Support

[Libby]

Hi (this is my first post),

Throughout my 3 year journey with lung cancer I have not tried to receive any help from support groups, although I would love to get support now from other people who have experienced lung cancer. I have my husband and daughter who is now 15 at home, but I feel like I am an outcast, I don't feel like I fit in anywhere, home, work, etc.

My life has been turned upside down and I struggle daily with coping with the worries of re-occurrence. I have never posted on this site but spent a lot of time here during my treatments. I received more information/help from this forum then I did from the doctors. I am grateful for the 3 years I have gained since my diagnosis. The prognosis was not good and I consider myself very lucky!

Does anyone know of any lung cancer support groups that meet? Or is it more generally just on the forum. I live in Green Bay, WI and there are support groups but mainly for breast cancer. Lung Cancer patients are treated differently sometimes because people feel it is your problem if you smoked. I constantly feel like I am hiding from the truth.

Cancer runs in my family. I lost my grandmother to lung cancer and my Dad to esophagus cancer few years before my diagnosis. I am going to Chicago Sun-Wed and staying only a few blocks from the main office. I plan on stopping in and saying hi.

I feel like I need a support group and I feel strongly about bringing support to other lung cancer patients in my area. It is very frightening and lonely without support. Extremely hard to cope!

Well enough of me babbling any info on support groups or how I can connect with other lung cancer survivors would be appreciated. I just don’t know where to start and I am still frightened about the whole experience.

[Joppette]

Hi there,

I don't know the state of Wisconsin well, but there is a Gilda's club in Green Bay and other areas near to you. I highly recommend Gilda's club if it is close to you for cancer support.

There is also a support group in Chicago. I wish you the best.

Know this! Lung cancer is not your fault. There are a lot of people getting this that never smoked. We need to find a cure. Period. It does not matter how we got it, it does matter to get to a cure.

Judy in MI

[eric byrne]

Hi Libby,

I was dxd with nsclc in Oct 2008,and have we similarities in our stories,yes I do have some hang ups about reoccurance too,in fact I would be very surprised if there was anyone here who dosnt,so dont think you are alone.For example at this moment in time my fears of reoccurrance are gone,just sitting here typing this for you is actually therapy to me,activities I do are actually distractions,that interupt my brain to stop gloomy thoughts rearing their ugly heads.

By practice this distaction method I use becomes so natural and mind consuming that reoccurance dosnt get a chance to enter my mind for 99.9% of my day.To tell you another little trick,I post here every day on various forums,I am thinking what to write or what I should say in respose to some topic someone else has mentioned in the forums.

I am sure there will be a lung cancer support group near you.My buddy Robert Lowe diagnosed in 1993,with sclc,then in 2007 developed nsclc,went along to his local hospital met up with a lung nurse called Penny Downer,and talked her into starting their own lung cancer support group,well I got to hear about it,and joined them about 4 months ago and it has been great for me,each month we invite a guess speaker along,who are very supportive of our little group,so far we have a a phsyciatrist? along talking about dealing with feeling low up to clinical depression,a nutritionist talking about healthy eating.two lung cancer research nurses along from the Beatson in Glasgow

(a world famous cancer hospital)they explained everything about their work,clincal trials,latest developements in lung cancer research,last month we had a conducted tour of the newly built Marie Curie Hospice,which also included a practical participation class doing Tai Chi,which was very relaxing.

Libby I have prattled on,I hope I havent bored you do death,and I wish you well and that the burden you are carrying will get lighter till eventually it disappears,none of us know when our time is up,why waste the good times available to you now,worrying about something that may never happen?.Jesus said "Who for worry can add one day to his life?".Finally Robert Lowe was so ill at his Dx he was only given two months to live,in fact he was hospitilised for his treatment,and his family were called in twice,as his doctors believed his death was imminent that was 17 years ago,you can read his full story and mine in Cancer Advocates in www Roy Castle Lung Cancer Foundation.org. Bye for now God Bless.

[ts]

Hi Libby,

That's been quite a burden to carry alone for 3 years. I hope you had well intentioned family and friends at the least.

