• WhatNextEmails' Avatar

    Non-hodgkin lymphoma, how did you survive?

    Asked by WhatNextEmails on Monday, March 11, 2013

    Non-hodgkin lymphoma, how did you survive?

    We need your help. This month we are putting together a collection of articles for those newly diagnosed on what actions survivors took to beat their specific type of cancer. Please take a few minutes to share your experiences and advice for those newly diagnosed, and your posts might just get included in our articles. Feel free to share whatever comes to mind. Here are some more specific questions to help get the juices going: What kind of support did you have? Were there things you did that really made a difference? How do you go about finding your medical care team? Who made up your team? What resources did you find that were most helpful to you?

    6 Answers from the Community

    6 answers
    • HeidiJo's Avatar

      I was diagnosed with non-hodgkin Lymphoma via a biopsy that they told me was NOT camcer initially. I woke up from the surgery being told it was cancer. My surgeon made the appointment with the oncologist for me.
      I decided to tackle it head on, we (my husband & I were a team through all this, I said we a lot) decided to give it everything we had because I wanted to get it out of my body and move on with my life.
      I think probably the most helpful thing in dealing with all the info is; we had an expandable folder that we put all the info into, everything we received from the doctor and the insurance company, the pharmacy, everything! It became invaluable. if we needed to go back to anything, it was right there, in the folder.
      I even kept all the get well cards so I could have a pick me up when I needed one.

      over 3 years ago
    • marshala1's Avatar

      My husband was there for me through everything. My faith in God took away my fear. I ate everything I wanted and though I gained a few pounds I was rarely nauseated throughout my R-CHOP regime. I felt really pampered as my husband brought me breakfast in bed every morning. The one time I did get sick, my doctor answered the call immediately and called in a prescription. That was after my first treatment when I overdid it by going shopping immediately after leaving the infusion center. :) My church friends were very supportive, but there was nothing but faith that everything was going to be fine as soon as my treatment was over. And so far it is--15 months and counting!

      over 3 years ago
    • veedub's Avatar

      i was diagnosed in july and started R-CHOP a couple of weeks later, with a shot of Neulasta the day after infusion after the second treatment, because of low
      WBC count. i never felt an nausea--the moment i even felt a hint of it i used a dropperful of cannabis tincture (10% THC, 90% cannnabinoids), and it went away. i also had a bite of a marijuana cookie and a half an ativan tablet to go to sleep and stay asleep all night. i feel very fortunate to live in a state where access to medical cannabis is legal and relatively easy--when i ran out of edibles i would simply go and buy more from the SPARC collective. i don't smoke, btw.
      as for less physical things: my husband was my faithful Sherpa as we made our way up the mountain of chemotherapy, but i also was surrounded with helpful people who gave me rides, made me soup, knitted me hats, and sent me all kinds of spiritual gifts, from reiki to magick to prayers. my daughter came to visit on one of my prednisone crash days and suggested that i turn the experience into a comic book, so i did. i decided to make sure that i did one household task a day, come what may, and out of sheer stubbornness i succeeded in keeping the house clean and the laundry done, to the amazed relief of my husband.
      several people burned candles for me, and i made sure that i did my daily practice every day, even if that was merely lighting a candle. toward the end of chemo, i held a circle during which i cut all of my plastic wrist bracelets from the hospital (which i had saved) into two pieces and had everyone write a directive on one of the pieces. then i would pick one at random each day. the messages ranged from "blog your wisdom", "align with family", "discover yourself", to "visit south america." the directives are still on my altar for me to use as messages for the day. i attended and also participated in one halloween ritual via skype, and had plenty of online conversations with faraway friends.
      ...that's how Witches do it ;D

