If you’re newly diagnosed, you probably have a tribe already – your friends, family, neighbors and colleagues. You may think you’re set with a robust support system in place. While your current tribe will be an important part of your cancer journey, trust me, it’s a different kind of clan you need now. You don’t have to drop the old one, but I can attest you will be greatly aided by finding a cancer crew.
When I first received the news I had cancer, I was in shock. Despite the fact I was becoming convinced I had the disease, the official diagnosis hit me like a hammer to the head. I mentally froze and slunk into an emotional corner like a sick animal isolating itself.
I’m an introvert by nature, so that was a natural impulse. Aside from the doctors and close family, I kept my new status to myself. In my defense, my doctor did say it was easily treatable. But when it became obvious I was going to be a cancer long hauler, I couldn’t do the lone ranger act anymore. (And, anyway, the Lone Ranger had Tonto and Silver). It was time for me to find my cancer tribe!
Honestly, I wasn’t sure where to start looking for others like me. Strictly by chance, I knew the hospital near my home had an oncology patient support office, so I called them to ask about lymphoma meetings. The hospital had none, but they had info on several in the general area.
Armed with that information, I started visiting meetings. After several months, I had found two groups with which I resonated. In each case, I felt a natural affinity toward the people and was comfortable with the way the group ran – its atmosphere and style. Neither group had anyone else with my exact diagnosis, but both had open-hearted, supportive members willing to share their experiences and listen to mine.
Trust me, those weren’t the only meetings I attended. Oh, no! I shopped around.
At the outset, I’d thought attending a single meeting would suffice. Yet I found it hard to decide between the two. When I considered going without the one, I couldn’t imagine leaving the friendships and insight I found there. When I pictured no longer attending the other, I knew I’d miss the wonderful guest speakers and deep experience among it’s members. Neither was perfect for me, addressing everything I was going through. But together, they hit the spot. So, mine is a blended tribe, and my tattoos attest to the fact.
I’ve been attending both support/networking meetings over four years now. Both gather IRL (in real life) in facilities roughly an hour from where I live. Both have gone virtual in the wake of Covid-19, which has made connecting easier than ever. I do look forward to seeing everyone again in the analog world though. While my attendance record isn’t perfect in either case, I have regularly participated in both to significant personal benefit.
I’m not suggesting anyone else do just like me. One group may very well be enough in most cases. Also, if I could get a do-over, I wouldn’t spend months going it solo. Instead, I recommend cancer patients of all stripes connect with fellow patients (and survivors) as soon as they can. When you do, you’ll find people whose eyes don’t glaze over as you talk about your disease experience. They won’t squirm and change the subject abruptly to avoid difficult or uncomfortable topics. They will listen and even understand. At times just being heard and knowing somebody else understands what you’re going through is all a person needs. So tremendously affirming! And, of course, they’ll do their best to help you (should you need or want it).
Where should you start looking for your fellow tribesmen? Do you have to wander through the jungle until you happen upon a hidden village? Start calling local hospitals till you find an oncology support program? Yeah, mine wasn’t the most efficient plan, was it? No, the patient organization that represents your diagnosis is the place to go. Because I have lymphoma, I have three easily identifiable groups to look to: the LRF, CLF, and LLS. (There are additional helpful groups.) The latter two happen to sponsor patient support and networking meetings in my locale. Information about those meetings is available through their websites or by calling them.
If you can’t find a disease-specific group available in your area, you still have options. You could try attending a more general cancer patient group. I went to one of those for several months. It was even farther from my home than the two I settled on, so it became just too difficult. Now that so many of the support groups have gone digital, I’m hearing discussion about folks continuing at least some Zoom, Skype, etc. meetings. Perhaps you could avail yourself of an online meeting. If nothing can be found, many patient support organizations (LRF, CLF, LLS, and so on) also have peer-to-peer programs that allow newly diagnosed patients to connect with experienced patients in the same or similar diagnosis.