Tag Archives: Writing and Health

The Cancer Journey, Part Two: What Goes in the Bag? June 19, 2015

Is this the kind of bag I mean? Well, almost as much fun.

Is this the kind of bag I mean? Well, almost as much fun.

The Bag

I’m not talking about a metaphorical bag here. You are going to need a real honest to goodness bag that you truly love. It should be as large as you can handle, maybe a large postman style, back pack, or beach bag. Splurge on this. It will be your companion throughout your journey. It should be washable, at least wipe-down-able, as it will be entering into all kinds of compromising situations—everything from car floors to public restrooms. Be sure it has at least two separate compartments and a zippered pouch for smaller valuables.

What Goes in the Bag?

  1. The first and most important item is a journal. Your journal will be used at doctor’s visits, during hospital stays, chemotherapy and or radiation sessions, and in all manner of waiting rooms, not to mention while reclining at home on your most attractive and comfortable piece of furniture.
    1. Regarding the journal
      1. Date every entry
      2. Write down every question you can think of to address with your oncologist, nurses, family, and for your personal research
      3. Freewrite about your symptoms, reactions, and all the fears and feelings, good and bad, that you experience.
      4. List your intentions, hopes, and everything you are grateful for. And yes, there is always something to be grateful for. Add to this list often!
  2. Colored Pens and Pencils (Any and all types you like, possibly including a Fountain Pen)
    1. They are fun!
    2. You can used them to highlight things you don’t want to forget to address. This may become increasingly necessary if you fall into the chemo fog that afflicts many patients: forgetfulness, confusion, sleepiness, and staring off into space for long segments of time, thinking about—absolutely nothing! Don’t let this scare you. I think of this chemo fog, or chemo brain, as a sort of cushion for your mind, a valuable stress reliever.
  3. The nicest lotion you can afford. This goes for men, too! Perhaps several different types, for example, rosemary or lavender stress balm to rub on your temples, hands, and feet. Maybe some peppermint, or eucalyptus.
    1. Check into essential oils and their uses. They can be added to any plain “base” lotion.
  4. Lip balm or moisturizing lipstick
  5. Small comb or brush. This is for the days you actually have hair. Keep in mind that not all treatments cause hair loss, but if yours does you can use the space for something more appropriate, such as a jaunty hat.
    1. You might think about getting a super short haircut before beginning treatment. I did this rather late, but it gave me a real boost at the time and my new hair came in thicker and in lovely shades of caramel and silver. I’ve never gone back to coloring it.
  6. Baby Wipes. Essential.
  7. Reading Materials. Your attention span, ability to focus, and mood, will probably fluctuate quite a bit. I found keeping a wide variety to most helpful.
    1. Magazines
    2. Novel
    3. Inspirational/Self Help/Health: When I found myself wondering if I was going to die, I read some lovely books on the afterlife. I even found myself at one point almost looking forward to the moment when I could put all earthly cares aside and walk into the light. While this was a joy and relief to me, it may not have the same effect on you.
      1. Choose your literature wisely. Avoid anything you might construe as negative or depressing (unless that’s what you’re looking for, of course!).
      2. It’s your mind and your spirit; you must decide what is right for you.
    4. Cancer-related literature. This is deeply personal. Some of us want to read everything we can get our hands on about our illness, others avoid it.
      1. My favorite book on cancer during my illness was (not surprisingly) The Journey Through Cancer by Jeremy Geffen, MD. It really spoke to me in a loving, affirmative, and informative way.
      2. Cure magazine is filled with good articles and is free of charge to every cancer patient.
      3. For a funny/touching coming of age novel involving cancer patients, I adored John Green’s The Fault in Our Stars.
  8. Cell phone. You know what to do with a phone, but also consider these internet sources:
    1. Caring Bridge.org is a private and free site for anyone going through any health crisis. They provide an area to share your story, an online journal, a visitor’s tab where your loved ones can say hello and leave personal messages, a link page for resources you can customize, a photo gallery, and more. I depended on my Caring Bridge journal to serve as a safe and supportive way to inform my loved ones and organize and understand my own journey, and it made it tremendously easier for my caregivers.
    2. Specific online support groups for your diagnosis can be wonderful.
  9. A lovely soft pillow
  10. Water Bottle. I couldn’t bear anything chilled during chemo. I drank room temperature water (sometimes the flavored kind).
  11. A Prayer Shawl. Many faiths organize prayer shawl groups to knit or crochet shawls for those who are ill or in any situation where comfort needs are paramount. I was lucky to receive two of these as gifts during my treatment. Just knowing they were made by hand with love and prayers in every stitch made me feel safe and loved. I often slept in them, and always wore them during treatments. Your caregivers can find these online for you if you aren’t given one by a local organization.
  12. Electric Heating Blanket (or any cozy blanket). Cozy for the car, bus, airplane, or whatever doctor’s office you find yourself waiting in. It may surprise you; it did me, but you may find yourself wanting to drop off to sleep in places you wouldn’t have imagined possible.

The first time I saw the recliners lined up inches apart in the brightly sunshine-filled room where I was to receive chemotherapy, and saw the veteran patients snoozing with tubes in their arms, hands, or chest ports, and all of the other paraphernalia attached to that, I thought, “I could never sleep in here.” I found out quickly they put relaxing drugs in those tubes along with the other drugs, and by the second treatment, with my heating blanket plugged in along with everything else, I was nodding off with the best of them.

  1. Hat, scarf, mittens. Head gear is essential. A scarf to wrap around your face on a cold or windy day will be a great relief if you’re on a medication that makes you hypersensitive to the cold as I was. One brisk wind can steal your breath if you’re not covered.
  2. Thank you cards. These help you maintain that all important attitude of gratitude. Dole them out liberally. Use your colored pens! You will find that people near and far, known forever and just met, will show you many kindnesses. Each card you write will bring you a bit of happiness!
  3. Food. This can be tricky. What I could choke down one week, would be torture the next. My dear husband made a mad dash to the store any time I showed interest in any type of food, and was disappointed constantly by my inability to eat the same thing the next day. My friend Sandy actually flew across the country with a potato ricer to make me her grandmother’s famouslatkes. Nothing worked. At every weigh-in I had lost another three pounds. Everything tasted like charcoal.
    1. I didn’t worry about not eating, but it was hard on my caregivers, so I tried.
    2. Fruit was the least offensive food. And water that tasted like fruit.
    3. Health bars, Jell-O bowls, cashews…sometimes.
    4. I ate oatmeal occasionally at home.
    5. If something sounds good, toss it in the bag! Just don’t forget to refresh your supply. If something seems tasteless and nasty fresh, you don’t even want to think about how the sight of it will affect you after it’s been stuck in the bottom of your bag for a couple of weeks.
  4. A sense of humor. This is every bit as important as the blanket and the attitude of gratitude. Without a grin, or a chuckle, or a crazy moment when you laugh at the predicament you’re in, your situation could close in on you. Do not let this happen! Your life is impossibly, unrelentingly important, and filled with opportunity for humor. Sometimes you have to look had to see it, but it’s there.One day your therapy will be over. Please pass along the secrets of your journey to someone new, someone who was like you before you learned everything that you know now. Make a difference and pass on your travel tips. You may never know what your grace provides, but pass your hard found comfort forward.Mahalo. Carry On!

    St. Paul's Cathedral, London

    St. Paul’s Cathedral, London

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