Man standing in front of a group of people. Some people are standing out and others are fading into the background

Things We Have in Common

Recently I had the opportunity to spend a day with several other cancer patients and advocates. None had myeloma nor even blood cancer.  The type of cancers these folks had were across the board. Some had been in remission for a while, some were recently achieved remission, some had relapsed and some were chronic (including me). And I have to say, meeting this group was eye-opening and hugely impactful.

Prior to my diagnosis with myeloma nearly 8 years ago, I had roughly zero experience with knowing anyone close to me who had cancer. Then I was diagnosed with a cancer I had never even heard of. And now over time, I know a fair number of fellow myeloma patients. I have a whole new circle of friends who are fellow myeloma patients.  Additionally, through my volunteer activities with the Leukemia and Lymphoma Society, I’ve gotten to know some people with other types of blood cancer.

We are not alone

Since my diagnosis and over time, my social circle has narrowed quite a bit. It’s my wife, my dog, immediate family and one or two close friends. Everyone else in my circle is pretty much a myeloma patient. And while I knew that the physical challenges from any cancer is unique and difficult. I had come to believe that myeloma patients are dealing with some special emotional challenges that other patients don’t have. We have incurable cancer, we’re typically never in remission and generally what drugs work today may not work tomorrow. It’s a cloud hovering over me that not a lot of people understand.

Well, I was very wrong. Spending a day with other patients opened my eyes to the challenges, both emotional and physical, that all cancer patients face. Fear of relapse, permanent side effects, financial difficulties, social challenges. These are some of the things that can be constant, whether the person is chronic or in remission. I learned there are some real commonalities between us all. There are things we all struggle with.

Circle of survivors, friends

I also learned or perhaps accepted that the anger I tote around for how cancer has changed my life, is more intense than I realized. Before meeting my fellow survivors, I brazenly claimed that my anger motivated me and kept me fighting and that the anger wasn’t necessarily a bad thing. This is partly true, but there is more to it. The anger can also be stifling and debilitating. While the folks I met to deal with the anger of how cancer has changed their lives in different ways, they do all give back to the community and work on their mental health.  I try to give back, but my mental health work might be lacking.  I’ve had a couple of therapists, who do the trick for a while, but I eventually grow tired of the constant suggestions of how to look forward and how to practice gratitude. I agree with this. But I’m lacking the person I can talk to about how mad I am.  Since meeting this inspiring group of survivors, I’m focused, perhaps obsessed, with how mad I am at myself, at others and at the myeloma for how it has changed my life.

But knowing I have a circle of survivors, who are also friends, I can reach out to, is helpful and beneficial. I can’t and we can’t go it alone. Let’s all vow to work on this and support each other.

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

View Comments (10)
  • Nancy
    1 week ago

    Thank you! Thank you! Thank you!
    After reading your words I finally have allowed myself to admit I’m angry! I don’t wake up and see the grass is so much greener and the skies are more blue. In some way I am grateful for the time I’ve been given but I realized anger is what I truly feel. Reading Matt’s word has given me permission to allow myself to say and accept I have a right to experience the anger. I do realize I can’t act out which at times I am sure I’m guilty of but explained it as frustration .
    I am angry that my diagnosis has taken so much from me. I don’t know anyone with blood cancer (which my diagnosis is and isn’t considered a cancer – square peg round hole) and because I’ve moved closer to my healthcare team I have moved away from friends and half my family. I do feel isolated and alone although I live with my sister. Loss of independence, health, financial stability and more is the basis for my anger. I know I need to come to terms with this but it helps to realize I’m not alone.
    Again, thank you. I can’t say that enough.

  • kidsandliz
    1 week ago

    In my personal opinion this gratitude stuff is BS. There is not one single thing I am grateful about with having 3 cancers (breast on both sides, both hopefully cured and follicular non-hodgkin’s lymphoma, indolent but incurable). On the other hand if, for someone to adjust to having cancer they need to find a “reason” they have it, or need to view it as a way to grow thus be grateful they got it for that reason then that is fine with me as long as they don’t force their view on me. For them that may be the impetus they need even though in my opinion there are far less damaging ways to learn life’s lessons than cancer.

    I also found it was qualitatively different having a cancer with no cure vs one that had one. The initial fears, etc. were similar but instead of knowing I might be cured, knowing that at this point in time I won’t be it IS different and I didn’t really understand the difference on a gut level until I had an incurable one. In either case though many feeling, etc. are similar/the same.

    It took me about 4 or 5 years with the first breast cancer not to think about breast cancer at least once EVERY. SINGLE. DAY. It has been almost 8.5 years with fnhl and I am not there yet with that (the second BC kind of got eclipsed by the fnhl dx as they happened in the same year). I think about my future differently since I have an incurable cancer. And although the life span is growing and some people live an amazingly long time with this, the reality is that a number of people do die of it either because of the disease itself or complications of chemo. So since I don’t have enough money saved for retirement since cancer treatment costs have gotten in the way maybe this is a good thing? (um yeah the oncologist didn’t think that joke was funny).

