Dearest wonderful friends! This is a post I’ve been thinking about writing for a long time and I feel has recently become more relevant. Why? Because this past week was a pretty lonely one as weeks go in Cancerland. It seems strange to say that I felt lonely in the middle of a sea of friends and family and love and care and rides and dinners and grocery store runs and unbelievable, seemingly unending support. But the fact of the matter is that this week was also pretty rough and filled with illness and illness breeds a very special kind of loneliness. I just started AC, my new chemo drug, last Friday. As promised AC wreaked havoc on my poor body. For three days I felt like I had the worst stomach flu of my life and was, for all intents and purposes, bed ridden. Then I slowly and sluggishly started coming back to life but it was a painstaking process. My limbs ached, my brain stopped working, my stomach was constantly in knots, my everything was tired. On Thursday, for example, my first full day back to work, I was the girl on the elevator that got on and immediately lurched against the wall, hoping my legs would keep holding me up, barely able to peel myself away when the doors opened up for me. It was a pathetic sight and I was exhausted by how exhausted I was.
Feeling this crappy breeds loneliness and not just because I was forced into becoming a hermit for nearly a full week. This kind of loneliness also comes from knowing that no one really understands. It feels very ninth grade melodrama of me to go around saying, “no one understands me” but it’s true. I have a lot of people along for this cancer journey with me but I alone have to endure the consequences and not just the physical ones. There is a constant fear, a constant sadness, a constant sense of being overwhelmed that I drag along beside me almost all the time. It’s lonely to walk around with this constant sense of gravity weighing me down.
So what do we cancer patients do with all that loneliness? Well in my case I have attempted to seek connection. I connect through you all on this blog, which I will say again, is an incredible outlet for me. I connect with friends, sometimes by sharing the burden and sometimes by checking the burden at the door and settling in for moments or minutes or the rare blessed evening without it. I connect with strangers or people who I hardly know in deeper ways than I ever could have before. Cancer has made me more vulnerable and more honest and I think it’s had a similar effect on those around me. It breaks down some of the barriers that we all carry around. It has a way of reminding us all of our fragility and our humanity. I crave these kind of break-down-the-barriers connections which help to lift some of the loneliness.
What I wanted to talk about today are some of the things that are more commonly said to cancer patients that only serve to build barriers between us. I have several disclaimers before I dig in though. The first is that the vast majority of people have only ever said the right thing to me and I know how hard saying anything at all can be. Second, I know that the intention is almost always to help. We all want to help each other and it’s a wonderful instinct. The problem with saying these things is that they are not the right kind of help. They aren’t empowering and they don’t help to build the connection that I’d like to have. Finally, I don’t want anyone that I know personally to read this list wondering if you’ve said these things and permanently damaged our relationship. You probably didn’t and you definitely haven’t. The intention here is not to make anyone feel bad. The intention is to offer some advice on how we can all be better to one another in tough situations and come out with deeper and more meaningful connections. Much of what I mean is summed up beautifully in this little video which I highly recommend taking a moment to watch.
What Not to Say
“At least your boobs will be perky!” “At least you look great bald!” “At least they caught it early.” By starting with “at least” (as the video above suggests) there is an equation happening in which one experience is weighed against another. It’s true that you will have both your breasts removed in a traumatic and painful surgery but at least they will look good afterward. Yes, you lost all of your hair in what was undoubtedly an unpleasant and difficult shock to your sense of self but at least you look great bald. Yes, you’ll have to go through five months of chemo, radical surgery, possibly radiation and even then early detection can in no way guarantee that you’ll survive the next five years but at least they caught it early. It’s the first part of these sentences that I’d like to talk about, that I’d like to explore and get off my chest. But by beginning at the end with the “at least” the value judgement has already been communicated to me and I’m left feeling like I either have to explain that “actually, that’s not how I feel”, or “that’s not how it works,” or I have to just politely agree. Ultimately the calculations about what qualifies as a silver lining is Cancerland are complex and often changing. I completely understand the motivation for seeking out them out because I am often trying to do it myself. But if the goal is to make me feel better than being open to listening to and talking about the hard stuff is what would help most.
“It must be so awful/painful/horrible…”
On the flip side of trying to find the silver lining are those who are doing the same kind of math but coming up with the opposite result: that everything is indeed terrible. It’s the “must be” that makes the value judgement. I hear this most often from people who don’t get to see me everyday and who, I assume, are only imagining the worst. While I don’t want silver linings painted for me I also don’t want to be pitied. Pity makes me feel small and like I have to prove how healthy or happy or good my life still is. Look, I am still working! See, I still exercise! Check it out, I am still a pretty normal person! Yes, my life has become considerably more challenging since I was diagnosed but it’s still a life and I’m still out there living it. Again, I understand the reflex that we all have sometimes to feel sorry for someone but feeling sorry for me doesn’t empower me, doesn’t make me feel heard or helped. It just makes me feel small.
