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Talking Frankly about Living with Advanced Cancer

Posted by Colleen Young, Connect Director @colleenyoung, Sep 1, 2017

Are you living with advanced cancer (sometimes referred to as stage 4 or metastatic cancer)?
This discussion is a safe space where you can connect with others to talk about the realities of living with limited time. It's not easy to find people who understand what it is like. For many reasons, you may not feel comfortable talking about your thoughts and emotions with friends or family. Perhaps you are alone. Even if you are surrounded by people who support you, you may experience intense loneliness.

Connect is a place where honest conversation can safely take place. You can speak frankly and be heard without judgement. I invite you to share your reality facing death and living now.

Interested in more discussions like this? Go to the Cancer Support Group.

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rebeccaz | @rebeccaz | 2 days ago
In reply to @sistie "I have been battling metastatic breast Cancer now for almost 7 years. I never thought I..." + (show)
Profile picture for sistie @sistie

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

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@sistie
Sistie, it must be even harder to cope with financial stress on top of everything. I suggest you start looking into Medicare secondary insurance for Part B and for drugs. We have been satisfied with AARP's plans. After almost 5 years of extensive surgery and Chemos for my Ovarian Cancer, we have had complete coverage for all treatments. Re drugs, thanks to the Biden administration, there is no longer a donut hole this year. After you pay up to a certain amount of co-pay for drugs out of pocket/year, (I think it is $2100 in 2026) your drugs from the pharmacy are free of charge. Believe me, I'm in that category as of a month or two ago this year.

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proftom2 | @proftom2 | 1 day ago

Unexpected consequences of my aggressive Stage 4 prostate cancer. Year one was jump off the cliff horrible, pain misery beyond belief. Sleepless falls, broken bones, couldn't standup alone without assistance. Years two, Three, improvements, I started responding to the treatments. Year 4, best version. Numbers are good, but all that work in the gym, walks, mindful nutrition diet, mediation, chair yoga. Reading, constant trips to the library trying to read all the great books I've missed in my life. Loving family, supportive community. Leads to today looking in the mirror cancer and all I'm best version right now. Bless us all.

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