Finding Support as a Lung Cancer Patient: Reaching Out

Finding Support as a Lung Cancer Patient: Reaching Out

There may come a time when you realize you need more support than family and friends can give you. Once you decide you want to reach out for more support, I suggest first looking at your preferred communication style. I am a pretty lousy email correspondent, for example. What I really like is talking to people on the phone if I can’t be with them in person. Increasingly I am phoning fellow lung cancer patients to talk with them. It’s a wonderful thing that long distance telephone calls are no longer expensive!

I also go to church fairly regularly. A church service feels like a safe place where I am surrounded by people who care, and where I can weep during an emotionally moving hymn without disgrace. Even when the people I talk with at social hour are not bosom buddies, they are kind and supportive. Pastoral counseling is part of a minister’s job, as is dealing with the harder questions of life, and he or she might be someone who can offer short-term intensive support.

A special place of support for me is also the mindfulness meditation group, or sangha, that I join weekly. We meditate together, and we discuss what’s on our minds. Every aspect of living with serious illness is fair game to this group, which is concerned with finding peace in the moment and with the impermanence of everything in our world. I went to the sangha on the day I was diagnosed, and I sat there with tears flowing down my cheeks and took my first steps towards living with my new reality.

Some people go to cancer support groups and find them to be the best support network they have. I have not tried that because the only group that meets at my cancer center is billed as a women’s support group that is intended for breast cancer patients. Everyone dealing with cancer has much in common, but we tend to group ourselves into tribes based around our cancer type. I’ve heard tales of stigma against lung cancer happening in such groups, and no one needs that in a situation where you go to open yourself up to others. If you are thinking about joining a support group, find out if it is facilitated by a professional, and ask the facilitator about her or his approach to stigma. Are statements about a patient “deserving” his or her cancer tolerated, or are they gently corrected? Another question to ask is if the group is a mixture of patients being treated with curative intent and metastatic patients, as concerns and needs may differ.

If you can afford it, there are conferences held for lung cancer patients and caregivers by lung cancer advocacy organizations; Free to Breathe held a Lung Cancer Leadership Conference last year that had a rave review from a friend who went. There are others as well and some offer travel grants. Until you go, you have no idea what it’s like to be in the same room as dozens and dozens of people who are also surviving with lung cancer. I went to two conferences last year, and they were peak experiences for me.

I also had several sessions of counseling after my diagnosis. Professional counseling can be difficult to access due to insurance restrictions and shortages of trained counselors, but I recommend it highly if it is available to you. You can say anything to a good counselor, and he or she will listen without judgement. This is where I talked through my darkest and most socially unacceptable thoughts, and started to come to peace with my diagnosis.

Where have you found your greatest support since lung cancer came into your life?

Photo credit: Unmodified image by Colin Gray, taken for the Govanhill photoshoot at the Arches, Glasgow, licensed under terms of Creative Commons Attribution 2.0

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10 Replies

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  • Yes. That's all I can say, Anita. Beautifully said.

  • Thanks, Peggy. :-)

  • Your usual great job, Anita! I've attended support groups here in my area at a Cancer Support Community and at a Gilda's Club when my mom was diagnosed. Fortunately, the group facilitators in both places did not allow any blaming or stigma to be attached.

    The oncology social workers at my hospital are wonderful to talk to and often know where you can find inexpensive or free access to the psychosocial support.

  • Thanks, Denzie. I meant to mention social workers at the cancer center - thank you for adding them to the list!

  • Hi Denzie, I can tell you through experience that seeking inexpensive or free access to psychological support is difficult. My suggestion is to inquire of your cancer center about seeing a therapist and/or a social worker who may be able to refer you. My cancer center offers that and also a nutritionist to help improve eating habits. My psychiatrist is covered under my Medicare and I am so grateful for that. I am on psych meds for depression and anxiety. I probably wouldn't be feeling too great if I didn't have my meds and doctor who I see every few months. I am seeing a therapist at the cancer center, and social worker, and nutritionist. The nutritionist is wonderful. I am 65, overweight, lethargic, do not exercise, nor do I get out much. She has explained how important eating healthy is. Lots of protein - approximately 62 grams for women each day. Fresh veggies are a must also along with fresh fruit. Don't forget exercise if you can. Just walking is good at your own pace.

    I wish you the best. Take care and God bless you. Kathie

  • Meant to add: I had the honor of attending the 2016 FtB Lung Cancer Leadership Conference. It was an amazing experience and I learned a great deal about becoming an effective advocate as well as about the lung cancer diseases.

  • Hello Scifiknitter. I just finished reading your post. You bring up several good points. Reaching out to others has always been difficult for me - I'm so very shy. I looked for places that support lung cancer patients and found this group first. Then realized that my wonderful Cancer Center has support groups and therapy along with a nutritionist. Also, I can get massages for free. I also see a psychiatrist, take depression and anxiety medication, and stay close to family. My two sons have been instrumental in my treatment plan and healing. Getting help is not always easy or available. Sometimes we have to really search for help and information. We are blessed to have this blog. It is helping me immensly. I wish you the best. God bless.

  • Kate, I'm so glad you have taken advantage of all of the resources you can, and that your sons are there for you every step of the way.

    Anita

  • I am newly diagnosed, I have a lot of trust issues & would rather not talk about myself (I can give awesome answers & advice to others), but not use it for myself....I have accepted I have lung cancer with it already possibly spreading (all the doctors can do is make me comfortable--due to mega allergies & other things that I can't do chemo, radiation or medications or anything else), so for me to talk to others if I help them it makes me feel better & not worrying about how I am that day.....I do agree with you, only what could possibly be out there for me with knowing everything has gone to hell fast with no longer having control over it....taking medication to stop the panic attacks & the places at our hospital has no one to talk with that is just being kept comfortable & not even knowing is the a different place to talk with anyone......so for me it's just make someone else happy....

  • Hi Terri, My name is Kathie. I was diagnosed in 2014 with small cell lung cancer. It has returned two times and I am now on my third round of treatment. Had chemotherapy and radiation but am now on my first try with immunotherapy called Keytruda. I feel so blessed because the only side effect I have had is a headache upon waking. With chemo I was very sick with nausea and lethargy. I also had a double mastectomy the end of January 2013. There is no connection between my breast cancer and the small cell lung cancer. I am telling you this to give you a little of my history with cancer. I am so sorry to hear about your diagnosis. How awful that you can't take any of the standard treatments. Has your doctor talked to you about immunotherapy at all? Is there a cancer center where you live or close by? My cancer center here in Santa Barbara, CA is wonderful. I have access to not only treatment, but counseling, access to a nutritionist, and of course my cancer nurses who are wonderful. I am also eligible for a free membership to the YMCA if I want it. Also, my cancer center offers free massages. Are you in any pain? Can you take pain medication? Sorry to be so nosey but am very concerned for you. I would love to be of any help to you. Please ask me anything. I will keep you in my prayers. God bless you.

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