Talking Frankly about Living with Advanced Cancer

Hi Colleen - I found my way to this discussion somehow. I wasn’t aware that it existed, but thank you for initiating it.
As you know, my 76 year old wife - Kay, has stage 4 metastatic NSCLC, and seems to be coping well with it...under her post op immunotherapy treatments..on-going since December, 2016. WE ARE BLESSED! KAY was diagnosed in April, 2015.
I can only say that KAY has a positive attitude, rarely complains and keeps busy with housework, and participating in her many card clubs and social gatherings. She plays golf with her group of gals on Mondays, and even helps with the yard work. She is a great cook!
Initially, she backed off on many of those activities...but says that she now believes if she slows down too much she will die! Fortunately, her infusions every three weeks leave her with minimal side effects!
We both know that her days may be numbered but choose to not dwell on that. Rather, we take life “one day at a time”...we spend time with family and friends and try to dwell on the positives! When asked about her disease, we try to explain it factually and then move on to the positive elements of our lives,
We try to help others understand the importance of listening to our bodies! If you have issues do not ignore them. If you go to a doctor for care and don’t like his/her strategy or answers get another opinion. This is so important! We got caught up in the pertuity of care with a pulmimologist who simply refused to admit that KAY had lung cancer. This went on for approximately 15 months and resulted in an unnecessary surgery for” gastro issues”!
She says her Bible study group participation has helped her immensely! She recommends that type of support to everyone living with advanced lung cancer! Her faith in God has helped us both!
We also believe the molecular study was crucial to determining her therapy. Had Mayo not ordered that study, we believe KAY would have by now been long gone!
We are here for anyone who wishes to talk!

Hello @nogginquest,

As it's been a little over a month since you last posted, I wanted to check in and say hello. I hope you are having less side-effects with your treatments.

Anything new going on with your clinical trial?

Thank you so much ❤️

Glad to help, @ld57feast.

Remember you can keep posting here as well. We have a new discussion group for anxiety and depression and you would find a lot of support there as well. Many of our Members in that group have lived with alcoholics and they will be very supportive of you.

Here is the link to that discussion, https://connect.mayoclinic.org/group/depression-anxiety/

Will you post again soon?

Windwalker, your reply was so good to hear. My husband is trying to quit drinking it had been 2 months. 2 beers later and the mean comes out. I truly believe you are correct, that the stress of watching me through this cancer is very stressful. Checking on him talking to someone and us talking in an intelligent, adult manor. I love Mayo Clinic connect! You made my day thank you

Thank you so much. I will connect today. Writing out my feelings and expressing everything has helped me. The Mayo Clinic connect has helped also. Thank you so much for this great advice. Ever bit helps.

I am so sorry to hear of your health problems, @ld57feast. It is understandable how an alcoholic husband could compound the feeling of sadness and loneliness. Might I suggest that you contact an Al Anon group in your area and perhaps someone could phone you with supportive conversations? (Al-Anon is a support group for those who have family members and/or friends who are addicted.)

I also did an online search and found that there are online (email) meetings. Here is the website where you can find a way to participate in them, https://al-anon.org/al-anon-meetings/virtual-meetings/.

Al-Anon members are very kind, supportive people who will gladly embrace you (virtually) and hold you up.

Sending you a virtual hug right now!

@ld57feast Hi there. You sound like a very couragious lady. I too have a husband that tends to yell at me too. He seems to do it at the very times I need him the most. Like the time I had an SVT episode where my heart rate was at 185 for hours on end and then caused a full blown panic attack. My brain was not perceiving that I was getting oxygen and I thought I was literally suffocating. He yelled at me to calm down and breathe as if I could stop that high heart rate myself. I finally crawled to my phone and called for an ambulance. I realize that that is how he deals with the stress when he feels helpless to help me. Perhaps that is what is going on with your hubby. I realize that his drinking is probably the real problem. Some people become mean drunks. Have you discussed this with him?

Great care team of hospice, friends and animals. Not a lot of pain. More oxygen deprivation and heart stress right now. Read a lot of positive books and watch pxyl tv a faith and joy channel no commercials and always a happy ending even in the face of diversity. Only hard part is when my husband drinks and tells me how worthless I am. He does so good when he is sober. This crushes me and unfortunately he is yelling at me now. Any advice on how to deal with this when I cannot move from my chair. Sad tonight.

Hi @ld57feast, thanks for joining this discussion. I see from your past messages in the sarcoma discussion that you have stage 4 chondrosarcoma, a rare cancer that affects the bones and joints. You write "comfortable and happy" -- which are encouraging words to read. Comfort isn't always easy to find in body and spirit, but it is obvious that you strive for this despite the health challenges. Do you have a palliative care team and good pain control?