A story about someone you knew with the same kind of cancer who died.
This is probably the biggest no-no in my book and yet I have heard these stories many times. I completely understand the desire to relate to what I am going through. The problem is that if you haven’t had a life-threatening illness, a near death experience or extreme hypochondria that you probably still walk around with your cloak of invincibility (it should be noted that these cloaks are known to wear with age). This cloak has a magical power that makes its wearer believe “that could never happen to me.” The storyteller might believe that I still posses this cloak but in truth it was revoked for eternity the moment I was diagnosed with cancer. Cancer patients are afraid of dying and even when we don’t act afraid or talk about being afraid, we are still afraid. I feel, that 4 months after my diagnosis, I have finally completed construction on my own shiny set of armor that usually blocks out thoughts of death and allows me to stay positively focused on living out a long and healthy life. Your story about your friend is like a giant chink in this armor and will most certainly force me to imagine my own potential demise. (I hope you’re still with me after I hit you with two attire related analogies in one paragraph!)
The only exceptions are if you are relaying the story as part of a conversation in which we are both coming to terms with some difficult feelings together OR if you have really, really intimate details about the kind of cancer that person had and why they died (which most people do not). “Cancer” is an umbrella term that covers thousands of different illnesses and even under the category of “breast cancer” there are many, many, many different types with many different features and each of us must weigh how aggressive our treatment is and how we react based on a combination of anecdotes and carefully measured statistics of survival and recurrence rates. So when I hear about someone else who had breast cancer and didn’t make it I want to know the Stage, Grade, type of breast cancer (invasive ductal carcinoma, inflammatory, in situ, etc.), receptor status, chemo protocol, surgery type, radiation protocol, what kind of diet they were on, how much they weighed, whether or not they exercised, if they had been smokers, if they had kids, if they tried alternative therapies, if they ever went into remission, etc. if I am going to feel at all like what happened to that person won’t happen to me.
(On a related note, my least favorite posts on Facebook are about fundraisers, memorials, etc. for someone who “died from breast cancer,” especially someone young. While you might expect me to be more empathetic or understanding about this kind of thing these posts usually just send me into a psychotic whirlwind of stalking any and all information I can find about the person who died so I can determine if their breast cancer was worse than my breast cancer, how long they lived, what eventually killed them, etc. I have almost never found more information beyond “died from breast cancer” and I usually feel terrified for hours afterward. See… we’re afraid.)
“Have you thought about trying…”
“Have you thought about getting a mastectomy before chemo?” “Have you considered not getting chemo and trying pot/wheat grass/acupuncture instead?” “Have you thought about the fact that your biopsy probably made the cancer spread?” In many cases, yes, I have probably thought about it. I think about cancer all day long. I am constantly researching it. I could probably write a thesis at this point on the topic. I’ve read countless journal articles, multiple books, and been on a million message boards. Not to mention the fact that I am in the care of multiple, highly qualified medical professionals including a medical oncologist, a breast surgeon oncologist, a radiation oncologist, an endocrinologist, a naturopath and an acupuncturist. I trust all of them but have also done the research to know for myself what is going on. My course of treatment is based on the best knowledge of the medical community, I have sought many proven complementary alternative treatments under the guidance of medical professionals and I have done a tremendous amount of work to change my diet, limit toxins in my environment, etc.. I completely understand the drive to want to help and to offer advice and expertise. I welcome a conversation about the science of cancer, what proven conventional and alternative treatments are out there and what personal experience or knowledge you might have but I’d like that conversation to be from a place of mutual respect. That respect has to begin with respecting the choices that I have already made and the knowledge that I already have.
In summary, if you want to talk to me about cancer I am totally up for it. People often say, “I’m sure you’re sick of talking about it,” and I have never ever once gotten sick of talking about cancer. I have gotten really sick of thinking about it on my own but talking about it with other people is usually a great relief. All I ask is that you try to meet me where I am at, be willing to listen and bring the same level of honesty and vulnerability that I’ll bring to it. That’s where the good stuff is at. That’s the connection I crave.
What to say instead
This is a completely appropriate and straightforward response that I agree with wholeheartedly.
I don’t know what to say.
That’s ok. I don’t know either sometimes.
I’m here for you.
This is most appreciated and really all I ask.
Let me know if I can do anything to help.
I certainly will and your offer to help is sincerely appreciated.
I can’t imagine what it’s like.
I know, and that’s ok, but I would be happy to tell you.
And finally, the two best things that people have said to me on this journey:
1. I love the style of your strength.
2. You make me feel so much stronger as a woman and a human existing on this planet that is full with scary diseases that happen to people who don’t deserve them.