Another place to check for support groups is at your hospital or medical facility. Here in Seattle, they are facilitated by a oncology social worker - if ever there was a better breed of person, I haven't met them. The group I attend is mixed cancer types - but "Living with Cancer" is the theme. I also have a few lung cancer only comrades, but we only meet once a month.

Gilda's Clubhouse has been a good source of recreation, lectures, and movement class for me. I tried a group there and it was not a good match. Sometimes, you have to try more than once to find the right place and time.

Seattle also has Cancer Lifeline; they run groups as well. None of these groups charge either - a consideration for me.

I think one thing many have found is that advocating on behalf of lung cancer education and awareness gives us power over the stigma. Indignation over shame. Try it, you might like it.

Best.

[Libby]

Thank all of you Soooooooo much for your help. Jopette I will research the Gilda’s Club in Green bay. There are a lot of support groups here, but not specifically for lung cancer. I guess I am so worried about the stigma that comes along with it; I keep talking myself out of going. They opened a new center here called Triumph Center and I did contribute to their fund raising event. Before they opened I actually help another lung cancer patient that was recently diagnosed over the phone several times. Now the center opened and I have not stopped up for any of the meeting or activities. I guess it is fear of rejection.

Eric I think you are right. Everyone must experience the same fears. It is what you do with it and not allowing your self time to dwell on it. My daughter, husband and mom are very supportive and I know I must be driving them crazy at this point. I need to find a way to move on. I have finally been upgraded to 1 year CT scans, I should be happy about that. Eric your story is very motivating. Why would anyone have to deal with two cancers? Life is so unfair! You have a great attitude and I admire you. I did work through my whole treatment plan even went back to work early after the lung surgery, but I need to fill in the after work gaps with something positive. I did better during treatment then now! I agree I need to keep my mind busy and on more positive activities other then dwelling on fear. I actually feel better right now typing this. I will checkout Roy Castle website. Thank you.

Ts thank you also. It is a huge burden to carry around for 3 years and I know now that I do need support and friends. It is just the fear of acceptance. I feel cancer is cancer no matter what type no one should judged, but they are. The main goal for everyone should be to find a cure for all cancers. “Living with Cancer” is exactly the type of group I would love to find. I will research the hospital again and call the new center here I think they have a group like that. I will stay on Lungevity forum because this place has helped me the most along my journey. I feel like everyone here is accepted for whom they are. I may even try to sponsor an event in this area and see how it goes. I would love to be able to contribute to this organization. (I bet there are a lot of lung cancer survivors in this area just need to find them).

Thank you all for your support. I leave for Chicago in the morning, can’t wait, that will keep my mind busy.

[Joppette]

Libby, I know what you are saying about feeling better during treatment than after! I got very depressed after treatment. I thought my life would just return to the old normal. When it didn't, I was like....WHAT????

But enough time has gone by now for me to just accept what my new normal is, and to embrace life for what it is, and not think about what it is not. Amen.

Life is short. We need to make the best of what we have, and be thankful we are alive and doing relatively well.

And we need to let go of the stigma. We didn't ask for or deserve lung cancer. No one deserves any kind of cancer. If we encounter someone who seems judgemental, we need to educate them. No one is immune from lung cancer. It does not discriminate.

Judy in MI

[Libby]

Judy (now I have your name right),

Yes, I need to work on accepting my new life. Although I lost left upper lobe I actually feel "better physically". I walk and exercise, something I never did when I smoked. It is the mental acceptance that i need to work on.

I have so much to be thankful for. I think speaking with other people who have been through the same journey and have experienced the same feelings will help me find a happier ground. I have a difficult time asking for help, that is a downfall for me and I need to let go and move forward.

After looking at myself I can not say how important it is to have a good support group. I hope other survivors don't make the same mistake I did and ignore joining some kind of support group whether it be via Internet or local meetings.

Thank your for your support.

