Saturday, December 10, 2016

A Reminder about Being Positive

We're taking a short break from ASH proposals today.

I saw this blog post ("Can I Please be Allowed to Have Bad Days After Cancer?") on my Facebook wall yesterday, and I thought it was a good time to bring up the idea of positivity. I like to come off as very upbeat and hopeful when I write on Lympho Bob, and I think people who know me will agree that I'm like that offline, too. I tend to look on the bright side.

But I have my rough days, and frustrating days, and downright sad days sometimes. When you're as upbeat as I am, people tend to notice when you're even a little bit down. I had one of those sad, heavy days about a week ago. It wasn't something cancer-related, but it did weigh on me very heavily.

The blog post that I linked to is from a survivor of Acute Myeloid Leukemia, and while she seems to have made her way through it, she still finds herself feeling very sad some days, and then guilty for feeling sad; she's a survivor, after all -- what is there to be sad about?

I think we all get that way as cancer survivors (and we're all survivors, even if we're still in treatment, or watching and waiting, or just feeling horrible -- we were diagnosed, and we're still here, so we're survivors).

For those of us with Follicular Lymphoma, the feelings might be a little different. We're told we have an incurable disease, so even if we are cancer-free, we can never quite be sure about it. Even though it's been almost 7 years since my last treatment, I still worry. After my Rituxan, I was told I had a Partial Response, so there was a little cancer left. Same with my last scan a couple of years ago -- not completely clean. I don't have those same feelings of guilt as the woman who wrote the blog post, but I still feel that sadness sometimes. And for some of us, that does come with a similar kind of guilt. We're survivors, too, aren't we? Unlike some cancer patients, we have a shot at a long Overall Survival. How many of us have been told we have "the good kind" of blood cancer? How many of us have been told, "If you have to get cancer, this is the one to get"?

So why should we feel sad about having cancer?

My point is this -- it's OK to feel sad. It's OK to have a bad day.

There's an idea in the cancer community called "The Tyranny of Positive Thinking." (It comes from a book by Dr. Jimmie Holland called The Human Side of Cancer, and I first saw it posted in my online support group.)

The idea stems from the that, as cancer patients, we should always be positive, and that any negative feelings might actually make our cancer worse. People tell us this all the time -- "Hang in there! Stay positive! It's the only way you'll get better!" I think it's one of those things that people say when they don't know what else to say, and it's a message that cancer patients are constantly getting from others. Now, a positive attitude can be an excellent thing. But it can be a burden, too. Because if we're having a down day, and we're being told to stay positive, and we just don't feel like it, we now have the burden of feeling guilty, too. Double the negative emotion with none of the good results. (And on top of that, there is no scientific evidence that feeling negative thoughts hurts you.)

As I said, I like to stay positive in the blog, and I do my best to focus on things that are hopeful. I hope I'm not contributing to anyone feeling guilty about being down.

But if I do, here's the big message here:

It's OK to feel sad sometimes.

You've been diagnosed with what everyone keeps telling you is an incurable cancer. You might have kids, or a spouse, or family and friends that rely on you. You might have big plans that have been shoved aside. Why wouldn't you feel sad some days?

So if you're having a bad day, you have my permission to not smile. Have your bad day. Call in sick to work. Go back to bed and watch sad movies all day and eat ice cream for lunch. Let your dog up on the couch with you. Tell someone to bring you something that's bad for you. Put your head under the blanket and stay there. Scream into your pillow. Be short and nasty to anyone who talks to you.

Have a bad day. You deserve it.

And if tomorrow is bad, stay in bed then, too.

But here's the thing -- if you feel this way three days in a row, get some help. Talk to someone. Put down the ice cream and call your doctor and see if there's a professional who can assist you.

Depression is a real thing for cancer patients, especially newly diagnosed ones. A sad day or two is OK. But a sad life is one that needs some help.

Thanks for listening. I hope your days are happy.

(I can't help myself....)

(Back to more of that positive stuff from ASH.)

1 comment:

Fali said...

You are right Bob as a cancer survivor if we call ourselves that, we are allowed to have a down day once in a while. I underwent RCHOP in 2014 and after R maint am living my life, I know fnhl has no cure and will recur but who knows when and I am aware of it but what I notice is that people assume that it is behind me and I am cured and will be cancer free for the rest of my life now. I don't know how to react to that. This realization pricks me when people think that ,even though I give them no explanation. I do wish deep down that they were right.well, anyways,today I am living and kicking. Happy holidays to you and your family. I really like your blog as always.