      over 3 years ago
    • cjnana's Avatar

      I was lucky enough to have a whole posse with me when I was given my diagnoses. My husband, children, parents, a few true friends, and my three sisters. My reaction to really bad news has always been a combination of denial and downplaying the situation to myself. The thing that helped me most with that is my husband's and I's amazing relationship. Sometimeses I think he knows me better than I know myself. He was able to give me room to adjust without allowing me to isolate myself and totally disregard the situation. He was also my filter and translator between family, friends, and my medical team. My medical team arranged itself around me because I was admitted into the hospital on an emergency room visit. After 5 days of tests is when I got the diagnoses. My struggle was becoming comfortable with and trusting my team. It took a few appointments, and some long conversations, but I became to totally trust and feel comfortable with my doc's and nurses. One of the things that helped the most is that my Oncologist was talented enough to recognize my personality and referr me to a counselor who specialized in working with people that had received cancer (or other life threatening diagnoses). She was amazing, and by working with her I became able to embrace my diagnoses and make a concious decision to fight it. I think that is the most important thing that seems to be overlooked. When a person recieves the unimaginable game changer that a cancer diagnoses is, most times the path taken is largely decided on and directed by the medical team. Most new cancer patients go where they are directed to. (This opinion is from my personal experience and what I saw some others go through.) It took me a while to except and embrace my diagnoses, and then to make a concious decision to fight. Going to the treatments and taking the meds described and following docs orders can be performed when a person is still in the robotic reaction phase. That phase is different for everyone. But there comes a moment that crystallizes, and it all becomes real, and becomes a "part" of you. In my opinion that is when the choice of conciously fighting or just stumbling along on a path constructed for you is made.
      One thing that I did that was an amazing comfort for me was constructing my own "chemo kit". There are many different ones that you can by on line and they are great. I took some of their ideas, added my own, and came up with my perfect combination of things that helped and comforted me through my chemo treatments and the days that followed. A special blanket made by the loving hands of my great aunt. My NookColor with my favorite books to read, and with a couple of games I enjoyed, with a screen saver of my favorite picture of me and my husband. I also prearranged for someone to bring me a lunch of my choice for the day, and a short visit. I learned early on that I perferred not to have someone sit with me the whole time. I felt guilty when I would feel drowzy and fall asleep or became ill. When I got home and as I went through the next week or so, I would have my favorite movies or TV shows on Netflix readily available. My husband made sure that there was easy and quickly made meals and snacks at hand. And I always, always, had my "REMI" close to my side. He came into my life soon after my diagnoses as a puppy. As he grew, he quickly learned the different smells of my meds and treatments, and he also learned how to act during different stages. Not that he was trained, we were just connected in a way that rarely happens. He is just two now, and he knows before I do how I feel. And he is never further than an arms reach away. He has been a sanity saver, and at times the only being that I wanted near. If you don't have a therapy pet, GET ONE. The bond that will grow will amaze you. By the way, I named him for my greatest hope at the time. REMI is not short for remington like so many assume, it is short for remission. And here we are! I hope all of my rambling helps someone out there. I sure wish I had known about this sight from the beginning, but am so grateful for it being a part of my life now. Much love to all, Crissy

      over 3 years ago
    • Dawntaylor's Avatar

      Diagnosed in September. Have had a few bad days coping but mostly have peace. No treatments yet but my belief in God is so strong that I'm not worried about it. I've read that it's possible for people to go 10 years and more before ever needing the first treatment. Many changes in my attitude toward things I thought were important, I think this can be a positive journey as far as growth in your relationship with God and others. Through God I just feel deep down that this thing is going to take years to affect me. My pet scan in November showed the mass had gone from being 4.2 cm to 3.9 since the first scan in September. I told EVERYONE! I wanted as many prayers as possible and I pray daily for myself and others and I also take the opportunity to give God the glory for every peaceful day and especially the shrinking of the mass without treatment! Remember, God loves you. Favorite verse (right now) "For I know the plans I have for you." Declares The Lord, "plans to prosper you and not harm you, plans to give you hope and a future." Jeremiah 29:11. Don't get me wrong, I have my days but knowing he will not forsake or leave me makes all the difference. God bless you all, I love each of your precious hearts and souls!

      almost 3 years ago
    • Tonistep's Avatar

      My first thought upon diagnosis was annoyance. I was busy with my life, family, work, travel, quilting, and I did not have time to be sick. It turned out that you can live with cancer with support. My blessed husband who loves me more than anything took care of all the medical decisions. Good thing because my brain did not work as well as it should have. I don't know how people manage cancer without a great care-giver. My daughter told my family and friends about my diagnosis (she was 32 at the time) and she asked everyone to write me a letter telling what I meant to them. She presented these letters to me in a notebook that was named THE LOVE BOOK. She gave it to me as soon as my first round of CHOP started. I cried and have read those letters over and over.

      The support from family and friends through visits, calls, emails, and greeting cards all added to my fight. I feel like if I let cancer get me, then I have let all my supporters down.

      You can do it! No matter what cancer you have, what treatments you go through, just keep a positive attitude and fight on! Remember that cancer takes you on a roller coaster, after every 'down' there is an 'up.'

      Toni 11 months

      over 2 years ago

    Help the community by answering this question:

    Create an account to post your answer Already have an account? Sign in!

    By using WhatNext, you agree to our User Agreement, and Privacy Policy

    Read and answer more non-hodgkin lymphoma (nhl) questions.  Also, don't forget to check out our Non-Hodgkin Lymphoma (NHL) page.