[recce101]

Hi, Libby, welcome to LCSC. As Judy and others have said (we've discussed this previously), getting a complete response from therapy and then worrying about a recurrence can be harder than never having all traces of cancer removed in the first place. It's really strange how the mind works.

It's true that there are relatively few support groups devoted to lung cancer, and going to one of the general groups can be chancy in terms of the stigma issue. I'm aware of only one "lung cancer" support group on Oahu, and that's downtown at one of the major medical centers, too much of a drive for me to do routinely. I imagine that's the case most places. Hopefully the number will increase as the work of dedicated advocates begins to bear fruit.

Have a good trip to Chicago. Aloha,

Ned

[Snowflake]

Welcome to the inner circle, Libby. Glad to see you step out of the shadows.

My suggestion? Contact your local American Cancer Society and see a counselor. I had been seeing a counselor due to blended family issues when I was diagnosed, and the receptionist in the office was a breast cancer survivor. She not only suggested an oncologist, she suggested a particular counselor at ACS. I went to see the counselor and just talked for four hours about life and cancer and the horrible dark feelings I had. It helped so much, just to vocalize all of that emotional sewage that no loved one ever wants to share...

I know that there is an in-person support group in Baraboo, Wisconsin, as a friend of mine used to be a large part of it (RIP Dave Grant). I believe support groups that are specific to lung cancer are few and far between, found mostly in larger cities where the concentration of patients is bigger.

I strongly urge you to see a counselor, someone who is knowledgeable to the issues involved with cancer and realizing mortality. I do know exactly what you mean, having felt like I was on the outside looking in for the longest time. You just have to find the door to walk back in to your life, you're just out of step.

In my case, it was like my brain wanted the world to slow down until I processed all that I was going through, but that just never happened. Life moves on, quickly. Blink and you'll miss it...

I can tell you that for the first two years, I was very cautious about making any plans, since I just knew I wasn't going to be around to see those plans completed. As I've stated here before, I WASTED two precious years.

I still deal with the monsters under the bed at the most inopportune times. If my brain is given the time to dwell, it swings back to that well-worn path and the monsters start creeping out. I have a Louisville Slugger to deal with those monsters, usually a Xanax and a glass of water...

Keep trying, you'll get back in step with your life. The tune may be different, but you'll dance again.

[Libby]

Ned,

Thank you for the warm welcome. It is very true that the mind works in strange ways. I am finally realizing that I need help to move forward. Strange but true 3 years later and I am still afraid to make any long term plans. Scary!! I am a going to look around for a local support group that can over look the stigma and finger pointing and move on with life. I should say my new life. I love your Golden Retriever. I have a Black Lab and Cocker spaniel, they are my babies, such an unconditional love with them. Thanks again.

[Libby]

Snowflake,

Thank you for the welcome and the time you have taken to respond to me. We have a lot in common. Congratulations on your sons’ recent graduation. One goal I have is to see my daughter graduate from High School (3 more years). So with that being said I guess I am planning a little. I am very apprehensive about planning! I love your sons picture.

I appreciate all your suggestions and I have considered doing counseling also. I think finding someone who has been there will help. I do know a therapist that leased in the building where I worked and she was a little younger then me and had breast cancer couple of years before me. Maybe I need to be calling her. We became friends once she found out I was sick and she always talked to me in the building whenever she seen me, now she moved and is leasing at a different building, that would really do some good. I think I will look her up. I will also call ACS to get a couple of references of counselors who have actually experienced the feeling that I am going through. Otherwise they will probably think I am “NUTS”.

I agree there are some very dark emotional feelings that need to be dealt with. I am an emotional wreck, I just hide it well. I appreciate the recommendations. I too have that little pill and a glass of water when I need to rest and can’t. I would like to deal with life without them one day.

I like what you said about stepping back into my life again, it is very frightening but I know I can do it. I have wasted 2 years also dwelling and worrying. I need to live and leave it in god’s hands. Boy I wish I lived by everyone! I never realized it would be this difficult after treatment.

Thanks again.

