• anyone started to keep journal after cancer diagnosis? If yes, what type of things you wrote down??

    Asked by cranburymom on Tuesday, August 7, 2012

    anyone started to keep journal after cancer diagnosis?
    If yes, what type of things you wrote down??

    I start to write down many things - and find it difficult to keep track on these many things.
    So I decided to create a cancer jounal for patients once I feel better.
    For example, small but bounded notebook, so portable and won't come apart. Places to hold information brochures, cards from friends/family, reference tables for when to call doctors, a list of resources to get help, and things to remember to bring @ surgery, infusion center, etc.
    I also found inspirational phrases spread around the journal helpful. Love to hear your thought.

    thank you!!!

    26 Answers from the Community

    26 answers
    • Cheryl2's Avatar
      Cheryl2

      I have kept a journal for about 15 years. I started when I was working with my mother on her life story and realized it would be simpler if she had kept a journal. Since my diagnosis, I find myself including more of my feelings and interactions with my family instead of just the bare facts.

      almost 5 years ago
    • Christiana3's Avatar
      Christiana3

      Hi! Yes I started a journal about 9 months into the chemo therapy and treatment. There is so much information that is thrown at you when this starts that its hard to keep track of everything. I also get copies of my cat scan and blood work so that I can keep going back to look at things in case I have forgotten. Chemo brain doesn't help the remembering so I find this helps me a great deal. Plus if family members have questions it it a big help. Good luck with your treatment.

      almost 5 years ago
    • nancyjac's Avatar
      nancyjac

      I also used my journal to keep track of cancer treatment related info. Thinks like side effects, questions for next onc. visit, etc. Just a couple of observations about your ideas: I would do a little bit of market research. There are several similar products already available. I looked at several of them when I started my journal, mostly for ideas and the types of features that were included. Another thing I would suggest is to not include printed data for things that are likely to change, such as resources contact info, reference tables, etc. Cancer is a fast moving target and information that is relevant today is likely to be outdated by the time you go to print.

      almost 5 years ago
    • GregP_WN's Avatar
      GregP_WN

      I didn't, and didn't take many pictures but now wish I had. I wish I had let my wife follow me every where and take pictures of everything, the good, bad and the ugly. Looking back now at what I went through, I don't have much but a failing memory. I think it's a good idea, and take pictures of everything.

      almost 5 years ago
    • Cindy's Avatar
      Cindy

      Some people came by when I was in the hospital for my cancer surgery and gave me a notebook for keeping my medical information in (e.g., lab reports) and forms to fill out so that I can all my medical information handy as a reference whenever I went to the doctor and many other things. There was also a calendar that I used to track appointments and write in my side affects. This website lists the contents: http://bagit4u.org/whats-in-the-bag/ . I have used my notebook a lot.

      almost 5 years ago
    • leepenn's Avatar
      leepenn

      I kept a blog... and I use the electronic medical charting thing that my health care system does. My blog was for talking about my experiences and keeping other people up to date. The electronic medical chart thing is awesome because I can go back and look at blood results and even the pathology report after my surgery.

      The other thing I did was keep a list of running questions, with the answers provided, in a google doc. Whenever I thought of a question, I would log into the google doc and add the question. Then, at the appointment, I would enter in the answers... In this way, I never lost whatever I was writing on... and I was able to be sure all of my questions were answered at each appointment. It's pretty cool, actually, going back and seeing some of the questions I asked the docs etc... Oh the things I wish I didn't know!

      The other thing - CBM - that I kept was a ride log. I created a google form, and I entered each day's riding. For some days, it was very little. For other days, it was joyously long and fantabulous. It's neat to go back and see how I was riding when... comparing that to my chemo schedule. As soon as chemo was finished, I stopped keeping it though.

      I did not keep a personal journal. I've done so a few times in my life, but it's always very short lived...

      For me, the electronic format was best. I don't like to have a bunch of paper etc...

      Hope everyone has a lovely day!

      almost 5 years ago
    • IKickedIt's Avatar
      IKickedIt

      When I was first diagnosed, I carried a very small notepad that fit into my pocket or purse. Initially, it was our aaction plan of who we needed to tell and in what order, what needed to be done and when, etc. Then, as people offered to help, I started pages for my drivers, my shoppers, my cooks, my friends who offered to take me to chemo. That was very, very helpful since I didn't want to ask someone to do something they hadn't offered to do since it could have meant they might be uncomfortable being asked. Then I had a page for each person and what they had done for me. It was easy to reference so I could write thank you notes, refresh my chemo brain and remember who had done what. That notepad has been put in the box with all of the get-well cards I received.

