Cancer Survivor working on Design Thesis: Needs your help!

spotthedot
spotthedot Member Posts: 5
edited March 2014 in Caregivers #1
Hi, my name is Amanda and I was diagnosed with Stage 4 Hodgkins Lymphoma five years ago. Thankfully, I am doing very well!

I am now a graduate communication design student at Pratt Institute in Manhattan. For my thesis project I would like to create a welcome binder for new cancer patients. Inside would be information about what to expect while receiving treatment, charts and forms to help patients stay informed, organized and keep track of appointments.

I was wondering if other patients or caretakers think this is a good idea and what information would be useful.

Thanks for your help!

Comments

  • mswijiknyc
    mswijiknyc Member Posts: 421
    wow this would rock
    this would be a wonderful idea, especially if it could be cancer specific. Kind of like a ghoulish welcome package. And would be a place to store all info, papers, notes, calenders . . . .

    I like it. I think what would need to be inside would be like a cover sheet or a main page that would be all of the people involved. Like a babysitter's crib sheet kinda? "your oncologist is ______ his number is ______ his after hours number is ______ " so on with radiologist, dietician, phys therapist, speech therapist, etc. and if the binder is large enough, put in a couple folders for places to put papers until they can be hole punched.

    duh me - I should have thought of this :) thanks for the great idea and good luck! You got an A+ from me
  • Barbara53
    Barbara53 Member Posts: 652
    yes yes yes
    I've been a cancer caregiver for two years, and if all you did was outline the chemo side effects and such for caregivers, it would be a worthwhile project. My mother's oncologist has patients and families attend a chemo education session, but I've learned that many oncologists don't tell patients or family doodly-squat.

    Hope is so important for patients, whereas caregivers (not takers) desperately need to know what to expect, especially if it's unpleasant. Had my mother not had visiting nurses after her debulking surgery and first-line chemo, we would have been babes lost in the woods. I'm a researcher by trade with we have animal and people doctors in the family, but I don't know how regular folks get the information they need to function day to day as effective caregivers.

    Sorry to rant. I'm excited about your project!
  • nyogus1
    nyogus1 Member Posts: 30
    Use one now.
    The Cancer Center we are associated with for my husbands illness provided a book on the day of diagnosis. It is wonderful and I have used extensively. It provides a place for you to record information:

    - Doctor names/address/phone/fax
    - Calendar for appointments
    - A record for each appointment where you can record: who you saw, where it was, what was done (i.e., CAT Scan, Chemo treatment, Dr. visit, etc.), questions you want to ask, symptoms new since last visit, information the Dr. gave you at this visit about you condition, new medications prescribed at the visit, changes to anything we need to do.
    - Local support group addresses/phone numbers, like Cancer Wellness Centers, Services to help transport patients to treatment, billing adovocats hotlines to help you sort through billing question/discrepancies with medical providers, nutrition services.
    - Place to record a complete medication list, including pharmacy names/phone numbers.
    - Listing of National Cancer resources, websites, addresses, like American Cancer Society, etc.

    There are other sections of the book that I haven't used as much as the above. The book has helped tremendously to stay organized. When all the EOB's (Explanation of Benefits) are received for services from the Insurance Company, I can validate that what we are being billed for is accurate based on my records. I can also validate things like: last August we reported this symptom, Dr. recommended this, and it has now returned.

    Nancy
  • Susiebelle
    Susiebelle Member Posts: 15
    It's what I do
    Spotthedot,

    What you are talking about is what I do.

    I have a binder for chemo. It has all the information in it on my husband's current chemo. He is on his third kind. It has phone numbers for during and after hours help, the particulars of his chemo, including side effects and when to call for help.

    I have a separate cancer binder. It contains the receipts from every doctor visit, lab visit, test visit. It has sections for lab results, other doctor's seen, a pathology section, test result section, ER visits and presription info.

    In addition to this, we keep a journal. My husband is currently on a brand new chemo, and is the only one in our area on it. We decided to keep the journal in order to help either other patients who might be put on this chemo, or the chemo nurses, or even the oncologist. We report to the chemo nurses every three weeks, and they love to know how things are going. The more we learn, the more they learn. It is helpful to everyone.

    I could not keep everything straight if I did not do this. There are too many drugs with too many side effects. Too many visits, and too many tests.

    Congratulations on not only your cancer survival, but your education. They are both marvelous accommplishments. What you are talking about doing for your thesis is a grand and compassionate idea. I wish you luck with it. Helping someone else set up a system for this in indeed thesis worthy.

    I wish you the best of luck with it. Please keep us informed on how things go for you.

    Susiebelle
  • spotthedot
    spotthedot Member Posts: 5
    Thanks!
    Hi everyone,

    Thank you so much for your responses! They were all very helpful. I was a little hesitant to start this project, but you all have given me the inspiration and encouragement that I need to continue full speed ahead!

    I'll try to update on the progress of my thesis. I have until May to complete it, so I have plenty of time to get it right! If you think of anything else that can help, please let me know!

    For others reading this, please don't hesitate to post! The more opinions, the better!

    Thanks everyone!