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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
    3 weeks 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
    3 weeks 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
    4 weeks 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.

  • Elle Crofton moderator
    3 weeks 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
    3 weeks ago

    Thanks Elle,
    I will check those SCT articles.

  • Survivorx6
    4 weeks 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!

  • Carolyn B
    4 weeks ago

    I also have fnhl (and have had earlier stage breast cancer on both sides). I do think there is a qualitative difference between fnhl and BC (not including stage 4 though) due to the incurable part. At least I found that to be the case.

    I found it took time, lots of time, to wrap my brain around the fact that fnhl cancer won’t go away (had BC then 7 years later BC on the other side and fnhl dx’ed in the same year). Originally it took me around 4 years not to think about BC every, single day. I am not there yet with fnhl and I was dx’ed about 8 years ago (although had it much longer than that).

    I also have a genetic based demyelinating peripheral neuropathy. They don’t know what, have had 87 genes tested, it’s the mystery disease. I joke we should all donate blood, make my niece (a genetic counselor) famous by finding a disease and then name it after that side of the family in revenge for sticking us with it LOL. All 8 of us who have this, none have an answer. And we all watch ourselves lose function over time.

    I find that psychologically the “chronic” side of the fnhl and the neuropathy though are different. For me I dread the disability that I see the generation above me suffering from the neuropathy. And I know I am headed there as mine gets worse in ways that affect what I can do nor not do that I used to be able to do.

    But with the fnhl, there is that threat of death. For me that makes a difference. Just like for me that threat of death with the fnhl vs the 2 earlier stage BC’s (that didn’t have very high odds of that and can be cured) was different, so I also find a difference between my two major chronic issues (eg fnhl and the neuropathy).

    WIth the fnhl, for me, it is similar to Edgar Allen Poe’s “The Pit and the Pendulum” story. The plot: guy tied down with razor sharp pendulum swinging back and forth, slowly lowering, going to kill him
    .
    .
    .
    .SPOILER ALERT:
    .
    .
    .
    .but rats chew through the ropes holding him and he escapes at the last minute.
    .
    .
    .
    Except that I am not likely to escape at the last minute unless research hurries up its slow pace of progress and we can figure out why this cancer still progresses even when you are NED (no evidence of disease).

    With fnhl I know the pendulum is slowly lowering even if I don’t look up. I might be holding up a thermonuclear protection umbrella to delude me into thinking I am safe, and some days, as it is still so far above me, I can safely ignore it, but I still know, it is still there, slowly lowering to potentially kill me.

    With the neuropathy I know it will continue to progress, especially since we have no clue what it is so no idea if there is anything that can be done to slow the process. But I also know that while it will make my life more difficult when I am older, it will only make me disabled, not possibly/likely dead. For me that is a critical difference. And my mental health over both is affected by this critical difference.

    Of course there are similarities too (chronic, a PITA, affects life and thus one’s hopes, dreams and finances, somewhat unpredictable making planning harder, won’t go away, etc.), but at least in my case there are differences as well. Your mileage may vary.

  • Ann Harper moderator
    3 weeks 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.

  • Ann Harper moderator
    4 weeks 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
    4 weeks 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
    4 weeks 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
    3 weeks ago

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

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