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Two men sitting at a bar, one looking very angry and the other looking confused

What It’s Like to Have a Slow-Growing Cancer

Recently, a writer friend posted to social media, asking for help with an article. She has a chronic illness, one that can go years without giving her any trouble. She wanted people to share their experiences of what it was like to live with a chronic illness that doesn’t always bother them, and what it feels like when it does finally act up.

I immediately thought of my own cancer, follicular lymphoma.

Follicular lymphoma: A chronic disease?

It’s such a strange disease. For some of us, follicular lymphoma grows aggressively. For many of us, it grows very slowly. For others, it grows slowly, speeds up, and then grows slowly again. Lots of us are in more than one of those groups over our years as patients.

But since follicular lymphoma is considered incurable, it can often be considered a chronic disease: a condition that will be there all the time, and maybe, like with my writer friend, laying low for a while.

Of course, as many follicular lymphoma patients will tell you, that state is a mixed bag. We might feel OK physically, but mentally, there’s always the worry about if /when it will come back.

How it feels to have a slow growing cancer

As I thought about my friend’s request, an old story came back to me. It’s one I told years ago when someone asked what it was like to have a slow-growing cancer like follicular lymphoma.

I picture myself in a bar. I take a seat at the far end of the bar, away from the door. I’m alone, enjoying myself, maybe watching a game on TV and drinking a beer.

And then I notice, at the other end of the bar, a man. He’s looking at me. Staring, really. And sneering. I don’t know him. I’ve never met him before. I’ve never done anything to him. I’m just minding my own business, watching a game and drinking a beer.

But it’s clear that he has a beef with me. I’ve been in enough bars in my life to know that, when someone is staring at you like that, there is going to be trouble. I don’t know what’s going to happen, or when, but it’s not going to be good.

I can’t leave. I’m at the far end of the bar, and he’s sitting at the other end, right by the door. I can’t get out without going through him.

I can try to call some friends. They’re nearby. But I’m not sure they’re going to get to me in time to help.

I’m stuck in my barstool. I just want to drink my beer and watch the game. I didn’t ask for trouble. But I’m not sure I can avoid it.

To me, that’s what it feels like to have a slow-growing cancer.

It gets better

The good news is, that feeling gets better with time. Maybe that menacing man drinks himself silly and he’s not much of a threat. Maybe my friends do show up in time to help me.

Over time — months and years — I get used to just sitting on the stool, keeping an eye on that guy, and learning to just enjoy myself. There are worse places to be than sitting where I am.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Denny
    5 months ago

    I have CLL watch and wait mode 4 years now, I guess I’m fortunate not lucky, but I find myself more and more to tell my story.I have 6 months check up for my WBC count and when I go to the lab seeing people there that are suffering and ladies with there heads covered I just tell myself that I don’t belong but I do belong. I am going for my seventh visit to my Oncoligist, what he’s told me in the past visit’s that I’m BORING those 2 words carry me to my next visit, so i go in July 24th expecting to hear those words again. Good luck to everyone and I hope some of you can hear those fantastic words.

  • Ann Harper moderator
    6 months ago

    What an analogy – I never thought of my cancer like that. Such a scary thing. I will hope the rats break through the ropes for both of us and anyone else living like this. Good luck to you.

  • Dan122
    6 months ago

    I wish to get there. My FL is not that waiting kind of guy. 6 month after my first treatment and it is already here again. Now I’m going to SCT. Refractory disease, how they call this beast.
    Anyway your bar story describe the show to most people. Wait is disturbing. It is like Schrodinger’ cat, a cancer that is killing but not.
    Anyway we should not get into the incurable sentence, because about 15% of FL goes away by itself, natural remission. There are a tiny door out of that bar. And in 10 years we can expect more antibodies as gaziva, that works a lot better than rituximab.
    Best wishes.

  • ElleC moderator
    6 months ago

    @dan122 best wishes to you as you move forward with a Stem Cell Transplant. I had one 4 years ago the road is long but definitely worth it! Have you checked out some of the SCT articles on here? – Elle

  • Dan122
    6 months ago

    Thanks Elle,
    I will check those SCT articles.

  • Survivorx6
    6 months ago

    After battles with Hodgkin ‘s lymphoma, DLBCL, Follicular, and a carcinoma and three of them in stage IV and a stem cell transplant that saved my life; the Follicular still worries me. Advice from my favorite doctor that makes so much sense, be happy and enjoy life! We’ll deal with it if it happens! But much easier to say than actually do. Not a day goes by that I don’t think about it, but grateful for every day!

  • Ann Harper moderator
    6 months ago

    I also have a slow growing cancer. I know exactly what you mean when you say you’re not sure what to expect next. So like you, I try to live my life and enjoy each day. No matter what – that’s important!

  • Yolanda Brunson-Sarrabo moderator
    6 months ago

    You know it’s now the case that cancer (and the many forms) is being treated like any other typical disorder. The root of a lot of these rare cases is not being thoroughly looked at. Yes, managing these conditions we’ve come a long way but now it’s like blood cancer is in the same category as diabetes, and other “Chronic conditions”. I’m not sure if that’s a good or bad thing, but I know that although all of those drinks are offered at the bar, that doesn’t mean we have to sample each drink.

  • Ann Harper moderator
    6 months ago

    Yes, in some cases cancer is considered a chronic disease. While I’d prefer not to be sitting at the bar at all, since I’m there I’m going to have a drink and ignore that guy at the other end. Lol!

  • Yolanda Brunson-Sarrabo moderator
    6 months ago

    @annharper LOL -I hear you! Yep, I’ll have that Mojito while listening to some music 🙂

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