Newcomer (non-patient) seeking advice

[Reeveseye]

To the members of this forum:

Please allow me to introduce myself. My name is John, and I’ve come here seeking advice and links that will allow me to help a friend and co-worker of mine who has been diagnosed with lung cancer. Please bear with me as I fill you in on the details.

I’ve worked with my friend Joe (I’m using pseudonyms for his and his wife’s names out of respect for their privacy) for about ten years. About two years ago, I was promoted and am now his supervisor. He and I have remained friends during that time, and I also know his wife, whom I’ve known for about fourteen years. He’s about thirty years old, with a three year old daughter, and has always been in the best of health (non-smoker, does not use tobacco).

He suddenly began feeling ill last week, and had difficulty breathing. Within a few days, he went downhill rapidly. His lungs had to be drained of fluid twice, a sizeable mass was detected upon them, and a lymph node was removed from his neck that tested positive for Stage IV lung cancer. His wife Jane told me that the disease has spread so rapidly that the doctors say he has anywhere from six months to two years to live – probably somewhere in the middle of that. They still have no idea what caused him to get cancer at such a young age, but agree that barring some miracle, it’s terminal.

Needless to say, they are devastated. Jane is attempting to remain strong in front of Joe, but she’s of course heartbroken and terrified at the impending prospect of life without him. Joe, who has always been a bit of a pessimist, is teetering on the brink of a depression that Jane and his doctors are desperate to keep him from having, since that would only help the disease spread faster. His mother is the only one of their parents who is able to help them, and she’s obviously in pretty bad shape herself, considering the sudden devastating news about her only son.

Jane has asked me to be her liaison at work, (all three of us work for the same agency). She’s asked me to inform all the appropriate people of their situation, and get the paperwork in motion to deal with his extended (and probably permanent) absence from work. I’ve done this, and will of course do all I can to smooth the nightmarish paper trail that’s always generated by this sort of thing. But I have several other concerns, and that’s why I come to this board’s members seeking advice.

Joe and Jane are very private people, and don’t want a lot of attention about this, or calls from people at work. As both his friend and supervisor, I’ll be having a great deal of contact with both of them in the coming months, and frankly, I’m at a bit of a loss as to how I can be the most help to them. For example, I’m not sure how to behave around him. My first instinct is to behave normally, and not give him the impression that I’ve “written him off” or anything like that. But we normally joke a lot, and I’m worried that it might now come off as me not taking his situation seriously, which is absolutely NOT the case. I want to say something to comfort Jane, but what? I held her and let her cry on my shoulder, but I’m at a loss for anything to say other than “I’m here for you,” or “We’ll get through this,” – in short, things that seem like empty platitudes. I can hardly tell her it’s going to be OK, because to put it bluntly, it won’t be.

These people are my friends, and I want to do right by them in their time of need. But I feel I lack the knowledge to do it properly. How should I act? How can I best support them? I would greatly appreciate any advice, links, or other information the more knowledgeable members of this board might be able to provide.

[kimblanchard]

The first thing is that all estimates of survival are just that - estimates. No doctor knows anything like six months to two years. If Joe is being treated by doctors with no hope, then he should find new doctors.

His youth can be a real advantage. My wife had a similar profile as Joe; she was diagnosed two weeks after her 30th birthday with stage III non small cell. The end of the story isn't good, she died after 15 months of battling, but she was productive the entire time, teaching classes on Friday before she died on Sunday. Her youth enabled her to tolerate surgery, radiation and chemo much better than the doctors expected, so that she was able to be home alone with our three year old in the middle of weeks and maintain a full time teaching load as a professor.

She was immensely grateful to her boss for not writing her off. She continued to have tenure meetings; she would have been up for tenure in 3-4 years, and her boss and colleagues treated her like one of the team throughout.

As for treatments, I would look into chemosensitivity. A lot of oncologists don't seem to know about it, but in layman's terms, they take a biopsy from the tumor and subject it to various combos of chemo drugs to see which work best. It ised to be that this process was lengthy and not terribly accurate, but it seems to be doing better now.

Another thing I would look into is one of the clinical trials with the GVAX vaccine, I think. You can probably search this site for discussion of this trials and links to more information.

None of us know how long we are here. The best thing any of us can do is stretch a bunch of good days together. I could always stay focused on a day or a week at a time, but much more than that was too scary.

Please keep in touch and finding out as much as you can.

