Everything Changes - The Guide to Young Adult Cancer

I did not have a public blog until after I was done with treatment and had already written the entire manuscript for my book.  I have a lot of grim and foul thoughts about cancer and its impact on my life.  These thoughts are not on this blog.  They are in 12 spiral bound notebooks in a big storage box in my closet.  And I intend for them to stay there.

When I was going through treatment I never thought about journaling as a task.  The word alone conjures images of haggard ladies sitting around a  new age bookstore with purple notepads on their laps scribbling experiences that I’d rather not know about.  So, no, I did not journal.  I just spewed thoughts on the page at all times of day or night.  My notebooks did not contain full sentences, fleshed out ideas, nor a sense of composition. Most of my handwriting was illegible.  I was just trying to survive and my instinct was to put words on the page.

I love being a blogger and an author and using the screen and page to share ideas, resources, personal experiences, and coping tricks and tips with other young adult cancer patients.  But the best advice I have for any cancer patient wanting to write is to have a separate writing space where you don’t have to think logically, where no audience is present, and you can let the shit hit the fan in whatever way it wants to.  In a culture where the need to share via twitter and facebook is often a compulsion, it is quite peaceful writing for nobody but yourself.

A few days ago I had a fever. Sometimes simple aches and pains catapult me into an irrational headspace where I’m reminded of treatment, begin to sweat bullets, tremble, and my heart races. (I know I’m not alone in this as many of you weighed in on similar experiences in my post Scared of Every Little Ache and Pain?)

When I’m in this snowballing panic mode it helps to talk to someone about my fears. Often it’s my mom, my husband, or a friend. But the other night I wanted to talk to an insider. So I called a cancer hot line. I didn’t care if the person on the other end was a patient, professional, or a caring volunteer. It just felt cool calling someone whose whole goal was to be awake in the middle of the night waiting for a call like mine.

I described to the woman what was going on for me. Her reply: “Count your blessings. Did you say you have a husband? You should be so grateful you have a husband. Do you know how lucky you are? Just count your blessings and you’ll see things aren’t so bad.”

She was right, my panic wasn’t quite so bad anymore. Instead, it was replaced by a flood of anger, a desire to reach through the phone and smack her. I hung up and called two other hot lines. Both told me I needed to see a therapist. That was all they had to say. Seeing a therapist can be very helpful for some people at the right time. But it actually isn’t what I need now, nor was it what I needed in that moment. What I wanted was to be deeply listened to, to feel validated, to have confirmation that was I was experiencing was hard yet understandable. I didn’t want my experience to pathologized, erased, or negated with positive thinking BS.

I have researched loads of cancer community resources, but not call-in hot lines. From my experience there certainly is a dearth of good ones.

Who do you call when you are freaking out in the middle of the night? What do you want to hear from them? Have you ever called a cancer hot line? Do you have any good ones you can recommend?

Read Everything Changes to learn about the crafty places and unusual people that patients have turned to for stellar support.

When I lived in San Francisco, nobody batted an eyelash at dropping into casual conversation mention of a trip to their therapist.  “Oh, I had a really great breakthrough at my therapy session yesterday” was on conversational par with telling someone “I tried a fantastic new recipe for kale smoothies.”

But San Francisco is not the rest of the country.  (In fact when I moved to Chicago, I realized that San Francisco is sort of its own country.)  Out here in the rest of the world, therapy is often seen as a luxury item or something that crazy people do.  There can be a lot of resistance, embarrassment, and silence about seeing a therapist.  So where is the middle ground for chronically ill patients who are struggling with the stress of their disease and need some help?

I am dedicating this post to a young adult cancer patient who I have become extremely close with over the past three years.  She has been through the wringer with cancer and endless chemotherapy.  She is in a funk and it’s totally understandable.  25% of all cancer patients suffer from depression, and the rate is even higher for young adults. But, my friend lives in the deep south where nobody talks about seeing a therapist. In our last conversation, I got the sense that the idea of going to therapy made her feel like a freak.  Her oncologist has suggested it many times; I thought it might sit better if she heard the experiences of other patients who are trying to manage their own emotional ups and downs with cancer and chronic illnesses.

Give her your therapy 101: Have you ever seen a therapist because of depression, stress, or anxiety related to your illness?  What did you talk about?  Was it useful or not?   How is it different than talking to a friend or your partner?  What other ways have you coped with depression?

To learn more about illness and emotional support, read about Tracy in Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.