      Once I started chemo, I started a personal journal where I recorded my feelings, my concerns and the side effects...in particular, the timing of each side effect so I could try and track them and perhaps be proactive in preparing for them and perhaps counteract. I have that tucked away in a desk drawer. I can't bring myself to open that one yet.

      almost 5 years ago
    • jihorn's Avatar
      jihorn

      Hi, I started to keep a journal the day I found out I had cancer. I bring this book with me everywhere I go. I take notes for every doctors visit, and nurses visit. I jot things down while doing chemo. I write down all my appointments in there as well. I can re read my lists and questions for docs and nurses. I also write down how I am feeling on a pretty regular basis. It is also my hope that my journal will help others. We don't have manual in life. Cancer is hard to deal with and if your cancer is not run of the mill it is hard find people with similar situations to talk to.

      almost 5 years ago
    • lynn1950's Avatar
      lynn1950

      I received a little spiral bound notebook with a pen and pen holder from Susan B. Komen Foundation. I kept track of treatments, meds, questions, and phone numbers in it. I carried it with me to every treatment/doctor visit. I just used a paper clip to keep track of where to find info in it. Having an attached pen was really helpful.

      I stopped writing in it once treatment was over, but have recently started journaling again. I just use the 81/2 x 11 spiral notebooks that go on sale this time of year for back to school.

      almost 5 years ago
    • Dexter65's Avatar
      Dexter65

      I did start a journal. There is a website called living file: http://www.livingfile.com, it is an online journaling website. It is totallay private and easy to use. I find it to be much easier to use the traditional paper and pen.

      almost 5 years ago
    • rickbr's Avatar
      rickbr

      Google cancer101 and look at their website. They have free stuff including a journal which is excellent

      almost 5 years ago
    • cjtigers' Avatar
      cjtigers

      Check out the website for the Livestrong Cancer Foundation. They have a free cancer journal that I hear is excellent and all you have to do is pay for shipping and handling.

      almost 5 years ago
    • Beaner54's Avatar
      Beaner54

      I have a day planner that I use to keep track of appointments, etc. but do not journal on a daily basis. Although chemo brain is tough on the memory, I don't think this journey will ever be forgotten. I find that writing about it only makes me think more on it and that consumes to much of
      my energy.

      almost 5 years ago
    • MarnieC's Avatar
      MarnieC

      Great question! You inspired today's blog article: http://marnieclark.com/how-to-journal-your-cancer-experience/
      Lots of great answers here! xoxox

      almost 5 years ago
    • attypatty's Avatar
      attypatty

      Dear Cranburymom:
      I started writing a journal the day I was diagnosed. And I wrote in it every day from then until the end of my treatment - sometimes for hours, sometimes just a few minutes. Since I finished active treatment 2 months ago, I write in my journal several times a week, but not every day. At the start of this all, it was a revelation how much the journal writing helped me. It was cathartic, expressing my every emotion, the good, the bad, the ugly. I also wrote fairly specifically about the physical aspects of my cancer - what side effects I was experiencing that day, what treatment I had, what meds I took, etc etc. Looking back I am so glad I did this. It's quite amazing how many details I have forgotten - when I re-read my journal I can see just how far I've come. I would advise anyone to begin a journal right away and just write, letting everything flow out onto the paper or onto the screen, writing without inhibitions, without restrictions, without thinking almost. Just letting all those feelings, fears, hopes, questions, funny things, sad things, whatever seep out of your mind, your soul, your heart into words that later on will give comfort.
      I usually say "Fight On" but this time, it's
      Write On,
      Attypatty

      almost 5 years ago
    • Tania's Avatar
      Tania

      Hi cranburymom,
      I am a breast cancer survior of three years and I started a journal. I am really glad I did because when I look back I can't believe I went through all I did. I even took a picture of the radiation table and put it in my journal. That machine saved my life and I am very greatful we have it. I have a picture of my last day of radiation and went out to dinner with a friend to celebrate. Since day one when I was told I have cancer. Keep yours you will be amazed too when you look back and you can help others. You are not alone. Let me know your progress. Hugs, Tania from Miami, Florida.

