Talking Frankly about Living with Advanced Cancer

Hi Colleen & friends,
What a great Idea! I am sorry I am joining you now, but I was in hospital for the past 12 days. I have been living with cancer for the past 22 years and now my very worried doctors are seeing what eventual problems may attack one, due to chemo or other treatments. I have always had my treatments on my right side of my body & suddenly breathing became very difficult. I couldn’t even Take the dogs out so I did it just once a day and my sweet husband took them twice more. I didn’t get better, went to hospital & stayed 4 days & they drained more than 5 lt. liquid out of my right lung. Happy back home but after 3 days I felt the same again. Back to the hospital, more x_rays and then they tried this new treatment. I try to explain the best I can, they glued a piece in my lung together which doesn’t allow more liquid to gather. I am short of breath & everything incl. every step is an effort. Hope to be able to breathe normaly again soon. I miss it.
I think personally that we cannot give advices to people who received their diagnoses recently. The only thing to do is to listen to them and find something in their talk which helps us to start learning each other. Then maybe ask them what is their worse fear and trend carefully from. We are not all alike, our fears are different, life experiences quite unique and sometimes our golas not like each other. Wish you all luck & remember to enjoy the life you have. Hellos all the way from Stockholm❤️

My husband and I spent 1 1/2 hours at my friends home and enjoyed visiting with them.

My husband has SCC-Spindle cancer, and the immunotherapy killed his transplanted kidney. We were able to purchase a Medicare supplement through Cigna (American Retirement Life Insurance Company). Because he is on dialysis, the American Kidney Foundation is going to cover the premium cost for the supplemental insurance ($242/month). There may be a similar foundation for your condition(s). The supplement pays for all the copays. He has great insurance now through his work. When he loses that insurance, it will trigger a qualifying event which will allow purchase of Medicare Part D (drugs).

Also, he had three tumors - liver, diaphragm and neck when he had a PET scan in May. He was switched to Keytruda in June, and as of October 12, he had no detectable cancer. The doctors are amazed at the effectiveness of Keytruda.

Hello @kateia

Your friend is so fortunate to have you on her side. You have addressed some questions as to how to support your friend who is facing the end of her life. How kind of you!

I'm sure that she needs your presence with her during this time. Knowing that you care and that your friendship is important to her. I visited a friend who had made the decision to enter hospice. When I went to visit her I thanked her for her friendship over the years and I told her that I valued it. I reminisced about the trips we had taken together, the movies we had seen and enjoyed. She expressed similar gratitude.

I'll be looking forward to hearing how others will respond to what is important to them.

Teresa

I have a friend who has just made the decision to forego any more treatments. The cancer has spread throughout the body. I have always supported her throughout the two year struggle and continue to do so. My dear friend is a Christian and has the comfort of knowing that in the end he/she will be with Christ. My question for you, cancer sufferers, what can I do to keep spirits up and let my friend know that I care and want to help.

Hello @sistie

I appreciate the post you have written about your struggles with advanced cancer. You speak to some important issues. Financial issues are a big part of living with advanced cancer and the need for help with activities for daily living. I can understand many of the choices you have made to take care of yourself and that is admirable.

Do you have a supportive community of family, friends, church groups that you can call in to assist you? Have you contacted your local American Cancer Society Chapter? They might also know of some assistance available to you.

I hope that many others in our advanced cancer community will join us in this discussion. You have brought up some very important thoughts.

Teresa

I have been battling metastatic breast Cancer now for almost 7 years. I never thought I would live this long. I'm at the point where I'm afraid I will run out of money before I die. I had a terrible time this summer with pain due to a fractured vertabra. I had to hire full time (40 HR a week) help to do most everything for me. I didn't bother to see if I could afford it because I just simply needed it not to mention a dog sitter for my two dogs while I spent 23 days in the hospital. Things are finally getting better--much less pain after spine lapindectomy and radiation. More radiation for brain tumors and a tumor in my jaw. I've told my caregiver I need her only 20 hrs a week now which didn't go over well. I'd like to have her more but I just can't make ends meet. I've told everyone not to expect much for Christmas. My problem is when all this was going on I made my peace with death and was ready to go. I'm still ready. I don't have much quality of life, my money is running out and I'm afraid what will happen next year when I turn 65 and have to go on Medicare. I have good insurance now through my last employer but my understanding is Medicare
has lots of co pays for everything. Then there's that donut hole which I'm sure to hit fairly quickly with these out of the world cancer meds. I know I have the option of throwing in the towel and saying no more treatment but my cancer is actually fairly indolent most of the time and even if I just get palliative care I could live indefinitely. I could have said no to back surgery but I would have ended up paralyzed fairly quickly so I'm glad I did it. The brain lesions might or might not have lead to my death but I didn't want to end up severely cognitively impaired in my last time with my family. I am on blood thinners because I had a couple of DVTs last summer as well as a PE. I could stop taking those and see what happens

(shortshot80, Today in my world the sun is shining brightly, no wind. Can hear the ocean as I sit here at my computer. I am patiently waiting for my cancer doctor to call and tell me the test she wanted has be done and I can start chemo. Also this afternoon my husband, #1 son and I are going to the casino to play bingo. We like to do this couple times a month. Some times we even win!!!!. My friend also let me know he will be here next month and help me finish my book. That will be just great. Soon I will let you know about my book. Have been thinking about this project for about 30 * 40 years. Now I need to finish it as time is getting shorter. Nancy

Hi @testlady @hopeful33250 @tresjur @allisonsnow and @shortshot80 Today in my part of the country, the sun shines brightly for a while and then is covered by clouds a brief burst of showers. When the sun reappears, the water droplets on the pine tree glisten like diamonds. What does today look like for you?

Hello Allison, @allisonsnow

I've been thinking about you. I know that earlier this month you had a number of tests and appointments. How are you doing?

Teresa