you face the challenging task of picking up the pieces of your life and putting them back together again.”
How have you coped with survivorship? Please share your story.
Photo courtesy roidinc via Flickr.com.
This really sums up the post-treatment feelings well. As one just entering this stage, I agree it feels somewhat daunting indeed at times. I really like your statement, “cancer leaves us with a body we no longer understand.” It really is a “new beginning” in so many ways and figuring out how to proceed is no easy task.
Thank you so much for sharing and commenting Nancy. I hope that the post was of some comfort and help to you. Please continue to comment and share your thoughts with us. Love and light – Britta
Thanks for sharing Iamstill ongoing chemo treatment I have five weeks left adn was looking for what what was next so this website has been very helpful as I think the next step is detox once the treatment is over and you folks have lots of info on that dn it sounds like this is a good source of all kinds of stuff to think about so thank you
Britta:
I’m a member of the Oncology Community Advisory Board at The Carol G. Simon Center at Overlook Hospital in Summit, NJ. Our main focus is creating a supportive community for survivors to help them continue healing beyond treatment and long into survivorship. From yoga, meditation, rehabilitative exercise, and so many other offerings, we hope that survivors will know that they are not alone just because their treatment ends.
Survival > Existence,
Debbie
I am 3 years out of treatment now and still trying to figure out what to do with myself. Everything is different, not just my body changes but how my mind works. The least little thing leads me to believe that the cancer has returned to a different location, I call it ‘canceritis’. Its hard not to be so scared having had such a close call the first time. After chemo, and mastectomy, then radiation and a year or so later reconstruction, its been a whirlwind of activity. Now that things have settled down to a dull roar I find myself wondering what I’m supposed to do now. I have been able to return to work, (nursing) which is good, but the chemo has changed my ability to think clearly all the time. I have to be extra careful when dispensing medications that I’m giving the right thing. I check and double check myself. Nothing will ever be the same, my life is changed forever. Along the way I’ve made a lot of new friends and they are a huge support system. We’ve all had cancer, we communicate daily online.
One thing I did recently for myself was to get my face make up tattoed on; I wish I’d have had it done years ago. I wake up looking at least a little bit healthy, not so washed out and scary looking. I wish I’d have had this when I was getting chemo, it helps to look in the mirror and recognize yourself at least a little bit.
I guess the best thing for us all is to be diligent in our daily lives, taking note of our new limitations and giving thanks that we are here to take note of the changes. So many have not made it this far. A day at a time is all we can do.
Marilyn
Hi, Marilyn. Thank you so much for sharing your story. It sounds like you’ve had three very stressful years. I’m not surprised that you are left with some symptoms of “chemo brain.” It’s very common. I hope you’re not too hard on yourself. I’m sure you are finding ways to cope such as writing things down and putting other aids in place to help, but I also understand the sense of grief and loss that goes with that. That feeling of, “I used to be so much better at this.”
After cancer is over, it’s natural to grieve over the losses we’ve experienced. Please be kind to yourself and allow yourself that space to grieve. Sometimes a journal, a collage, a garden, or other types of projects can help you actually put words or pictures to what you feel has been taken from you. Once you’ve completed these you may find it easier to accept where you are now and move on. I would recommend seeking out cancer retreats, or even just a retreat that sounds appealing to you, to really give yourself the time and space to relax into your new self.
Give yourself time to adjust, and realize that things are not going to be the same as they were before. They just aren’t. But once you can accept that, you can start to get to know the person you are now, and maybe you can discover some new dreams or goals you have that you’d like to pursue. Let this be a new chapter in your life where you are EXTRA kind and loving to yourself, and give yourself the space and time you need to cope. I wish you the best! Thanks again for writing in.
I was misdiagnosed when i first went to the emergency because of stomach pain i could not eat or drink anything without feeling really bloated and did not eat much.The Hospital gave me xrays and told me it was a gas bubble in my intestine i went back and forth for one Month the hospital kept telling me to take Gasx that did not worke my stomach started getting bigger and painful as the days went by so i decicded to go to another Hospital and they tell me that that so called gas bubble was a tumor that turned into Cancer.Stomach Cancer so surgery was done right away.I am now undergoing Chemo Therapy 1x every three weeks.The very first treatment i lost all my hair,and i to seem like i have memory lost i can’t remember the time to take my medications,i get very sensitive to noise,very impatient at times.I have a 4 year old granddaughter who really loves to talk and i hate this feeling not wanting to hear her.what can i do?
Hi, Cheryl. Oh my. It sounds like your life has been turned upside down. How very difficult to have had to suffer the stomach pain like you did for so long before they finally figured it out. I pray that the treatments now will rid you of the cancer. In the meantime, please be very patient with yourself. Of course you are sensitive to the noise. Of course you are impatient at times. Who wouldn’t be? And the memory loss—what is called “chemo brain”—is also very common. I have a post here where you can read more about it: http://cincovidas.com/chemo-over-but-you%E2%80%99re-forgetting-things-you-may-have-%E2%80%9Cchemo-brain%E2%80%9D/.
The side effects you’re describing are all very common while you’re going through chemo. Please remember that very powerful drugs are coursing through your system and you’re probably not going to feel like yourself until the treatments are over. Be very patient and kind with yourself. Do things that make you feel better. If that means rest, then rest. Take nice soothing baths. Let others help you. Don’t be afraid to accept help. Give yourself the time you need to get through these treatments so you can get better. I get the feeling that you’re being a little too hard on yourself. Reserve time to see your granddaughter when you’re feeling up to it. Otherwise, focus on you, your body, and getting well, okay? That’s what’s most important right now. Please let us know how you’re doing. All my best to you.