In Praise of Support Groups

In Praise of Support Groups
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“My doctor told me, ‘If we can keep someone alive for 5 years, we can keep them alive for 50.’”

Someone wrote that in a post in an online support group I belong to. It was about a year after I was diagnosed. And it was probably the most hopeful thing I have ever read.

In this column, my goal is to talk about the things that have given me hope over the 10 years as a follicular lymphoma patient. Probably the first thing I ever took hope in was that support group.

When I joined a group

Hope isn’t about certainty. It’s about possibility.

The few weeks after I was diagnosed was the darkest time of my life. I worried about my wife and kids, and I broke into tears every half hour or so. My wife suggested I join a support group.

There was a lymphoma support group at a hospital nearby, about 15 minutes away. Unfortunately, it met at 6 p.m. on Thursdays, so I decided not to do it. I was so on edge about everything. Even the thought of driving a short distance at rush hour just stressed me out. It was the opposite of what I needed.

So, I searched online for other support groups nearby and found an online group. That intrigued me.

Online support groups like this one aren’t really support groups the way a face-to-face group is. It’s a message board. People can write their thoughts or questions, and others will answer. You’re not in the same room with them, but it seems like no matter what time you’re online, there’s always someone there to respond.

I joined the online group, and I lurked for about a month. I just read what other people were saying and others’ answers. When I finally wrote something, it was to say thanks to everyone. This is part of my first post, and I think it sums up really well what makes a support group so great:

“Just reading your posts has been helpful, especially the NHL Stories thread. Heck, even reading your signatures, seeing your histories, has been helpful. As I’m sure you all know, it’s nice to know you’re not alone. You’d be amazed at how many times I came to the board over the last month to ask a question, and found that it had just been asked and answered in the last day or two.”

It’s amazing how when you’re that far down you can get hope just from someone’s signature — that little description of when they were diagnosed and what treatments they’ve had. Just seeing that someone with my disease had been around for five years was a lift.

I still use groups

I don’t write much on that group anymore, but I check in every day. I read about people I had met years ago and find hope when I see they’re still OK. I find information about clinical trials and new treatments. I read about other peoples’ experiences. And even after 10 years, someone will give me a new shot of hope, like that person I quoted at the beginning. I’ve read enough about follicular lymphoma treatments to know that what she said is true. But hearing someone else say it makes it seem even more real.

I’ve joined a few other online groups since then. Even Lymphoma News Today can be a kind of support group. Using the comments section, you can interact with columnists, ask questions, and share experiences.

So, whether they’re face-to-face or online, support groups, in whatever form, can be a huge help. The hope comes from connecting with others who have been through what you’ve been through.

***

Note: Lymphoma News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lymphoma News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lymphoma.

Bob is both patient and advocate. He was diagnosed with follicular lymphoma, a slow-growing but incurable blood cancer, in 2008. Since then, he has used his blog, Lympho Bob, to offer hope to other FL patients. A writing teacher and married father of three, he enjoys gardening, music, and travel.
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Bob is both patient and advocate. He was diagnosed with follicular lymphoma, a slow-growing but incurable blood cancer, in 2008. Since then, he has used his blog, Lympho Bob, to offer hope to other FL patients. A writing teacher and married father of three, he enjoys gardening, music, and travel.

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17 comments

  1. michellemcdermott says:

    Hi Bob, Such a nice article you’ve written on support groups. As a FL diagnosee myself, I have found support , resource information on this disease, and positivity & humor in your LymphoBob blog postings. I do check into the LLS group on a somewhat regular basis to look at postings that relate to my own issues but, your blog is what keeps my head straight about this disease. Your ten years & counting since diagnosis, is the clap on the back that keeps me smiling and ready to fight.
    Rock on Bob,
    Shelly

  2. Wayne Schlapkohl says:

    Hi Bob,

    If this link is still active (your post is now months old!) Would you be so kind as to let me know what online support groups you discovered. I was diagnosed with indolent follicular lymphoma a bit over 5 years ago and put on watch and wait, but my oncologist as just asked for a CT scan and called me in. I’m nervous of course, and would like to know what this all means.

    • Hi Wayne. I’m sorry to hear about your diagnosis. I know, even after 5 years, any changes can cause anxiety. I hope the scan results give you good news.
      I’ve been in a few different groups, but the two that have worked best for me have been 1) https://forums.lymphoma.com/ This is the one I have been on for over 11 years. It’s for all non-hodgkin’s lymphoma, not just Follicular, but there are lots of FL patients on there, and even the non-FL folks are very supportive. It tends to be fairly science- and research-based, which I find very helpful. The other is a Facebook group (if you’re on Facebook), called Living with Follicular Lymphoma. Less science-based, with lots of opinions about alternative treatments, which I personally find less helpful. But the people in the group are very supportive, very wiling to share their experiences, and very good about cheering one another up on bad days. I hope one or both of them are helpful to you. If not, there are others out there.
      Good luck. Bob

    • Hi John.
      I’m afraid I don’t know the Bend area very well. (I was there once a few years ago — beautiful.)
      I did a very quick search for you, and the Survivorship office at the St. Charles Cancer Center does offer support groups. I don’t know anything about them, so I can’t tell you if they are good or not, but you might want to give them a call and find out more: Survivorship contact: 541-706-2969.
      Good luck finding some face-to-face support. Online groups can be very helpful, too.
      Bob

  3. Nancy Moushegian says:

    Hi Bob,
    My name is Nancy Moushegian and about one week ago I have been diagnosed with Follicular Lymphoma. I will know of all my test results this coming Friday and will receive chemotherapy on Monday, Sept. 9th for 5 months. Yes, I am afraid because I have 4 grandchildren and want to see them all graduate high school and go on to college. I feel like I just received a death sentence. I’m trying to be positive, but do you know of anyone who has had this type of cancer and still living for many years? I have not yet fully accepted this and feel sad. Can you tell me something positive from other feedback which you may have received. Best regards.