      almost 5 years ago
    • bcsucks2012's Avatar
      bcsucks2012

      I started a facebook page cataloging my journey it has helped a lot... I have had people give me tips and motivation that I don't even know just heard about my battle and wanted to give support I am very grateful that I started it and would suggest something like it for everyone going though this ... you never know who you will meet and what insight they have that might be helpful ... also it gives you something to look back on when you have down days and see how far you have come

      almost 5 years ago
    • bcsucks2012's Avatar
    • Bac's Avatar
      Bac

      I was diagnoised Feb. this year and started in May to journal. I find it therapuetic, you know when you just need to get it out of you how you are feeling (good or bad or inbetween). I try to update it every month unless I am having a "REALLY" tough time then it is whenever. For me, it is helpful to at least vent in this fashion instead of holding it in.

      almost 5 years ago
    • scootersmom's Avatar
      scootersmom

      I did. I started after my first group session. I had heard that it was helpful and I found it really is. I write down everything that comes/came to mind during this long road trip. Some of the things were quotes that I came across, thoughts that I had, realizations, etc. I shared many of these with others and it helped not only me but them as well. It would be nice if this whole cancer thing came with a handbook but it doesn't. The best we can do is to "wing it" and share our experiences for the next person in order to help them overcome the obstacles that we call face.

      almost 5 years ago
    • carrie14's Avatar
      carrie14

      I have a blog that I update often. It's very therapeutic for me and helps me to remember what's going on. I also try to keep a separate journal for myself only for about a week after my chemo. I write down what time I take medicine, what time I got up, took a nap, what I eat, etc. This has helped me for each treatment afterwards to know what to possibly expect. I'm doing the blog for myself but also for others to follow me through my journey. I have many friends and family all over the place and it helps them to keep up with me. I also feel that if I can help others understand what it's like to go through treatment and help them to help me, or someone else, then I'm doing a good thing.

      http://carriecrusade.blogspot.com/

      almost 5 years ago
    • nancibee's Avatar
      nancibee

      I started a journal but I haven't added any entries to it recently. I think I focused too much on the negative aspects and the stress that having cancer was adding to my already stressful life. When my family finds the journal a day hopefully far off into the future, I want it to have good memories like the birth of my new grandchild, fun times with my friends, etc.

      over 4 years ago
    • tjmhasmyheart's Avatar
      tjmhasmyheart

      I keep a journal of of my cancer journey.. how I lhave learned to cope, my experiences of learning that battling cancer was more mental than physical for me, and about learning to be positive and hopeful inspite of my circumstances. The journey has been tough and at times scary, but I wouldnt change a thing...

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      Delete.

      over 4 years ago
    • Staceynan's Avatar
      Staceynan

      A wise friend told me to start a dialog on paper between my and my cancer. It sounds strange but it has been one of the most impowering things I have done. I gave cancer a name and we talk a couple of times a week. I write both sides of the dialog and you would be surprised by what I have learned about myself. As horrible as cancer is, it is still a part of our own bodies. I choose to try and make peace with my body and not war. Nothing good has ever come of war.

      over 4 years ago
    • Nancebeth's Avatar
      Nancebeth

      No journal but I wirte a blog
      nancebeth.blogspot.com

      over 4 years ago
    • baridirects' Avatar
      baridirects

      I started a journal right after I was diagnosed to have a place to express my emotions privately. Since I have a DayTimer, I use that to keep track of appointments and the like, and I also have a binder where I keep my test results, information on support services, my cancer team, and all that. I highly recommend doing that - I recently applied for temporary disability through Social Security, and having that binder was an absolute godsend in answering all the questions involved.

      At some point, there were so many of my friends and family who wanted updates on my progress that I established a site on CaringBridge. For me, Facebook and the like is just too public...CaringBridge permits me to control who sees the information I post, and yet allows me to get the word out to multiple people at the same time. Whenever I update my post, my "crew" gets an email notification, and they can leave notes/responses for me as well. I'm not posting as often as I had been at first, but I do try to post at least once a month.

      almost 4 years ago

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