Finding Support When Treatment Ends
"We’ll see you in three months."
What? But I’ve been seeing you every week, sometimes 3-5 days a week for months! What do you mean three months? What am I going to do? Who will watch me? I’m on my own? What will I do? Where will I go? How will I know what’s normal and what’s not? What is going to happen to me?
Those were just a few of the many thoughts that ran through my mind the day my oncologist released me from active treatment. It’s a scary proposition for patient and caregivers being on your own when you’ve seen a clinician, nurse or technician daily or weekly for months on end.
Finding the support I needed
Enter into my life the Cancer Support Community (CSC - formerly known as the Wellness Community). Facilities like the Cancer Support Communities fill that scary void that comes when treatment ends. The CSC opened in my community a short time after my mom died of her lung cancer. She and I were regulars at their affiliate the Gilda’s Club. The patient groups there did much to lift her spirits and banish her depression so when my diagnosis came I knew the CSC would become a part of my survival plan.
First, I sought out the Living With Cancer patient support group. It’s empowering to sit with others who have heard the words, “You have cancer”. Our cancers may be different but the challenges we face are the same; neuropathy, fatigue, nausea, changes in appetite, a support system that doesn’t understand that we’re not all the way back just because we are done with treatment, a support system that won’t let us express our deepest fears.
We need answers and we get support. We look for information about the way cancer affects our families, our personal lives, and our professional life. They have programs designed to help or guide us through each of those challenges. There are educational programs that focus on various cancer types and treatment modalities. The oncology nutritionist from my hospital does a food preparation program once a month then we eat the meal she has prepared.
Support outside my home base
Recently, my sister had a bad accident which required surgery and I lived out of a suitcase for two months while I cared for her. After a week or so I was missing my support group. Since I am always advising people on cancer boards to contact the oncology social worker at their hospital about exercise, support groups, meditation, and educational classes in their community I took my own advice.
So I Googled cancer support and exercise in Fort Wayne. They did not have a Gilda’s Club or a CSC but they did have a brand new cancer support facility called Cancer Services of Northeast Indiana that offered everything I was hoping for. I was so excited that I found them, I dropped in to see the facility and they were warm and welcoming. The director showed me around and invited me to attend classes and meetings despite the fact that I live in another state.
I decided to try a couple of other random communities and see what happened. Success. I found special classes or programs at each! Try it! In your search engine type in cancer patient exercise. I can’t promise there’s something near you but it’s worth exploring. At the very least check your hospital to see if it has a Better Breathers Club.
Resources to find the right community
For information about a Cancer Support Community or Gilda’s Club near you or one of their international partners visit the Cancer Support Community's website.
For the Cancer Services of Northeast Indiana visit the Cancer Services website.
The Better Breathers Club location information can be found at on the American Lung Association's website.
Did you find a facility near you that offers support? Please share them with us in the comments!
Where have you found the most support during your lung cancer journey?