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?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
March 11th, 2010 at 2:10 PM
Hi Kairol,
That sounds like an awfully painfull experience. When I volunteer I don’t answer the phones I do other stuff. You are right to feel angry at those at the other end of those so-called hot lines. I really empathize with the pain you were going through. I would hope that you don’t give up calling when you need to talk to someone. Please take care of yourself and you that I care a lot about you.
Anita
March 11th, 2010 at 6:55 PM
I called a cancer hotline once. The person I talked to was not helpful and not understanding. I got the feeling she didn’t want to be doing this. She insisted on sending me free books I didn’t want and have tried to read but gave up on - they were about the healing power of this crap and that crap…
BUT she also put me in touch with a volunteer support system. She put me in touch with a 16 year survivor of the same cancer I have. That woman called me within 2 hours. She talked to me for an hour. She had been there, done that, knew how I felt, wanted to listen, wanted to help, wanted to give advice if that’s what I needed. Wanted to say, yes, she’d had recurrences and she was still here, still fine… Wanted to tell me that yes, it seemed to take forever, but she did get her energy back, she did feel better one day….
So in the end, it was a great experience, and I can’t even tell you whom I called, unfortunately. But at the time, talking to that woman was exactly what I needed. I’ll try to figure out what hotline it was that put me in touch with another survivor. That was a great help.
March 11th, 2010 at 10:14 PM
What you were experiencing WAS hard and VERY understandable.
March 12th, 2010 at 3:17 PM
Thanks for your comments. Wish you all had been on the other end of the line!
Greyash’s experience sounds fantastic. If others are wanting to find that great one-on-one connection, you should really check out Imerman Angels - http://www.imermanangels.org/. They are the yentas of the cancer world and make good one-on-one matches with a pretty quick turn around time.
March 14th, 2010 at 3:32 PM
“Count your blessings”.How says something like that to a cancer patient at a hotline?
I don´t have cancer myself,but I bet when you are freaking the last thing you want to hear is something like that.
You want someone to listen,who understands what you are going through.
People on those hotlines really have to learn how to actually talk to the person calling and not just repeat the same general stuff they say everytime.
March 16th, 2010 at 6:16 PM
I’ve never called a cancer hotline, but did contemplate it when I was first diagnosed.
Many years ago, when I was a young pup and just a couple of years out of college, I worked as an Emergency Services Clinician at a large mental health center in New England. I answered the emergency services hotline and was responsible for sorting out whatever might be on the other end of the line. I received a significant amount of training, supervision and debriefing sessions (we’d all get together at the end of the day and talk about who called, how it was handled, etc.). I was supervised by a psychiatric nurse manager and had access to two senior clinicians at all times.
It sounds like the people who are taking the calls at these hotlines are not properly trained, poorly supervised, and perhaps they don’t have the temperament that is necessary to help a stranger via the telephone. Listening, and providing validation and comfort are specialized skills. I don’t ever remember saying “count your blessings” to a distraught caller.
I’m sorry that you had a negative experience Kairol - I think your right about the scarcity of good hotlines. But having worked at one that helped a lot of people, I know there must be a few out there.
March 20th, 2010 at 6:35 AM
I would have had exactly the same reaction. When I’m freaking out I want to be told that it’s okay that I’m freaking out and have my feelings validated, not to be told to go see a therapist or how lucky I am. I called the ACS once for information. They really couldn’t tell me anything I didn’t already know but the oncology nurse on the phone when I started crying was really nice.
March 25th, 2010 at 6:24 PM
I passed the one year “anniversary” of being diagnosed with renal cell carcinoma. As a mid-20s non-white female, my chances of contracting this type of cancer were less than 5 out of 100,000. The average age of diagnosis is 65; men are about 2x as likely to contract kidney cancer as women. I’ve never touched a cigarette and smoking is the most common risk factor. I figured I would be the star in some medical journal article because my case was so rare. So I never thought to go to a support group because 1) I did not fit the profile of a typical RCC patient and 2) I really didn’t want to admit that at 24, I had stage II kidney cancer. Thanks for this blog - I was linked to it after reading some other comments re: the healthcare bill and I wish I had found this earlier.