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Diane’s husband

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Hello,

Mg wife has been coughing since February 2019. Recent X-ray and CT suggested she has a lung cancer. My wife is in still waiting for biopsy result and PET scan to define the staging but it seems she has stage 3 or 4 NSLC. I also have two children - one is 14, the other is 11 who is also autistic. I am desperately looking for what I could do to help my wife to survive. 

Thank you, everyone. 

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Hello there,

Welcome.  I’m very sorry about your wife. I imagine she’s just exhausted since the cough has been ongoing for months (and likely misdiagnosed like many of us here). 

I really understand the urgency you have right now and it’s tempting to dive into Google for research. A lot of things about lung cancer are counter intuitive, Google and any other search engine is not helpful. 

The best guidance I can give you is to follow through on the diagnostic process which includes biomarker testing. This testing is critical for determining the treatment plan.  After that you will want to assemble “The A Team” which consists of experts with your wife’s particular type of lung cancer.  Hopefully you are close to a National Cancer Institute. 

I’d recommend calling the GO2Foundation (in San Francisco) to obtain recommendations for a treatment team.  The GO2Foundation has a YouTube Channel, earlier in the year they did a webinar on the diagnostic process & treatment protocols. 

Lugevity also has a helpline and other useful tools to map out the diagnostic process.  

You may consider notifying the primary health insurance company proactively to ask for a case manager to be assigned.  Case Managers are useful to help navigating the insurance coverage to avoid any unexpected costs   

  It’s important to take care of yourself and not burn the candle at both ends. If you’re working, now is a good time to take advantage of FMLA, unused vacation time or ask if HR will allow you to have colleagues donate time. 

This is hopefully some practical guidance to get your family through the diagnostic process. Treatment for lung cancer has seen many advances in the last three years.  Finding the best medical team is critical.  Don’t worry about offending anyone. 

Let us know how it’s going so we can jump in to help. 

Michelle 

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Hey man.

In the very early stages of dealing with this myself and like you my first thought is for my kids. I'm in no way an expert but I'm dealing with it the way I've always dealt with them. I tell them the truth but not all of it. Before the biopsy I said I had "masses' HA! Like we all don't know what doctors mean by that. Anyway, one of them asked if it was cancer. As It hadn't been confirmed yet I was able to say that was a possibility. It showed that this is serious but wasn't emotionally devastating to him.

Not telling you how to parent as I'm no expert and I of course don't know your family, but you may consider it as an option. They are smart and will know if they are being lied to. I think limited versions of the truth can help ease them into the process.

I'm sure there are more experienced people here will have better advice. Just know you're not alone in this.

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Diane’s Husband,

Welcome here. 

What can you do to help your wife survive? I suggest becoming a subject matter expert on our disease. How? Go to LUNGevity.org and read Lung Cancer 101. Start by understanding the diagnosis process and when a diagnosis is known, read up on her type and stage treatment. 

My wife’s questions during oncology consultations likely saved my life. She was the expert while I was huddled in fear. 

We didn’t have the complexity of children. Perhaps you might reach out to family and friends for taking care of kids while you care for your wife. For rough planning purposes, if surgery is a treatment method you’ll need about 2 weeks of help. If chemo/radiation, then you might schedule her treatments during school hours. 

We’ll know more as your diagnosis is made. 

Stay the course.

Tom

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Diane's Husband,

I echo what Tom has said - become the expert and advocate so your wife can focus on her fight.  This is how my mom and I were.  My mom can't even tell you what type of lung cancer she has, she left that up to me.  I keep all of the records, I do all of the research, while she focused on doing what her docs told her and taking care of herself.  Luckily I found these forums and the LUNGevity website to help with my research and support.  

My mom did not have the stress of kids at home.  But she was the caregiver for my dad (I use the term "was" because he now lives in an adult family home).  While my mom could easily manage taking care of herself, my dad was another story.  Also, I live and work about an hour away from my parents, so staying every night with them was not possible.  So we had to rely on the help of my mom's 2 sisters.  They were happy to bring a meal to my dad or sit with him while my mom was getting her treatments.  

The reality is that you will probably need some help.  It might be just periodically or it might be regularly, but you will need some help.  The key is when you ask for help, be specific. People often want to do something but they don't know what to do.  Or they do something that they think is helpful and it's really not.  So direct people to what you need.  I have a very small family (me, my parents, 2 aunts/uncles, and a cousin).  So far, we have survived 4 years of this.  There were times where it was not easy nor ideal, but we survived.  You can too.

Please feel free to reach out to us.  We are here to listen and help, if needed.

Take Care,

Steff

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