Talking Frankly about Living with Advanced Cancer

I bet you would have @ventibug She was a pistol for sure! 100% full Italian, driven, loving, and an amazing partner who always had my back. She and I were about polar opposites. She was creative, an artist, and an entrepreneur who created a chain of five children's clothing stores and then reinvented herself as an accomplished interior designer. I don't have a creative bone in my body, can't draw in a coloring book, and always worked for large firms.

At the end of her life, when she was designing her Celebration of Life, she asked me to get a second sheet of paper. I did and asked why. She said it would be for the list of those folks she wanted me to invite to her Celebration. I said 'honey, these things are not usually done 'by invitation only' you know!' She responded with (pardon the language) 'Scott, I don't want someone in our living room blowing smoke up your a*s telling you how much they cared about me after I'm dead, when they didn't give a sh*t about me when I was alive'.

56 names. 54 attended (the only two who missed were overseas). She even picked the wine to be served. We drained 62 bottles that night!

Yes, I think you might have enjoyed her!

Strength, courage, and peace!

Brave to Kay and you! Keep up the great team
work! Bless you both!

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!

@hopeful33250
I have to travel to Johns Hopkins every three weeks. The schedule of treatment meds is really random at times. It almost seems like the doc is trying to trick the cancer into submission.

Some weeks I will receive the two immunotherapy drugs, chemo, listeria, and the GVAX. Other weeks it's just one immunotherapy, chemo, listeria, and GVAX. Then another week they may leave out the listeria but include both immunotherapy drugs without the chemo.

I don't care what they do as long as it does something.

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?

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.

@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?

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!