    • Hi Nancy.
      I’m sorry to hear about your diagnosis. I know all too well that the first few days after hearing the news are scary and confusing. I feel for you.
      Yes, many people live for a very long time with Follicular Lymphoma. I personally am coming up on 12 years since my diagnosis, and many people live for years with the diagnosis. It is often a slow-growing cancer that responds well to treatment, and there are a number of treatments available.
      I’m not a medical doctor, so I can’t give you medical advice. But I can make a suggestion: when you get your test results, as how important it is that you start treatment immediately, and if there is time for a second opinion. Follicular is not typically so aggressive that you can’t hold off on treatment long enough to have the test results looked at by another expert. I don’t now where you live, but if you have a research hospital nearby, a second opinion might be a good idea.
      I hope your test results are god, and you’re able to find some peace.
      Bob

      • Rachel F says:

        I just found this article today and your “still here!” comment made me gasp with joy! I am a year out from my follicular lymphoma diagnosis and I am on watch and wait. I was just starting to relax a bit and was getting ready for rituximab when the pandemic hit. My anxiety is high right now and I really needed this little boost. I am going in search of these online support groups. I stayed away for a long time because I was scared of what I might find, but I need people who get it. Thank you!

        • Hi Rachel. Yes, still here. I’m writing less for this site, which is really to bad because it’s such a great community here. No time, unfortunately. But I do keep an eye out for comments, and try to reply. I’m sorry you’re feeling anxious. It’s not a fund time for anyone. I do hope you’ll find a support group online. They can be really wonderful in helping you see that you’re not alone in what you’re feeling, physically or mentally. Good luck with things.
          Bob

  4. Cecilia Wong says:

    Dear Bob

    I am meeting with my oncologist tomorrow to see my repeat petscan. He suspected “something”. Words that scare me!!

    I was diagnosed in August 2019 with follicular lymphoma. Went thru radiation and Rituximab treatment. Was given all cleared in 2019. I am devastated that dr seems to think I have something again. I am sooooo sad and scared right now. I dont know what to do.

      • Janet Mayen says:

        Hi Bob & Cecilia,
        My first time here. I have follicular lymphoma & was diagnosed in Oct 2020. I am receiving Bendamustine & Riguximab. I got a CT scan yesterday and should know the results this coming week to see how it has affected me when I see my Dr. I have bad side effects on this combo, but am making it through this far. I too am worried that after treatment it may return again. I’ve been on this for 4 months & I believe he said it may take 4 more months until I am through.
        It messes with my nervous system & now my skin & scalp keeps peeling. I get so nervous the first 2 weeks after treatment that I feel worn out & try to relax after the effects. By that time, I’m going back through treatment again.
        I’m worried about these side effects because it says in my treatment plans, that if those symptoms occur I should notify my Dr. ASAP. I’ve told him all effects, but he tells me other women have told him as well, but bare through it & they are in remission now. So maybe, I’m just too worried and just fear things more, as I do with other things. The worst is because I have anxiety disorder already.

  5. K. Potter says:

    I just finished my fourth round of Rituxen/bendamuscatine and got a clear CT scan (April 2021), which the Doctor was amazed it was 100% clear of any lymph node enlargements but then he wanted me to do two more rounds of chemo…..why, I asked and was not given an answer. As a first time experience of cancer, I expected to be informed of what this whole process was and when asked about what happens after the chemo, I was not told anything about a “maintenance” program of Rituxen every two months forever. Is this common; the continued Rituxen process. I was willing to tough this all out thinking there would be check ups on a regular basis, but no one told me about continued injections. I am beyond any words being hit with this news. Is this the way these oncologists blatantly disregard any conversations preparing a patient of what is to come? He is so “matter of fact” is his appointments with me, I feel all alone. Have others been treated this way? Is this the norm? I am so angry right now. I need to hear from others if they are being treated this way and kept in the dark and then receiving more bad news.

    • First of all, congratulations on the clean scan. That’s fantastic. Second, I’m sorry you’re frustrated about where things are headed now.
      It seems like there are two issues happening. The first is the Rituxan Maintenance. It sounds like you have some “treatment fatigue.” That’s certainly understandable. Rituxan Maintenance is fairly common. The idea is that, after successful chemo, there might be a few cancer cells hanging around that a scan might not pick up. The Rituxan can help clean them up — to “maintain” the good job that the chemo did. For lots of patients, the Maintenance keeps the cancer away for longer than if they just had the initial chemo.
      The second issue, though, seems to be about communication from your doctor. I don’t know why the possibility of Maintenance was never mentioned; maybe since he was “amazed” by the clean scan that he wasn’t even thinking about Maintenance when you first started treatment, and now that there’s a clean scan, he has considered it. But even with that, it sounds like there should be better communication with you about possibilities and scenarios, and what might happen in the future.
      But here’s the important thing to remember: You don’t have to do Rituxan Maintenance, even if it’s what the doctor recommends. You had a clean scan, and if you want to take a break from treatment, you can. It’s your body. Lots of people who are doing Maintenance have decided to stop, or pause, during the pandemic, because it can weaken the immune system, and make you more vulnerable to infections, including Covid, and could also make a vaccine less effective. You need to have a good talk with your doctor about all of the risks and benefits of Rituxan Maintenance, and if he’s not willing to do that, then tell him you want to get a second opinion, and then find someone who is more willing to explain those risks and benefits. And then make the choice yourself, knowing that you are fully informed.
      Good luck with this. It’s hard to be your own advocate sometimes, but when you are, I think you’ll be happier with the choices you make.
      Bob

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