March 30th, 2017
| Survivor: Hodgkin's Lymphoma
This letter is not for everyone. This is for those fighters and survivors who were, who are, afraid to upset the ones they love and who are afraid of coming across as too negative, or discouraging. This is for those who are afraid of saying, “this is what I need from you.” Because when you’re already relying on others for help and support, it can be difficult to ask for one more thing, even if that “thing” is what you need more than any other. This letter is so you don’t have to say it, so you can quietly repost, link, or email to the ones you think need to hear it.
Dear friends, family, and loved ones of a cancer patient or survivor,
I know you mean well. I know you care, or else you wouldn’t be reading this. I know you likely want, more than anything, for your loved one to be healthy and happy and cancer and pain- free. Trust me, they want that too.
I can imagine that when your loved one expresses fears, about treatment, about “what will happen,” about the cancer returning, you want them to feel better. You want to tell them that “everything is ok.” I can imagine that you might say this because you want to believe it yourself.
But before you say or type those words, before you let them slip from your mind and put them out in the open...Stop. Consider the very real, and unpleasant idea, that everything is not ok. If everything were ok, you wouldn’t be in this situation. And your loved one who is going through it all understands that better than anyone else.
But when you try to assure us that everything is “ok,” it can instead serve as a painful reminder of just how distant you are from our experience. Though you’re attempting to provide comfort and solace, we instead feel more isolated and alone. When you tell us “it’s ok,” it can feel as though you’re dismissing our very valid fears. This is especially true for survivors who are expressing fears about relapse.
So before you say anything, take a moment to read these reminders, written by a survivor, and addressed to anyone who loves someone with cancer. I hope that this helps.
1. It’s scary right from the beginning.
Before the official diagnosis, your loved one may have been told it “probably isn’t cancer,” or “you’re too young for that,” or “you’re too healthy for that”, or “you’ll be fine.”
So then when that moment of diagnosis comes, it is often the most traumatic part of the whole experience. Until that point, you and your brain rested safe knowing “It’s unlikely. It probably won’t happen to me. Cancer happens to other people. It doesn’t happen to me.” Well, wrong. And that’s not an experience you can erase or forget about.
2) The emotions can be overwhelming.
Some individuals will walk away from the experience of having cancer unscathed emotionally. Some will walk away with severe PTSD. Some of us are somewhere in the middle. I think I’m doing better than some, but I’d be lying if I said the experience hadn’t changed me at all. I’d be in denial if I said I didn’t have a bit of PTSD, and I don’t have triggers: the smell of isopropyl-alcohol. The scene of a waiting room. Going for a CT scan (no matter the reason).
And apparently, the phrases; “everything is ok” and “it’s unlikely” are also triggers for me; those are the words I heard, the words I told myself before my diagnosis. And, well, I know how that turned out.
Most of these emotions are tied to fear; it is an unpleasant but sometimes necessary emotion. Over an extended period of time or in excessive amounts, fear is unhealthy. But we also need fear. Without fear, we (as a species) might not learn from unpleasant and painful experiences. Without fear, we might behave so recklessly and foolishly as to not survive.
3) We know our bodies better than anyone else.
Sometimes that fear can lead us to understand our own bodies better. I have read no shortage of stories about those who relapsed, and it was the patient who reported an issue, before scheduled checkups and tests could find it. It was because of the patient’s thoroughness, of their hyper awareness of their own body, that the relapse was discovered. It was, in a way, their fear that helped them. Sometimes, our fear is helpful.
Other times, our fears are not helpful and that being in a constant state of fear is not healthy. But, despite that knowledge, it can be a lot of work to keep that fear away.
4) Listening can go such a long way.
Sometimes, part of keeping that fear from taking over is acknowledging it. Sometimes, we just need to “get it out.” In those times, we just need someone else to listen. Without judgement. Without a recommendation or a solution. Without any other intention. Just listen to us.
Let us get it out. Let us express that fear. Sometimes, that’s all we need to do. And in letting those words escape our lips, or fingers, we’re letting the fear go with it. Let us release them, without reminding us of the words and the odds that we already defied.
I know it’s hard. It’s hard for us too. And maybe, there are or will be times when “we” are “stuck.” Maybe we’re in a negative loop we can’t get out of. Maybe we really do need to hear those words, “it’s ok.”
But don’t make that judgement for us. Don’t try to dictate our experience and emotions. Don’t try to protect us from ourselves.
5) And when listening isn’t enough, ask.
When you feel the urge to tell your friend, your lover, your child, “it’s ok” in response to their fears, instead, ask them “What do you need of me? How can I help?” You might be surprised at what we say. We might tell you we need to hear those words. We might tell you we just want you to listen. We might not say anything at all and just hug you.
But the only way for you to know, and sometimes the only way for us to know, is for you to give us the option.
Ask us, and let us tell you what we need. Both parties will be better for it.
What do you want to get off your chest to your cancer support network? Share in the comments below!
to continue the conversation.
Want to blog with us ?