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How To Talk to Cancer Survivors about Cancer

Testicular Cancer Awareness Foundation

I know that I, and most every cancer survivor and co-survivor friend that I have, have all had awkward experiences with friends, family members, co-workers, and other concerned people in the aftermath of their cancer fight who might have wanted to say something to us in support or just ask questions, but have been too afraid of saying the “wrong thing” and upsetting us. On one hand, people genuinely do care and are concerned, but on the other hand they also understand that cancer is terrifying and don’t want to risk upsetting someone or taking them to a bad place unintentionally by saying the wrong thing. Commonly people might end up saying nothing at all, which in itself can be hurtful if you were closer to us, and we were expecting you to be a source of support rather than feeling isolation and awkwardness. In general, people just don’t know how to broach the topic of cancer, questions or comments are never posed, discussions never take place, insights are never gained, and as cancer survivors we lose out on a chance to both gain support and to help raise awareness about cancer and what our lives are like as survivors. This is a great shame, and also a huge missed opportunity when those that are closest to us are too afraid to ask things, genuinely just trying to understand or know more about our experiences, especially when the protocol for asking such things has already long been established.

“You just need to ask permission to ask about cancer.”

The late author Lori Hope covered this topic in an entire chapter in her excellent book, Help Me Live, 20 Things People With Cancer Want You to Know, on asking permission to talk about anything relating to cancer with someone. Before you ask anyone a question of a personal nature, it’s long been the protocol to seek permission to ask such a question first. “Steve, can I ask you a personal question?” The same would be true of any war veteran. You wouldn’t just go up to one and ask “what it was like”. You’d first ask, “can I ask you about your war experiences sometime?” Just like war veterans, mental health related issues such as depression and post-traumatic stress aren’t exactly uncommon with cancer survivors either. We’ve fought our own very personal battles for our lives and our health, and the same protocol and sensitivity needs to be applied.

I’m a very open and public person about my cancer experience, but even so one still needs to seek my permission before asking me about cancer, because you have no way of knowing where my mind is at in any given moment. Maybe I’ve been having a nice couple of weeks, I haven’t been thinking about cancer at all and it’s the last thing I’d want to think about when you ask. Or maybe I’ve been struggling with depressive thoughts or post-traumatic stress and it’s just not a good time, and I’ve been in need of a lot of personal space to sort these issues out. As Lori Hope framed it in her book, you need to ask first and allow me to refuse to field the question to avoid causing me pain, but I personally will never turn anyone down completely. I’ll be appreciative of anyone even asking at all because I know it takes a lot of courage to do so. You’ll be on my radar screen, and the next time my mind is in the proper place I’ll get back to you. It’s also possible that perhaps I’ve been actively reflecting on my cancer experiences, and you just happen to want to ask about the exact topic that I’ve been reflecting on myself and I can field your question on the spot. You just never know, so asking permission first is all you really need to do.

It’s really a two-step process.  Just as when you might seek permission to ask someone a personal question, you ask for that permission first, and then proceed to ask your actual question. Seek permission to ask someone a personal question, about their cancer, and if that permission is granted proceed to ask your actual question.

The following are all good approaches.

“I know you’re a cancer survivor and I was wondering if I could talk to you about that sometime?"

“I read one of your blogs, and was wondering if I could talk to you more about one of them sometime?”

“A family member was diagnosed with cancer (or is a cancer survivor), and I was wondering if I could talk to you sometime to help me understand what they’re going through better?”

Especially if you can state the purpose and why you’re asking, if it’s because you genuinely care and are curious and want to understand more, or especially if you have a friend or family member going through something similar and you want to know how to care for or support them, you’re sure to win some brownie points. Even if I’m not quite mentally in the proper place to field a cancer-related question, I’ll make a best effort to get there as soon as possible for you if I can’t shift my mental state to full readiness right away.

Don’t ever do something like this out of the blue, though.

“Hey Steve, so I read one of your blogs and when you were dealing with PTSD did you have flashbacks like Clint Eastwood portrayed in that Firefox movie in the 80’s?”

If you care at all about a friend who’s survived cancer, or who is a war veteran, or who has been through any extremely challenging life experience, you won’t ever do this. Not only did they fail to seek permission to even ask such a personal question in the first place, thus violating the protocol, but they’re also diving right into a very touchy and incredibly challenging subject. Nobody likes being blindsided. Not only that, but you could very well find yourself on their mental “PTSD unsafe” list where they’ll want to distance themselves from you, and thus damaging your relationship with this person.

“Hey Steve, so I read one of your blogs and I was wondering if we could talk more about it sometime?”, you ask. Maybe I’m in a more receptive state. “Oh sure, which one?”, I reply. “It’s about the post-traumatic-stress you experienced….”, they follow up. “Oh… you know what, why don’t I catch up with you in a couple of days on that one.” Sometimes the most challenging topics, ones that have caused us significant amounts of pain, require a bit of additional mental prep time.

There are some exceptions. If we know each other really well, if we’ve talked about cancer before and I definitely feel comfortable talking to you about it, or if you’re a fellow cancer survivor or co-survivor, you’ll tend to get a first round bye but should still use the protocol. “Can I ask you about what chemotherapy was like?”  You can jump right to what you’d like to ask or talk about, but should still ask in a permission seeking way such that I can politely refuse if I’m just not prepared to go there at the moment you ask.

You can never go wrong by first seeking permission to ask cancer-related questions.

Additional suggestions from the followers of our Facebook page are to always keep a positive and constructive tone in any discussions about cancer. Realize that cancer survivors and co-survivors who are willing to talk about their experiences, are opening up to you about something that's caused them quite a bit of pain, and it's important for us to feel safe and protected while doing so. I once had someone who had challenged my supposed political beliefs on public health policy that they had only made assumptions about, and then brought up painful aspects of my cancer fight without warning in a very cheap attempt to "score points". I very quickly pulled the plug on this discussion. Not only was this person in violation of numerous protocols on how to actually have civilized discussions with people, but they also re-triggered a week's worth of PTSD which put me into full lock down recovery mode, and I no longer cared to have any contact with this person after that. We're opening up to you about something that's caused us considerable amounts of pain. Please help us feel safe and protected by doing so, by maintaining a positive and constructive tone at all times.  

It's also important on the part of cancer survivors and co-survivors to help those around us feel like we're approachable. Also highly suggested by followers of the TCAF Facebook page are a little one ball, one nut, or "missing nut" humor. There's nothing quite like cracking a joke or two to help put people at ease, and to help set the positive tone that's needed.

As knowledge and awareness about cancer spreads, and methods of earlier detection and treatment options improve, the population of adult and especially young adult cancer survivors has been booming. It's a great blessing to live in such a time, but feelings of awkwardness and isolation are all too common when family or friends that are close to us just don't know what to say or how to approach us, or might not say anything at all. It's yet another challenging aspect of being a cancer survivor. The more at ease we can help people to feel and the more conversations we can get started on the topic of cancer, the better off we're all going to be when we can start to bridge this gap. I want people to have the courage to say things, to ask questions, and for discussions to take place, and hopefully the simple pointers in this blog will help to make that happen more often.

Let's get talking about cancer! 

Steve Pake
TCAF Blog

Cross-posted at StevePake.com

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