New Member

Bowesre

Hello! I am a New Member and a spouse to my husband who was recently diagnosed with lung cancer. I am here to connect with other caregivers and to hear ways to make his life better as we move forward in this journey. Thanks for taking the time to read this.

EES

Thoughts from a Stage 4 survivor

Hi Bowesre

While I was the patient and not the caretaker, I just wanted to say that if you ever wanted to bounce ideas off of me, I'd be happy to discuss.   Four years ago, I was diagnosed with Stage 4 non-small cell that had metastasized to my brain... Two brain surgeries, radiation on my brain, and 1.5 years of chemo later, I have zero active cancer cells.  And, minus 4 cats, I live alone and am 51.  Luckily, I remained very self-sufficient, even with the brain surgeries.  

The absolute hardest part for me was emotional support (I am very blessed with a rock solid group of friends and coworkers)... So, my best advice would be to remain understanding, forgiving, and a good listener...some of the meds your husband may have to take may cause mood swings - they did for me ...

One thing for certain is that I would not change anything that I went through...I learned so much about myself and others - and, had the opportunity to see so much good that had I not been sick, I would have never had the opportunity to witness.

A last note is that, know you will hear "big scarey" words (for me that was metastatic and craniotomy) ... but, they are just words ... always remember, words do not predict outcome.  

I wish you and your husband the best.

 

br_bernardo

Great to have you here!

Praying for your husband - and for you.

Please be strong and loving and patient. You are a blessing to your husband.

As a former caregiver I guess my advice would be, have something that you can do that helps you take your mind away from the stress : )

Abby76

EES said:

Thoughts from a Stage 4 survivor

Hi Bowesre

While I was the patient and not the caretaker, I just wanted to say that if you ever wanted to bounce ideas off of me, I'd be happy to discuss.   Four years ago, I was diagnosed with Stage 4 non-small cell that had metastasized to my brain... Two brain surgeries, radiation on my brain, and 1.5 years of chemo later, I have zero active cancer cells.  And, minus 4 cats, I live alone and am 51.  Luckily, I remained very self-sufficient, even with the brain surgeries.  

The absolute hardest part for me was emotional support (I am very blessed with a rock solid group of friends and coworkers)... So, my best advice would be to remain understanding, forgiving, and a good listener...some of the meds your husband may have to take may cause mood swings - they did for me ...

One thing for certain is that I would not change anything that I went through...I learned so much about myself and others - and, had the opportunity to see so much good that had I not been sick, I would have never had the opportunity to witness.

A last note is that, know you will hear "big scarey" words (for me that was metastatic and craniotomy) ... but, they are just words ... always remember, words do not predict outcome.  

I wish you and your husband the best.

 

Emotional Support

I was so glad to read your post.  I think it offers much hope as to what can be accomplished even at the later stages.  I wonder sometimes if reading the stats that are posted all over the cancer sites are doing anyone a favor.  What good does it do to know according to the stats stage 3a has 36% surival.  I think your oncologist should be discussing this he knows your whole story.  I am sure being dignoses with stage 4 non small cell wouldn't bring up many good stats yet here you are a survivor and it is wonderful to hear the impossible happened.  I go along with you.  I had stage 3a and surgeon said I had a chance to beat the cancer.  But I find my emotions to be the most difficult to deal with.  1 hour I think I am going to meet the 5 year mark and the next hour I think I will have a recurrence on the next CT scan.  I also need to lodge it in my brain words do not predict outcome.  Thank you again for your post.

ThatSchmidt

Hello I am encouraged by your posts so much. I am my husband's caretaker and he is in late stage metastatic melanoma to the brain and we are awaiting his discharge into the care of a pallative care/ hospice house where he will be reassessed. I am terrified but I know with the right treatments and support he can fight this against what the Dr's say. It has been a nightmare is anyone still around to maybe guide my hopeful way?

eDivebuddy

Sorry to hear about what you and your husband are going through. Has he started any treatments yet? Have you had biomarker testing done?

When it comes to prognosis, it's important to remember they are tools, not absolute predictors of fate. They provide a general idea of outcomes for patients with similar diagnoses, but they don't determine where an individual will fall on the curve.

I was once given a 0% two-year prognosis. The average survival time for my condition was estimated to be 3 to 5 months. That was over four years ago!

I have stage 4B lung cancer with metastases to my liver, lymph nodes, brain, neck, and skin. I've undergone chemotherapy, immunotherapy, a craniotomy, and radiation therapy. I may be a little worse for wear, but I'm still here—living and enjoying every day of my life. In complete remission.