The journal Network Science published a fascinating article a couple of weeks ago called "Social Influence on 5-Year Survival in a Longitudinal Chemotherapy Ward Co-Presence Network." It isn't about Follicular Lymphoma, but I think it has some real implications for all cancer patients.
The researchers looked at records from 4691 cancer patients in the UK who received chemotherapy. From those records, they could tell when those patients were in a treatment room with other patients who were also receiving chemo.
They were also able to look at what happened to those patients. And this is the fascinating part -- they found that if someone was in a treatment room with another patient who survived for more than 5 years, then that patient would also be more likely to survive for 5 years. And, likewise, if they were getting chemo in a room with a patient who survived less than 5 years, then they were also more likely to survive for less than 5 years.
The researchers didn't study why this was the case, but they think it might have something to do with modeling behavior and stress. At times of greater stress (and getting chemo is certainly one of those times), having social interaction can be a way of reducing stress. Supporting one another might be a way of making a stressful situation less stressful, and helping one another's survival. Without that stress relief (say the researchers), stress hormones like adrenaline can build up and create problems (since adrenaline prepares you to fight or run away, and you can't really do either in a treatment room.)
I think back to my own time in a treatment room. I got Rituxan, a monoclonal antibody, not traditional chemotherapy. But it was a stressful time anyway. The treatment room at my oncologist's office was kind of large -- it probably held 20 chairs.. It was in a U shape, with a nurse's station in the middle, with glass walls so they could keep an eye on us. When we arrived at the room, it was clear that the nurses wanted to give us some privacy -- we were given chairs far away from one another. So I might be on one side of the "U," and two more patients might be on the other sides of it, and we might never even see one another, let alone interact with one another.
And, to be honest, I was OK with that. I was there for hours, and I mostly wanted to sleep, or read, or watch TV. I wasn't really up for small talk. I usually had my wife with me, though my mom came once, and my kids came to visit me once. I had opportunities for interaction if I wanted them, and I was lucky that my loved ones' schedules allowed them to be there with me.
But now I'm thinking about other people in that big room. It was almost 8 years ago, so I don't remember them. I think some of them had company. But I'm sure some of them didn't. Would they have wanted to talk? It really is a stressful place -- would they have been less stressed if we could have chatted for just a few minutes? Would just a silent nod have helped -- just a small sign that said, "This sucks for me, and I know if sucks for you, and I hope your day gets better when you get out of here." Just something that let someone know how they felt?
It brings up a larger issue -- the importance of social interaction for cancer patients, in general, especially interaction with other cancer patients. I hear lots of sad stories from cancer patients who lost friends, or whose family members fell out of touch after a diagnosis. I think people don't know what to say and do, so they say and do nothing. That has to do some damage, to your mind and spirit, if not your body.
That's what makes support groups so important, whether face-to-face or online. There is almost always someone there who has been through what you have been through, who has felt what you have felt, or who has wondered what you are wondering. It's a huge stress relief.
I've talked before about the support group I found online just days after I was diagnosed. I still check in every day (though I don't post very often anymore.) It was a huge help to me, especially early on. I got support and I learned a lot about Follicular Lymphoma. I learned I wasn't crazy for thinking what I was thinking. There are even more of those groups online now, thanks to Facebook and other social media. And, of course, lots of face-to-face groups to join. (And, of course, I like to think Lympho Bob plays a small role in that, too. I get emails from some of you, and I'm happy to talk about whatever you want to talk about.)
But the point is, interact -- talk to someone, especially someone who truly understands what you are going through. It's a great stress relief, and, apparently, good for your physical health, not just your mental health. I've said it before -- Follicular Lymphoma is an emotional disease as much as a physical one. And sometimes those two things are closer than we realize.