    In some respect we don’t travel this cancer gig as someone who only has unique to them issues (overlap in fears, etc.) as there are many things we have in common with at least some other folks with cancer. But in other respects our paths are unique to us because we are unique individuals facing this cancer crap and come to it with different backgrounds, expectations, medical history, cancer markers and outlooks, responses to chemo and side effects, support or lack there of from family and friends… etc. etc. etc.

    We also want and need some similar kinds of support and some different kinds of support. Some needs and wants are pretty common (what is the cure rate, how hard is the chemo, what can I expect, how do I deal with this with family/friends/job blah blah blah) and some are different. Tell me you are going to pray for me and it is eyeball roll time. But for some others that is very meaningful to them. Use the war words about cancer and again, eye roll time, but it is helpful to some folks to think about it this way. I shun the pink marketing machine of BC because cancer is what I have and not who I am and I shouldn’t be branded for life, like the marketing machine wants us to be, just because I had it. But other folks appreciate that the marketing machine does a lot of social things while trying to raise money.

    I think it is helpful to have contact with folks with similar dx’s as often they are a wealth of information that is disease specific, and sometimes mental health specific with this emotional earthquake that comes with a cancer diagnosis. On the other hand anyone with a major cancer likely is traveling, at least partly, the same or similar path and it can be useful to look down their path too for what has helped, how they cope.

  • Crystal Harper moderator
    2 weeks ago

    I’ve found that some of my closest friends are people who have been diagnosed with cancer. There is just something so special about being around people who understand exactly what it’s like to hear those words and I’m so grateful to have them in my life. Dealing with cancer can be such a lonely thing but to be reminded that you’re not alone is such a comforting feeling. Wishing you nothing but the best in your continued fight!

  • Ann Harper moderator
    2 weeks ago

    When I was first diagnosed I was scared – petrified actually. My mother had died from lung cancer and my thought was that dying would be my fate as well. My husband on the other hand was angry, very angry and he couldn’t understand how this could happen to me. I have never been angry, even when my doctor said there was nothing they could do right now. Instead I researched and changed my whole life and diet. It helped and the growth of my cancer has slowed. Sometimes I miss my old life, but then I think about how much better I feel. I guess the reason I dont get mad is, it won’t help. This is the hand I’ve been dealt and I have to make it work. I hope you can find some relief for your anger. It’s not a healthy emotion. Maybe your friends will be able to help you through it. Good luck to you.

  • Jim Smith moderator
    2 weeks ago

    Being an introvert I tend to avoid large groups of people and prefer family and a couple close friends. But perhaps your post will inspire me to get out there and meet others with leukemia. Thanks for your post. I wish you well.

  • Ann Harper moderator
    2 weeks ago

    Sometimes allowing others in does help, but sometimes your circle of friends and family are all you need.

  • Yolanda Brunson-Sarrabo moderator
    2 weeks ago

    Matt, it’s very hard to get a handle on this at first. I’m happy you’ve found a network to vent and commune with. I think everyone has their varied approaches in how to get through. Cheers to supporting each other! Best!

  • bluchs
    2 weeks ago

    Matt, Thank You for your insight.
    I do feel sorry for myself, to much at times.
    But I can be watching the news, and see about a cancer survivor, that has gone through so much more than I have.
    And well, I will get teary eyed, and wonder, why must they suffer so, and why are they able to be so strong?
    Cancer treats us all in very different ways.
    Although, we all go through very similar experiences.
    I lost My mother, 3 aunts, 1 uncle and 3 cousins to cancer.
    So, Yes, I did know many who also fought off this cancer, all of them eventually lost this battle?
    But I was just about to retire, when it struck me.
    I see kids, or young people, even on this web site.
    And I Pray for them, My God, at least, I was able to live until 62, cancer free.
    Fatigue, keeps me from joining any support groups, they all meet after 6PM, I am in bed and worn out by then.
    So finding this venue to read about others, and to share my feeling is a wonderful opportunity to vent.
    I have met a few people in person, at the cancer center, but it is not an appropriate time to share, we are all going through treatments, and trying just to cope with the moment.
    So, for now, this is my circle of friends and survivors.
    And I Thank God for this opportunity to share, it is all I have right now.
    Your right Matt, we are not alone.
    Your words have helped me, I Pray that in some small way, I may also be able to help someone else cope.
    It is so very hard.
    God Bless all who read the blogs on this site.

  • Ann Harper moderator
    2 weeks ago

    I’m sorry you are going through so much. I’m happy you have this site to share and interact with others. Good luck to you as you go through treatments.

  • Yolanda Brunson-Sarrabo moderator
    2 weeks ago

    Positive vibes your way my friend. We’re so happy your in our group. Best!

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