Curtis

[TBone]

Hi,

The most important thing right now for your friend and his wife is to get a team of doctors that they are comfortable with and be aggresive about treatment options,etc.There is no time to waste in this battle.Tell her to go to doctor visits with him.Write everything down.Ask lots of questions.Seek second opinions.Also,you may want to copy your post into the caregiver forum as there are some great ones on here and all are willing to do anything they can to help.As for how to approach them I can only say that for me,a cancer victim,the only thing I want to hear is the point blank truth.It helps to talk openly about it.It is important that someone take charge and ask questions and seek treatment and doctors right now though.Praying for us all.TBone

[ginnyde]

John,

I am so sorry about your friend. Just a couple of ideas.

Let them know about this site. As the wife of a husband with stage IV, I have found enormous amount of support, caring and knowledge, knowledge about the different treatments, nutrition etc etc etc. I use this and discuss it with our drs.

Offer to run interference for them. Investigating treatments, insurance probs etc.

Stage IV lung cancer usually qualifies you for SS disability. It takes 5/6 months to get a check, but it can't hurt to get the ball rolling, if the family needs this.

Ginny

[brm1949]

Be the friend you always have been, you joked around a lot before, then by all means joke around still. If self pity is evident, don't help it along. When first diagnosed, its devastating. But your friend and his wife will find they are much stronger than they could ever imagine. I truly understand the helplesness you feel but all you can really do is be that friend you always were. Listening to them and not telling them how they should feel is most important. They will need to vent and have someone to listen is extremely important. of course this will not be easy on you either. This is a tough disease and it wears both physically and emotionally. It is as many here have said, a rollercoaster from hell, but there is hope, many of us have survived longer than we expected. Just be a friend, you couldn't give anything greater than that.

[cathy]

Hi John,

I would tell them about this website, let them know they can be lurkers before and if they decide to join..It's a wonderful place full of much knowledge and experience.. There is always someone who has been through the same or similar situation..

They need to have hope, and there is hope for LC..Dont listen to any of the statistics because no one is a statistic...There are members on this board who are surviving LC every day.. I think they will appreciate the research you are doing for them, because that can be so overwhelming searching and searching for stories of hope, just send them here, you have come to right place... Wait and see all the inspiring people you will meet..

[Donna G]

Your friends need you now. One thing they need is a good listener. Be willing to listen. They may also need physical help. Hopefully he will get chemo which makes you tired. Perhaps the lawn mowed, a ride to the doctor, With a small child a few hours of child care. If people at the office are willing you could organize this help. Please don't desert them. They really need caring friends. You must be one to hunt for this site. Donna G

[MO_Sugar]

The main thing your friend needs to remember is he has 2 choices. He can roll over and let this beast get him OR he can fight it and have a LIFE while dealing with cancer.

I am a firm believer that faith and attitude cover at LEAST 75% of the people who are survivors. I know I have cancer, I know it will eventually kill me BUT I am going to make it WORK as hard as it can to do so! I and my medical team have been very aggresive in my treatment and will continue to be until I take my last breath. I am a hard headed Norwegian and I do NOT give up easy.

Statistics are a bunch of cra* for the most part. In cancer they are usually 10 years old or older and things change daily! I was told (by statistics) that I had a 5 - 8 month window after diagnosis. That was 11 months ago and I am still going strong!

Please be sure your friend has a medical team that is willing to listen and to be aggresive.

Prayers and good wishes being sent for all of you!

God Bless,

MO

[jamie]

Hi... I can understand your feelings about not being sure how to act. My Dad has stage 3b LC, and he is a big fun, jokster kind of guy. I wasnt sure how to even approach him after his dx.... but he cleared that up right away by saying to me... "Geese, I never seen the cancer warnings on cigarettes, i just thought they'd turn my fingernails yellow!". That was it, I knew he was his old self. I guess you have to take the cue's from him. See how he's feeling about cancer that day. As far as his wife, reassure her that no doctors can tell how long a person will live, or the queality of life. He may live longer than expected, with minimal complications. Take each day as it comes. Good luck to both your friend and his wife.. Jamie

[betplace]

Just hang out with them and be their friend, If they want to talk they will, don't ignore it, but don't focus on it either. I have a friend and she calls every morning and we talk for 10 to 30 min. Sometimes its about me, sometimes about her. She asks me how I'm feeling and gives sympathy if I need it, but mostly she is just there! It helps immeasurably. All the advice above is good. Take your cues from your friends and follow your heart and you won't go wrong!

Welcome to our forum, your friends are lucky to have you!

