Finding Support as a Lung Cancer Patient: Our Family and Friends

[scifiknitter]

Everyone needs a little support now and then, but when you’ve been diagnosed with lung cancer, a deadly illness that comes with a stigma, emotional support is essential. Even after living with lung cancer for a while, most of us are going to need support from time to time - from friends, family, and our medical team, at the minimum.

Our medical teams’ primary support role is with treatment and information. I know that I am always acutely aware when I meet with my oncologists that they have many other patients to see that day, and that their job is to cover all of the medical information I need to know, and and to answer my medical questions. These appointments are not the best time and place for me to address the emotional side of this experience.

For emotional support, I reach out first to family and friends. There are some potential issues, however, that I have become more aware of over time. When I look at my conversations and social media communication, I have to admit that at times I am obsessed with lung cancer. It’s a lot to ask any friend to listen to my most recent gem of insight or the latest research finding over and over. Sooner or later our conversations with friends have to allow space for other topics. The same goes for family. Conversations with those who love us also need to be mindful that your medical situation is hard for them to deal with emotionally as well. Everyone is aware of the potential for pain and loss, and denial is an easy way out of dealing with negative emotions. Your beloved family members may have a hard time with your most difficult thoughts and feelings.

It’s safe to say that we all joined the Free to Breathe community for support. There is a bond between fellow lung cancer patients that is strong and immediate. We know what each other is going through, and we don’t get tired of talking with each other about symptom management, treatment choices, and medical advances. I recommend seeking out an online support community to every cancer patient I meet, especially to the newly diagnosed. As much as we care for each other, however, sometimes we need to talk to another person more directly. The computer screen is both a window allowing us to connect with others and a wall that keeps us from deep person-to-person contact.

Do you have anyone you can talk to about the really deep down dark stuff - your fears, your anger, the thoughts that seem unacceptable in polite social conversation?

Photo credit: Creative Commons CC0 Public Domain image from Pixabay

[Denzie Moderator Volunteer]

Hi, Anita. I attend a patient support group at my local Cancer Support Community. It is a group of mixed cancer types but we all have more in common than our differences. Most of the same chemos are used, radiation fatigue, side effects, etc. Its a wonderful, judgement free zone. We cry a lot but we laugh a lot.

We help each other find answers. Some start before treatment begins some after. Recovery is about much more than the disease. We help each other find strategies to deal with physical and psycho/social issues surrounding cancer and day to day life. Its one of highlights of my week. I recommend meetings to every cancer patient and categiver I meet and often encourage the same on line. Many hospitals also have group meetings.

The Cancer Support Community may have been known to some here as the Wellness Community. A few years ago they joined forces with Gilda's Club so they didnt have to compete for resources. For a listing of patient groups and caregiver groups visit this page: cancersupportcommunity.org/...

[scifiknitter Blogger in reply to Denzie]

Denzie, I am thrilled to hear that you have found such a great support group. I have a part 2 to this post coming out on Friday that includes support groups.

Anita

[Denzie Moderator Volunteer in reply to scifiknitter]

I look forward to reading it.

[RwHayes Community Superhero in reply to scifiknitter]

Me too!

[RwHayes Community Superhero in reply to Denzie]

Also well stated, thanks for the info I have been seriously considering joining a group like that for a while now.

Best wishes,

RW

[RwHayes Community Superhero]

Very well said Anita , I have tried to explain to others why it's hard to talk to family about this on a daily basis, but you said it perfectly.

Best wishes ,

RW

[scifiknitter Blogger in reply to RwHayes]

Thank you, RW.

[Ricefam]

Very well said! Thank you.

[Ricefam]

I too, am a nurse and stage IV non small cell adeno CA lung cancer survivor diagnosed in December 2014 and without evidence of disease in my body 1 year and brain almost 2 years. I swear by this book, as well and have adopted his suggestions, as well. I believe in this book so much that I give this book out to people newly diagnosed with cancer as a source of hope. Wishing all a happy healthy 2017.

Thank you for your post.

[Hidden]

Anita you are so right. Every thing you said is so true it would be so nice to have someone face to face to talk about are deepest fears who will really listen and not get tired of you talking about it all the time. I wish I knew of someone or some way to make it happen. yes I am cancer free but deep down inside i'm afraid. I know I have had cancer more than twice I don't talk about it much because it hurts. That is a very good blog. thank you Anita. Jo

[paulalv in reply to Hidden]

If you can't find a survivor to meet with in person, maybe you can connect with someone thru email & that would be helpful. Sometimes writing what you feel & having someone on the other end relate is a relief.

[scifiknitter Blogger]

Thanks so much, Jo. I have a part 2 I'll post tomorrow with some ideas for where you can reach out.

[lizzy-9]

No I sure don't have any body

[Hidden]

@paulalv hi i'm jo I am cancer free it has been a little over three years. My oncologist said it is gone from my lympnodes. He said I was going to make it to my fifth year and longer. So I guess i'm a survior. If you need to talk i'm here. Jo