National Cancer Survivors Day - What Can You Do?

Today is National Cancer Survivors Day.

So, let's talk about the ugly truth: surviving cancer is just the beginning.

This is a topic for which I raise awareness whenever I can. I've given talks to schools about the realities of life after cancer, and it was the main drive behind me publishing my memoir about my battle with cancer and also the effects of the treatment.

For most people, they receive an almost overwhelming deluge of support when they're first diagnosed. In my case, my hospital room felt like a daily revolving door, with dozens of visitors throughout the day, and sometimes with groups of 10+ showing up to check in on me. But over time, the support turns from deluge to a downpour, then to a rainstorm, then a drizzle, then a spritz, until it becomes mist so fine it's difficult to see sometimes. Toward the end of my treatment, I would go days without having a visitor—though there were still a handful of friends who would come to see me or text me and things of those nature.

This effect becomes more pronounced once you enter remission. A lot of people tell you, "Good job! You beat cancer, so you're all better and don't need us anymore. Peace, dude." Okay, maybe they don't say it like that—certainly not so overtly—but that's the gist of it: You're all better, you don't need us. Except you do.

Just because someone is in remission doesn't mean they're cured or even better. There's the fear of the cancer returning; depression and anxiety and PTSD common among a large portion of survivors; drug addiction from all the narcotics, which affects roughly a third of all survivors; and a whole menagerie of other side effects that vary from cancer to cancer, treatment to treatment, person to person—too numerous to even begin listing.

It's this fact, that there is still a lot of recovery for most survivors, that seems to get swept under the rug. Personally, I believe this is due to a couple factors:

1. People just want to be happy for you. Everything is good and you can return to your life. That optimism, while good-natured, tends to gloss over the side effects from having chemicals pumped into your body that are so toxic the nurses have to wear gloves when handling it, or being dosed with radiation, or having bits of you cut out. So, instead of: "You beat cancer, hip hip hooray!" the reality is more like: "You subdued cancer for an indeterminate amount of time, hip hip replacement!" 
2. The majority of the focus—the research, the attention, the money, the drug studies, the support—goes to cancer. It makes sense, cancer is a single big bad monster that is easy to vilify and rally against. What's not so easy to gather an army of support for is the million problems that come after. There are an insane number of different side effects, but the bigs ones for me were: Graft vs. Host Disease (which did a better job at almost killing me than cancer), Avascular Necrosis (a degenerative bone disease that came about from treating the GVHD and so far has led to 10 joint replacement surgeries), depression, anxiety, PTSD, arthritis, osteoporosis, drug addiction, 100 pounds of weight gain, and quite a few other smaller issues that cropped up as the result of treating both the cancer and the side effects of the cure.

So what can we do to better care for our millions and millions of survivors? People in the medical field can work to create more and better Wellness Clinics and Survivorship Programs. There aren't a ton out there at the moment, and hardly any when I was first going through my early post-remission days. Having resources like these available, places where your care can be centralized so you don't have a small army of doctors and specialists who don't communicate taking care of your variety of problems, is key to ensuring the survivor has the best quality of care possible.

For everyday folk, friends, family, the best you can do is continue to be supportive. I know it's exhausting work and painful for those close to the survivor, believe me, I do, but the best way for someone to get through all the challenges is to have a good attitude.

Now, that doesn't necessarily mean they should always be positive, because there will be sucky days where they feel like a cold turd warmed over, but it means being there for them and assisting them with whatever possible. Distractions are good, doing stuff they used to do to give them a semblance of normalcy, even if for an afternoon.

If you're not sure how you can do that, then ask them. I think there's a fear of bringing up health issues with cancer survivors and patients in case such topics depress or upset them, so it's best not to remind them. However, that is hardly the case. In fact, talking about such topics may actually be better than sweeping them under the rug, where nary shall they be seen again—it stops survivors from feeling like everyone is walking on eggshells around them, like their experience, horrific though it may have been, never happened. News flash: it did. And discussing it allows you to learn what the survivor most needs to be in the best frame of mind.

So, the best thing you can do is be open and honest with survivors. Remember, survivors are not delicate panes of glass, but people, as vibrant and diverse in experience and need as anyone else.

If you know someone who is a survivor, or if you know people who are friends with survivors, please pass along this information. It is vitally important that we spread awareness about life after cancer so survivors can receive the same quality of care and support that cancer patients.