[Bud Baker]

Welcome, Libby. I had stage II squamous cell and also had the upper lobe of my left lung removed. I had three rounds of chemo afterward. Last week, I had my scans, 2 1/2 years after surgery, am still cancer free, and have been changed to annual scans.

There's no doubt that a bout with lung cancer changes you for good. It's hard to avoid the paranoia and sense of dread that it will return. It also has a way of changing your perspective on things.

I think it does the soul good to talk about it all with others who are also there. I attend a local support group that our Katie Brown started. It seems hard to get a lung cancer specific group going, though. A lot of lung cancer patients tend to retreat to within themselves. I hope that's something we can help change.

[Libby]

Bud,

I am so glad to here that you are cancer free also. I think you are correct lung cancer patients tend to stay to themselves and I know first hand this is not good. I am hoping I can change that for this area I live in. You are so lucky to have meetings to go to that you are conformtable with. Leaving for Chicago this morning, so I should keep my worried mind busy. I am hoping to stop at the main office on LaSalle St.

PS: My perspective on things have certainly changed, for the good! My compassion for other people (complete strangers) is unbelievable.

Libby

[RandyW]

I have never walked in these shoes but just want Ya to know Sending you a big soft gentle hug and a prayer for some peace and comfort as I read along...((((((((((Libby)))))))))) and am always here to listen and support!!

[jaminkw]

Hi Libby, welcome. I'm late coming in because I've been traveling and out of internet service a great deal. Looks like lots of folk have come to offer support and advice. It also sounds like you've come a long way baby in changing fear into action. Keep up the good fight. And enjoy Chicago. I hear it is an awesome city.

Judy in KW

[Libby]

Thank your Randy and thank you Judy. Atleast in Chicago I can get the Internet. I am feel very welcomed and actually feel honored that so many strangers would lend a hand. Thank you so much.

[Libby]

I did it I came out of my shell yesterday and stopped up at Lungevity office in Chicago. Big step for me. I am actually looking forward to getttng home and looking for a local support group (that is not judging of course!) along with staying on the forum. You all have helped me more then you can imagine already.

Snowflake. I am so sorry that you had to go through divorce, job loss and insurance loss. Life is very unfair. I am not sure how I could have handled cancer and then all that. You are a very strong person.

Boy I do relate to the monsters under the bed. Somedays they are very hard to beat up! Maybe I need a bigger stick

[jaminkw]

Good for you Libby, on that visit to Lungevity. Hope you enjoyed your visit to Chicago. So glad this site has helped you over a bump in the road.

Judy in KW

[eric byrne]

Hi Libby,

I threw that keeping the monster at bay stick away,I found having a laugh every day is more potent,you just have to come online here to read rediculous stories like Becky and her keg bus and the monsters just dissolve.Ann's jokes are also antidotes to monsters also.

[Annette]

This has to be one of the best posts I've read in a long time. As always the group jumps in to support someone - and that bouys that person and everyone who reads it. It is awesome to read some of the feelings that we all have voiced - and it is in many ways a relief to know that we are progressing with the support of everyone on this site. I was lucky and stumbled onto this site right after I was diagnosed in May 2009. I read and cried and felt for everyone here, then got up the nerve and posted. Now everyone is like family and you cheer for the good news and cry for the bad. I'm almost one year from my second surgery and when my toe hurts I still feel like "it's" back. I think I'm getting through that a little. I admire your strength - and hope you do stick with us on this forum. I know I am starting to feel better - starting to think about making a plan or two - well not for too long in the future.....

Where did that strength go now darn it......

Annette

[Libby]

Thank you Katie and thank you Annette.

I think this support group has more power then I thought! It is so true about slightest cough or knee ache and I am planning the funeral (how crazy our minds are)

I hope in the future that Doctors will take a more active role in helping the patient understand after treatment that they will need support and life will not be the same. I really must have been a fool to assume my life would not be changed forever. Silly me! You guys and gals are great, the support has already helped in so many ways. I am sticking around:D

Libby

[Joppette]

Libby you ARE a survivor. Loved reading this post.

Judy in MI