“No [cancer] patient’s experience is the same.”
This sentiment was one I heard and read often at the beginning of and throughout my treatment.
It was, usually, in reference to the effects of the treatment itself. Different cancers, different chemotherapy regimens, different dosages, and the small but significant differences in the human body all contribute to how a patient will respond to treatment.
It wasn’t until after my treatment was over that I would realize how true this idea held for the experience as a whole.
Each individual’s experience is filtered through the lens of their own personality, past experiences and quirks. What may be helpful and soothing for one person, may be unhelpful and damaging for another. So what I am about to express is not intended to be a blanket statement. I am not suggesting that every cancer patient or survivor feels this way.
Rather, I am expressing the thoughts and insights that were and are helpful to me.
At the same time I have discovered, from conversations and discussions with other cancer patients and survivors, that I am not unique in my feelings.
This letter is not for everyone. This is for those 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.
This is for you.
(* note: my use of the words “we”, “us” and “they” are therefore not referring to every cancer patient and survivor, but those who resonate with the thoughts and ideas expressed here)
Dear friends, family, and loved ones of a cancer patient or survivor,
I know you mean well. I know you care, or 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 (relapse), 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.
It happened once, it’s more likely to happen again.
We defied the odds, and not for the better, when we developed cancer.
Before the official diagnosis we (likely) often heard and read how unlikely a diagnosis of cancer was. How it was much more likely to be “something else”. In my case, the word “rare” was used.
In some ways, the initial discovery, that phone call or conversation, that diagnosis itself, is the most traumatic aspect of having cancer.
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.”
But unlikely and rare don’t mean impossible. And once your brain realizes that it CAN happen to you, and it is and it did happen to you… well that’s not an experience you can erase or forget about.
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.
For me personally, 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 a 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.
Fear is unpleasant but sometimes necessary
Fear is an unpleasant and stressful thing. Over an extended period of time or in excessive amounts, fear in 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.
Most of the time, for the cancer patient and survivor, fear is just an unpleasant part of the experience.
Sometimes that fear can lead us to understand our own bodies better. I have read no shortage of stories about those who did experience a relapse, and it was the patient who reported an issue, before scheduled checkups and testing 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.
We know that most of the time though, 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.
Sometimes, part of keeping that fear from taking over is acknowledging it.
Sometimes, we just need to “get it out”.
And 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.
So let us get those words out. 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.
Instead, ASK US.
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.