Partial view of the Mandelbrot set. Step 8 of a zoom sequence: “Antenna” of the satellite.Created by Wolfgang Beyer with the program Ultra Fractal 3. Image licensed Creative Commons Attribution 3.0 Unported License.
When you are surrounded by seemingly infinite darkness, you stave off the madness by telling yourself the light will return.
I have a made a tear in the chaos. And I, like the butterfly out of a chrysalis, will continue breaking through.
“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.
When I started my blog in July of 2015, I was also dealing with cancer. I didn’t want to bring it up in the blog, and I didn’t include it in my “list of topics” post because, at the time, I didn’t really want to talk about it much. The cancer and the treatment had taken over so many other aspects of my life already, I didn’t want it to invade yet another space. There was already a pretty good amount of information about the experience of cancer out there: websites, blog posts, forums and communities. I didn’t have anything new or interesting to add, so why bring it up?
It’s a bit ironic then, that the return post to my blog is on the topic of cancer. In a way, it did invade this particular space; first, by draining me of so much energy that I couldn’t even think about writing anything for this blog (no matter the topic), much less actually form coherent sentences, and then again, in influencing my “return” post. But, if this is the only battle to cancer I lose, I’ll be more than thrilled.
So here I am, nearly a year from my last post (now you know why!) talking about cancer… sort of.
When I started writing this post, I almost capitalized the first letter in “cancer”. I’m not sure why; it just seemed like it was supposed to be capitalized. But then I decided that, regardless of what was grammatically correct, I refused to capitalize that word. I refuse to give it any more weight than it has already had in my life. Which is the entire basis of this post — the weight of an illness that isn’t there, of a word that no longer applies.
The good news is that I’m technically cancer-free now. I was diagnosed as Stage-2 Hodgkin’s lymphoma in March 2015 and underwent 6 months of chemotherapy. After 2 months of therapy, a PET scan showed no signs of metabolic activity. Chemotherapy was continued, but I didn’t need radiation. After my last chemotherapy session in Sept 2015, a CT scan showed no signs of the disease and my doctor declared me in remission, and sent me on my way. (In a manner of speaking. I still go in every 6 months for follow-up blood work and exams). I was cancer free, chemotherapy was over. All done, yay! Right?
One might think that six months of chemotherapy would be considered the “worst” of dealing with it, and that wouldn’t be an incorrect assumption. Chemo, while not as bad as I had feared, was still pretty damn awful and not an experience I ever, ever want to relive.
But as deeply unpleasant as the experience of chemotherapy was, at least I knew what to expect. While it’s true that no two people’s chemo experiences are the same, and you cannot predict just how your body will react, there is at least a list of symptoms to expect. You have some idea of what’s going to happen, and for the most part, there are drugs and remedies for those symptoms. My doctors and nurses at the cancer center in Orlando were incredibly supportive, as were my friends, family, and the internet in general. There was no shortage of sleepless nights, whether from pain or anxiety, but at the same time, when I had (sometimes irrational) fears or questions about what I was going through at 2 am, I could check blogs and post to forums and have answers and reassurances, often within minutes.
Treatment might be painful and exhausting and uncomfortable in ways I didn’t even realize were possible… but at the very least I had the solace that I was actively doing something to work against and fight the cancer. The cancer is going away; I’m getting better.
It’s the aftermath that no one talks about or can prepare you for. The doctor tells me, with a smile, that I’m considered in remission, that things look great, and to go “live my life”.
Easy for him to say. Easier said than done.
I understand his sentiment; I really do. I appreciate the well wishes.
But (there’s always a “but”)…you don’t just “bounce back” from chemotherapy. You can’t really “live your life” , at least not like you did before. I’m not trying to be all doom and gloom and say that things won’t ever be good, but they won’t be the *same*. There will always be the specter of “what if” hanging around. The specter fades, becomes less pronounced, over time. Eventually. But it still takes time.
No one can tell you how long it takes to recover. No one. Everyone is different. Each person reacts to chemotherapy differently. All of the official literature says “6–12 months” to recover from chemo, but even the literature admits that is, at best, only an estimate.
While there is a good amount of information on the web regarding how to deal with the effects of cancer treatments, I’ve found much less on the topic of recovery. There are fewer stories in the lymphoma forums from survivors, not because the survival rate is low (on the contrary, lymphoma is now considered one of the most curable of the cancers and has one of the highest rates of being cured), but because survivors just don’t visit the forums as often, myself included. I imagine it’s a mix of not wanting to relive that experience and just not thinking about it anymore.
Of course, there are bits of advice here and there, but they’re all pretty boilerplate; “Get rest, eat right, try to exercise”. For example, the American Cancer Society website, which is fairly extensive, doesn’t even have a clear section or area discussing post-treatment.
Recovery from chemotherapy, from any cancer therapy, from the very experience of having cancer itself, is not linear. It is not a matter of just “getting back to normal”. As much as the survivor (I, you, someone you know) wants to go back to their old life, it’s just not going to happen. Recovery, in my experience at least, is as much about healing (physically, mentally, emotionally) as it is about finding the new normal.
But there’s this sort of…guilty feeling over that failure to get back to normal. You should get back to your old life, right? You beat cancer, maybe you beat the odds! You survived. So… why aren’t you taking back your life?
It sounds silly to type it all out now, but when you’re in the moment, when you’re dealing with hormonal derangement, chemical imbalances, and pure exhaustion… the craziest of thoughts can seem normal.
In my scouring of the internet for information on dealing with the after, I found more questions than answers. There was no shortage of people asking questions about the process, but it didn’t seem there was much information to follow. It seemed there were more people, like myself, wanting help and information and just some idea of how to get through this new part of the “cancer journey”, than there were answers.
Over the past several months, I’d toyed with ideas, written and re-written blog posts on the process of recovery dozens of times. But I’d never gotten to the point of actually being able to clearly articulate and post those thoughts. I think, in part, I still had that fear that what I might say or post just wasn’t that important.
It took a friend posting about her fears and questions on the process of recovering from cancer and chemotherapy, for me to realize how important (and maybe even necessary) it is to put my own experience out there. I thought it might be helpful not only for other survivors, but for their friends and family, as well. When something as overwhelming as cancer affects an individual, it affects the other people in that individual’s life as well. In fact, a recurring theme I saw through the posts and forum discussions about the post-cancer experience was how to get the well-meaning but oft-uniformed individuals in a survivor’s life to understand what they were going through.
As much as I hate the phrase “journey” in regards to cancer, the recovery aspect is a journey. It is a long and winding road. And it may even be a journey that never really ends, but instead continually evolves.
Because even when the disease itself is gone, cancer remains a part of life for survivors and their loved ones and that continuing experience needs more openness and discussion.
No two survivors’ experiences may be the same, but perhaps, through discussing our experience and being open with your thoughts, we can help each other through the ever-winding and sometimes dark road that is post-cancer recovery.
Maybe in providing support and comfort to others, we can find it for ourselves.
If you’re a survivor, feel free to join the conversation now and share your post-cancer experiences and stories in the comments.