Coping with Grueling Treatment Without the Pressure to Stay Positive

I started writing a post about my chemo treatment. I want to share the ins and outs and ups and downs of it, and I want to provide more detail and emotion than what I may have written on my Caringbridge site.

So I started writing the post and going back and researching the names of the drugs and the procedure, and then I just stopped. It didn’t make me feel very good and it reminded me of how awful it was.

You know that saying about misery loving company? Hello, my name is Misery and I love Company when I’m staying at Despair Hotel.

While I never wanted to wish ill on anyone, the one thing that I REALLY wanted when I was going through treatment was someone my age with Ewing’s sarcoma on their pancreas, going through treatment at the same time as I was. That was the company I yearned for. But no one else on this planet knew what I was going through at the time I was going through it, and I didn’t know if it was okay to feel that badly for nine months straight.

I follow a popular business owner and TV show host on Instagram (we’ll call her Jane). She was diagnosed with breast cancer a few months ago. Jane’s initial postings were positive, with an “I’ve got this” attitude.

Can I be very honest with you? Whenever I see someone in the early stages of a diagnosis with a very positive attitude, it makes me cringe. I feel awful about that because I was positive too, initially!

The word “cancer” has been thrown around so much and we see it portrayed on TV and film, so naturally I thought I’d receive chemo via osmosis and then sit in a recliner all day with a turban on my head. I thought I would just smile through the treatment and my eventual demise would be glamorous, with the perfect lighting around my body and rainbows in the sky. But there’s about a million things you don’t see on TV that leave you unprepared for what’s about to come.

Jane announced her diagnosis and proclaimed, “I have all the support, resources, and a platform to help other people through this. So if anyone has to have breast cancer, I’ll gladly let it be me.”

I thought, “Ok, yeah, we’ll see if you’re singing that tune in a couple months.”

I feel so icky for poo-pooing on other people’s positivity and what I perceive as faux strength. But NOTHING can prepare you for the fire that you’re about to walk through.

There are chemo options that are less… invasive. The type of chemo treatment you receive depends on your age, your existing medical condition, the severity and aggressiveness of the cancer, and proven methods, statistics, and trials. But most of the time, chemo is the absolute worst thing your mind and body will ever go through. And no one tells you that until you’ve figured it out for yourself. (It’s probably best this way, otherwise many people with many more years of life would opt out of treatment.)

Recently, Jane posted about her chemo, “I spent the weekend in more agony than I hope anyone ever has to endure… It was nothing short of a living hell with no escape.”

And, again in all honesty, I thought, “There it is.”

And I feel terrible for thinking that too.

Jane ended her post with hope as we all should. But I am also glad she did share how difficult her journey has been. I don’t think we should hide that from others, especially other patients, medical professionals, those making decisions about funding research, as well as the general public who haven’t, and won’t be, touched by cancer.

In this case, exuding a courageous spirit and reassuring others that it’s going to be okay does a disservice to everyone that has suffered from and through cancer treatment’s torture. Covering up the physical and mental anguish that results from chemo and then putting on a brave face does more harm than good.

You may say, "But doesn’t keeping a positive attitude help beat cancer?"

The American Cancer Society says, “Studies have shown that keeping a positive attitude does not change the course of a person’s cancer. Trying to keep a positive attitude does not lead to a longer life and can cause some people to feel guilty when they can’t ‘stay positive.’ This only adds to their burden.”

During my chemo experience, I felt no obligation to feel positive. I didn’t even have the energy to want to be positive.

I don’t mean to say all this to be depressing or discouraging for newly diagnosed or current cancer patients (myself included). I want to share the reality. And the entire purpose of this blog is to share that there is life on the other side for many patients.

You will be in a dumpster fire for weeks, months, maybe years, and it’s okay to admit that it absolutely is the worst thing in the world, that you’re struggling, that you see no light at the end of the tunnel. You have my permission (not that you need it) to share that all day, every day, for as long as you feel it. But do remember there is always hope. And wonderfully and amazingly, you don’t have to be positive to have hope.