Blessings

Betty

[natalie]

You are such a nice and caring manager and friend! That probably helps them more than you know. The most helpful thing to me was an understanding manager. He was just great. Whenever I had an appt for my mom, he never questioned it. He also was such a good listener. Because he was so understanding I was able to be such an important part in my mom's cancer battle which means the world to me right now. I went to every appointment and took half days to be with my mom. My company is also involved with the Relay for Life (which they started on my behalf last year) and have given donations towards cancer. As a result to all of this, my company has my upmost loyalty. I am so honored to work for such a compassionate group of people. They treat me like family even though our company has over 175 employees. That means more to me than any salary, or status quo. I had someone offer me a job with a higher salary and I told them I was not interested...how the heck could I leave such a great company?!!

What also really helped me a lot were little things. I had a neighbor call me and say, I'm going to swing by and pick up your house key? I know you have many family members there and you've been under some stress so I'm going to have your house cleaned for you on Monday. She didn't give me the opportunity to say, "you don't have to do that, etc." It helped so much! It felt good to come to such a clean house. I had both my mom and Dad, multiple family members staying with me and with all the stress involved it helped so much to not have to worry about cleaning. You could also bring over dinner, grocery shop for them one day...anything like that really helps. We all payed $5.00 to wear jeans this Friday and all the money goes to cancer research. Anyways, I just wanted to give you some ideas (my parents were very private too). I wish you the best and just want to let you know I think you are great for caring so much about your friend and coworker!

[Snowflake]

My suggestion would be to be the friend you always were... If you feel a need to help, help in ways that will whip your friend physically (can I hear an "AMEN" on help with mowing from all you SURVIVORS out there??). You could do it as a family bar-b-que, if your families (?) are friends, as well - or there's an opportunity to further the friendship...

I understand what you are saying about your friend being a private person, but being a private person does not mean that he won't invite help from his select "insiders". I doubt anyone would ASK for help around the house (affirmation that health is compromised) but if you were to do it in a fun way, maybe it wouldn't be construed as 'pity'... OR, if you have no desire to actually push the mower, hire it to be done for him (and your excuse could be preparation for an oh-so-juicy flame-broiled steak patio party...ooooo the evils of red meat - but protein is good for him).

Yes, some things have changed, but the cornerstones need to remain the same. One thing that prevails with us survivors is the theme of "The NEW Normal". It now takes me three times as long to make the bed and I have to take a break after adding the sheets - that is the new "norm", plain and simple...and pillow fights? Still win them, but I also still cheat

Stay with us, the companions ALMOST make the ride "worth it".

Becky

aka Snowflake

[dadstimeon]

Hi John,

Sorry to hear about you friend. You’re at the right place. Stay positive and focused. Take it one-step and one day at a time. Knowledge is the key. Learn as much as you can. Get a second opinion if not comfortable with what the doctor says. Question everything. Be very pro-active. Joking and laughing goes a long way also, nothing wrong with that. Below are some links to research. Hope this helps. My thoughts and prayers are with you guys. Peace, take care and God Bless.

Rich

[The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / The Power Of Laughter / United We Stand, Divided We Fall / That’s The Key]

http://www.ncbi.nlm.nih.gov/entrez/quer ... h&DB=books (NCBI / BookShelf)

http://www.lungcancerfyi.com/lung_cancer_faq.html ((Lung Cancer - Frequently Asked Questions))

http://www.lungcancerfyi.com/lung_cancer_glossary.html (Lung Cancer Glossary)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Receive the PLWC Bulletin)

http://www.usnews.com/usnews/health/hos ... p_home.htm (Directory Of American Hospitals)

http://www.lungcanceronline.org/tests/index.html (Lung Cancer Online / Test And Procedures)

http://www.vh.org/adult/patient/cancerc ... index.html (Understanding Blood Tests / A Guide for Patients with Cancer)

http://www.cancer.gov/cancerinfo/pdq/tr ... ng/patient (SCLC)

http://www.meds.com/pdq/smallcell_pat.html (Medicine OnLine / SCLG)

http://health.allrefer.com/health/prima ... -info.html (Diseases And Conditions / SCLC)

http://www.hospicefoundation.org (Hospice Foundation Of America)

http://www.hospiceweb.com (Hospice Web)

http://www.hospice-america.org/consumer.html (Hospice Association Of America)

http://www.hospicenet.org (Hospice Net)

http://www.plwc.org/plwc/MainConstructo ... 151,00.asp (PLWC Feature: Talking to Someone With Cancer)

