Monday, September 26, 2022

Talking to Other Cancer Patients and Survivors

The website Blood-Cancer.com (for which I have written in the past, before I got too busy) had a really nice couple of articles over the past few weeks. The articles featured two of its writers, Ramae and Deb, who had been chatting for a couple of years online. Each of them is a blood cancer patient/survivor. They finally got a chance to meet one another in person. They each wrote about it separately. Ramae's story is here, and Deb's is here.

The stories came at an interesting time for me. Last week, I had the chance to speak to some other lymphoma patients/survivors. 

I keep using that "patient/survivor" thing because I don't what peoples' status is. There's whole other conversation to be had about what we call ourselves. But that's kind of part of what I want to write about.

I don't think I've ever met any of you in person, face-to-face, but I did have the pleasure of Zooming with a few of you during the pandemic, and I've had some email conversations with a whole bunch of you.

And I really enjoy making those connections. Especially with other patients/survivors.

There's something kind of oddly wonderful about hearing someone else's story. Their diagnosis, their treatment, their survival. So many of the details are different. The people I talked to last week all had more aggressive cancers. They all seemed much younger. Their diagnosis had happened much more recently. 

But so many of the details were the same. And all of the feelings were, too. The fear. The surprise and disbelief. Confusion. Guilt. Just not-knowing. 

I remember a few years ago hearing a cancer survivor talk about what it was like to tell her kids about her diagnosis. It brought back so many feelings for me of telling my own kids. It was actually painful to hear her story. But at the same time, so comforting. It's a strange feeling, a kind of reverse schadenfreude. Not taking pleasure in someone else pain, but taking pleasure in sharing that pain.

I remember, too, many years ago, hugging someone I worked with, who had been dealing with breast cancer. It was a wordless hug. We both just knew what we should be saying, and we didn't have to, because we both knew. 

I'm not saying I feel that way with every cancer patient/survivor I meet. Some experiences really are just too different. I sometimes feel strange describing my experience to someone who has had an aggressive cancer, because there are things they've been through that I haven't. 

And sometimes the words we use just don't match up. I call myself a cancer patient most of the time. I'm not cured, and I still see my oncologist twice a year. For me, it's an active disease. But sometimes I call myself a survivor, because it's what people are used to hearing. I know for some people, it means that my cancer experience is over, and we don't have to talk about it. And that's OK. I call myself a survivor to make other people comfortable sometimes. 

But despite those differences, it seems like the similarities are greater, and our experience is distilled into one common thing - we've heard a doctor tell "You have cancer," and we've felt everythig that goes with it. 

I'm not recommending that you seek out other cancer patients/survivors to talk to, unless you know they are willing to share. But if they are, it can be a wonderful thing. It just feels less isolating. 

If you've never been a part of a support group, and it feels like you need to make a connection, I highly recommend them. In-person or online -- either can work.

And, of course, I'm always happy to listen if that's what you need.



 

 

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