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Living with Low-Grade Non-Hodgkin Lymphoma

Living with blood cancer in a “watchful waiting” mode is one thing when you are first diagnosed. It’s quite another several years down the road. You evolve as the years pass, as you figure out how to handle this dynamic. In the beginning, the situation may dominate your thoughts, after all it’s cancer, the Big C.

You may begin to tire more easily, lose weight and have less energy. The night before your regularly scheduled blood test or scan, you might go a little crazy if you have an imagination like mine. It becomes easier as time passes. It’s a very personal quest, this journey of learning to live with your diagnosis. You have to work on yourself. I have found that journaling, prayer, meditation and practicing mindfulness helps. I have developed a philosophy for myself that helps in my striving for happiness and contentment. I have become more empathetic, realizing that everyone has struggles.

I am 72 years old, and this is my 9th year of watchful waiting. I have no idea of when or if I will have treatment, could be in a few months, or more. But I’m okay with watchful waiting at this point. I’ve taken up art, a great way to express yourself and your feelings. I’m pretty happy and enjoying life.

As bizarre as it may sound, sometimes it seems as if the universe has given me some gifts along with this disease. Does anyone else feel this way?

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

  • eastern74
    3 months ago

    Thank for sharing ,,…I am 65 years old and I was diagnosed last August with low grade Folicular Lymphoma. I am also on “watchful waiting “ and yes the first 4 months were very stressful. When they did a second scan in December , the lymphoma had double in size so they repeat another scan this past March and it had remained the same size. I will see my doctor in June and will have another scan in September. I have no symptoms and I feel great . But yes the way I think about my life has totaly changed. I was going to work two more years and I decided to retire in June . I practice Yoga 3 times a week and I also go to a Cardio and strength class twice a week. I have started working on my financial planning and a Trust just to make sure everything is in order . I love to travel so I just got back from a two weeks trip to Egypt and Turkey and God willing I’m planing another trip in September . I don’t know how long I have before treatment is needed but I don’t want to live my life just waiting for it. I want to make everyday count because I know that everyday is a gift . And yes I absolutely agree with you … I feel that I have been given the gift of awareness of the importance of time and how to make it count. Somehow I feel at peace and I pray I can also stay in “watchful waiting” for a long time

  • SusanB
    3 months ago

    I am 73 years old and in my 3rd year of watchful waiting. It is helpful to me to read that someone is in the 9th year of “watchful waiting”! Given the blood tests I do every four months, I can say that I remain quite healthy, and I feel good. Often I forget I “have cancer.” Because of this disease, I retired two years ago from work that I loved, so I could have more time with my retired husband. The first year was tough, but now I love being retired. Each day is a gift. I do agree with you–that the universe has given me some gifts along with this disease.

  • Outlander
    3 months ago

    Sorry for such a late reply, as I have just joined. I have stage 3 NHL, diagnosed in May of 2028. Did 4 rounds of chemo, and it seems to have worked, but now I’m in the “watchful waiting” mode. I have no symptoms except for the beginning of night sweats. I guess it’s easy for me to cope by pretending I don’t have NHL since I have no symptoms. I try to eat healthy and work out, so I hope that’s keeping the NHL in check. I’m not letting it define me. I feel that my diagnosis has given me the “permission” to make the most of my life…to go see that concert, splurge on a weekend getaway, etc. YOLO, right? 🙂

  • amanwhocares
    3 months ago

    I too concur with your experience. 12 years for me now. I liked the way you wrote this too.

  • Ann Harper moderator
    5 months ago

    I too feel that way. I have cleaned up my life and feel calm. In some ways my life is better now. Thanks for sharing.

  • Anthony Carrone moderator
    1 year ago

    Hi Texananana, I love that you have picked up so many ways to keep yourself striving for happiness and contentment! I found many of the same things help me enjoy life and keep me happy – especially the art and meditation. What kind of art have you been working on? I wanted to share with you a couple articles our advocates have writen about journaling and another about watchful waiting. Thank you for sharing your story! -Anthony (Team Member)

  • Anthony Carrone moderator
    1 year ago

    Also, I want to connect you with @bobtalisker who wrote the article attached above on watchful waiting. He may be able to weigh in on your question! Best, Anthony (Team Member)

  • Bob McEachern
    1 year ago

    Hi Texananana (great screen name!). I do have days when it seems like I have been given gifts, along with some days that it definitely does not seem that way. Those rough days were more frequent soon after I was diagnosed. I was less patient with the world then. Much better now. Probably the biggest gift is that I find it easier to say No. There are things I want to do, and things I don’t want to do, and I have learned to focus my time and energy on the things I care about. I’m glad to hear you are doing so well on Watchful Waiting, staying happy and healthy and enjoying life. I wish you many more years of that.

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