http://www.zanesvilletimesrecorder.com/ ... 87526.html (3-year-old keeps her smile in battle with rare cancer)

http://www.rfalung.com (Radio Frequency Ablation Of Lung Cancer)

http://www.lungcancercoalition.org (Global Lung Cancer Coalition)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (PLWC Feature: Financial Support Resources)

http://www.usnews.com/usnews/nycu/healt ... hqcanc.htm (Best Hospitals)

https://www.alcase.org/advocacy/sign_the_petition.html (Advocacy /Sign the Petition)

http://www.cancersymptoms.org (Oncology Nursing Society)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Questions to Ask the Doctor)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free)

http://www.drugs.com (Drug Information Online)

http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education)

http://www.nlm.nih.gov (Unites States / National Library Of Medicine)

http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia)

http://www.google.com (Great Search Engine)

http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

http://www.cancer.org (American Cancer Society)

http://www.cancer.gov (Cancer Information Service / NCI)

http://www.cancerresearchcenter.org (Cancer Research Center)

http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR)

http://www.cancerhopenetwork.org (Cancer Hope Network)

http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders)

http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

http://www.lungusa.org (American Lung Association)

http://www.ama-assn.org (American Medical Association)

http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer)

http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder)

http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net)

http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory)

http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

http://www.patientadvocate.org (Patient Advocate Foundation)

http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects)

http://www.cancerlinks.org/lung.html (Lung Cancer Links)

http://www.cancer-free.com (Cancer Free Connections)

http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite)

http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page)

http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary)

http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages)

http://icare.org (ICARE / The International Cancer Alliance)

http://www.vh.org/index.html (Virtual Hospital)

http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues)

http://cancernews.healthology.com/focus ... cancernews (Cancer News)

[Don Wood]

Your friend is very fortunate to have you in his corner. Definitely be normal and natural (as you can) -- life goes on. Definitely keep the humor -- all of us here can attest to that. We need a laugh. Ask them what they need from you. Right now, probably any info you can glean from here, and your personal support of them are in order. Hang in there with them. Let us know what we can do for you. Don

[DeanCarl]

John,

Just a "ditto" to what others have said already. What I, as a person with cancer, want is for my friends to continue to be my friends. I, unfortunately, have had the experience of having one person I thought was a good friend completely disapear on me since my dx. Not a good feeling.

Understand that your relationship with "Jane" and "Joe" WILL change as he goes through all this. You (and they) can't deny the fact he has this illness. Don Wood calls it the "new normal" we all experience. But the basis of caring that seems to have grown up between you and your friends over time will not change unless you let it.

Good luck with all this. It's a REALLY bumpy road but it doesn't have to be travelled alone.

Dean

[Fay A.]

John,

Thank Goodness Joe and Jane have you on their side. A good friend is such an incredible blessing in a situation like this.

Now tell them both about this site. And tell them we can help them live with whatever this diagnosis brings. You keep coming to visit, too.

Tell them that because of Joe's young age and history as a nonsmoker he should be evaluated at a comprehensive cancer center that has folks who are considered Lung Cancer Specialists. Truly, he wants people who really know what the heck they are doing to come up with a treatment plan.

Please tell them not buy into the prognosis...As we like to say around here "you are not a statistic".

Then tell them it isn't over until it's over....and Joe, where ever you are, there's a life to be lived between one midnight and the next.

Unless a bonafide "cure" is found, I'm never going to be "cured". But what I AM going to do is live with Lung Cancer and treat it as a chronic illness. I can live a very long time doing it this way. I already have.....and I don't see why he can't do it, too.

Fay A. Stage IV Lung Cancer Survivor 4 years, 11 months, 7 days

[Andrea]

John,

I concur and ditto what was said here. I just want to add one thing seeing that you are in Orange County. We have the absolutely best most amazing wonderful oncologist at Hoag Hospital-- Dr. Neil Barth. When my mom got diagnosed and I was throwing names around at my office, which does med mal defense, I heard comments that "Dr Barth walks on water" and has saved many lives. The stories I heard from patients at his office are inspiring.

Second, I am 31, around the age of your friend. Since my mom got diagnosed 6 months ago I have become very active doing what I can for cancer. If your friend or your friend's wife want to talk to someone, tell them that you know a 31 year old attorney who lives and works in Irvine, whose mom is battling cancer and whose mission in life is to find a cure and do what she can for cancer. My e0mail is andreascheff@cox.net