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.

ankona | @ankona | May 30 8:34am

In reply to @birdman518 "My heart goes out to each and every one of you, and to your loved ones...." + (show)

@birdman518

My heart goes out to each and every one of you, and to your loved ones.

My beautiful loved one, known here as "Birdman518", passed away from a very rare form of metastasized melanoma to his very gifted brain, on Oct. 9, 2024, I do not have words to describe the depth of my sorrow. He was 68 years young.

My Birdie's first symptom that anything might be "wrong" was on Aug. 18, 2024 when he noticed a slight drool from one side of his mouth, as if he had had Novocain. We went immediately to our local ER, thinking maybe he had Bells Palsy. A CT scan revealed 6 tumors in his brain. The droop was, in fact, a stroke, from which, incredibly, he recovered and had no others (anti-seizure med and steroids).

I took him to Moffitt Cancer Center in Tampa where he was immediately admitted to ICU for more scans. After 4 days of this, Birdie asked for the truth, if ANYTHING they were proposing (MRI of the brain, mapping of the tumors, radiation of the tumors, brain surgery) was going to make his life better than it was "right now". One very honest doctor admitted that it would not, and that his type of melanoma was so rare they had no immunotherapy to try against it, although they were willing to "guess" and try "something".

He asked if anything they were proposing to do for his brain was going to address the tumor that was found in his liver. The answer was, "Not now".

He asked, "How long?" and was told by the very honest doctor, "You are unlikely to be with us in a month".

My Birdie told them that he was going home, where I cared for him with the help of hospice until he passed away 5 weeks later.

Things for which I am grateful, even in this terrible loss:

I am grateful that Mitchell was in my life for 42 years.
I am grateful that he did not have any pain throughout all of this.
I am grateful that it was not sudden death, so that I could process all of it with him.
I am grateful that he spent his last weeks with just the two of us and not in the hospital where the outcome would have been the same but much worse for both of us.
I am grateful to Mitchell that he trusted me to care for him and that he made that choice, although I would have stood beside him with whatever choice he made.
I am grateful for the support this group offers to each other in such a kind way.

I honor Mitchell by keeping on each day even with a broken heart.

My best to each of you,
Lauren

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Thank you so much for this detailed reply. So sorry for your loss, but glad that you seem to be at peace with your decisions. I need more info like this to make decisions of my own. God bless.

lauramae3 | @lauramae3 | May 30 9:37am

With tears in my eyes from reading your experience I sincerely hope your future holds beautiful things for you. You certainly deserve it.

birdman518 | @birdman518 | May 30 10:06am

Of all the hard things I've had to do since learning of Mitchell's inconceivable but unavoidable death, telling all of you was one of the hardest. I'm still crying. I wish you peace in your journey as you make your decisions.
I will tell you that I "feel" Mitchell with me, encouraging me. Whether anyone believes it or not, the night after he died, he came to me as clear as anything and said, "I built this for you; don't you give up". He meant our life that we built together, and to not give up living because it is a gift that must not be wasted.
Peace be with you,
Lauren

cookercooker | @cookercooker | May 31 1:32pm

In reply to @ankona "about a year ago I had a baseball size meningioma removed from my brain. Unfortunately, it..." + (show)

It breaks my heart to hear you're so unhappy that you'd rather not consider your options other than refusing surgery and further treatment. There are no guarantees in life--I didn't think I'd end up with stage 3 extremely aggressive, serous endometrial cancer. But there you have it. And I at one point thought "What's the point of going through all this pain and nausea and numb fingers and and toes, if it's going to get me in the end anyway?" My life isn't great: I don't have a particularly good relationship with my spouse either, and most times I don't feel like going home after being out with friends. Neither do I have children or anyone else significant in my life. But, I still hope that the treatment will work, even if it's a just a little bit to make my days a little easier. In fact, the treatment I'm on now (I had previous chemo treatments that didn't work) has shrunk my tumors, yet minimally to my lymph nodes. I have decided to take more control over the direction my own life once I receive the results of my next CT scan. This will mean addressing my home-life situation, work, travel, and whatever else I need to do to live the life I want, for how ever long that may be. I regret not having this conversation with myself while I was healthy.
You too can get out of your situation, if you take control and look to the future rather than at your present circumstance.

pml | @pml | May 31 9:03pm

In reply to @birdman518 "Of all the hard things I've had to do since learning of Mitchell's inconceivable but unavoidable..." + (show)

Hi Lauren,
I'm so sorry to hear of the death of your wonderful husband. I know it's hard to lose a loved one. My husband died last July, 2024. I miss him terribly. I believe what you said about your husband coming to you the night after he died. That's wonderful! I feel my husband's presence after he died also. Both of our husbands are up in Heaven and out of pain. We will be with them eventually in God's time. It's just hard waiting. What helps me is prayer and a lot of it. I also talk to my husband. That helps too.
I wish you the best and will say a prayer for you.
PML

eileen11108 | @eileen11108 | Jun 1 6:39am

In reply to @pml "Hi Lauren, I'm so sorry to hear of the death of your wonderful husband. I know..." + (show)

Hello all, I am sitting here crying, My husband went in for a cardiac catheterization on March 13 that turned to a nightmare. He coded twice and died the next day. He never was conscious so I could not say a goodbye to him that he could hear.
Just like you I talk to him and hold him in my heart.
Love, Eileen

bradthompson88 | @bradthompson88 | 5 days ago

I am recently diagnosed with stage 4 pancreatic adenocarcinoma that has metastasized to my liver and other places.

I’m reading lots about this disease and haven’t even started chemo yet.

But, since I’m in palliative care, my thoughts alternate between many years of remission to short term fatal illness. I feel compelled to get my affairs in order but I don’t dwell on an early death often.

I share everything with my wife of 33 years but I do worry that as she becomes my caregiver, I may overburden her with my feelings.

Maybe I will be able to teach this fall? Maybe not. How much will I be able to do with chemo? Will I end up going to ER with complications? How do we continue with one income? I am a band and Career and TEch Ed. Teacher and I LOVE teaching. It is more than my job, it is part of who I am. I believe in relationships so I work hard on building them with my peers and my students. Our school is k-12 of 180 kids so summer small…hence wearing 2 hats.

Not being able to teach means there will be no band or CTE classes as the teacher shortage is much worse than the media portrays. I already feel the guilt of things I may not be able to do; Someday, hold a grandchild, give advice to my grown sons like my dad did for me. Take my boys fishing…

Dealing with the guilt of letting all my students down(though completely irrational I know) is something I think about.

Losing weight and becoming weaker…how my kids will see me. How my wife will eventually have to bury me. How we won’t be able to grow old together.

Everything is still so new and raw. I like to think I am at peace for me, but how it will affect everyone else is what hurts.

I am 55 and in very good health and am going to try to do some clinical trials along with my chemo. We live 380 miles from Mayo in Rochester so that is where I will go except for regular chemo.

I don’t know if I should look to a therapist (I used one several years ago when bad bosses pushed me over the edge) to talk to because no one around me in my small town of 700 has this disease or anything like it.

My family and my wife’s family have been wonderful, but I dont want to be that person that has to always talk about the cancer. I want normal stuff when we visit.

Anyway, I go back tomorrow for a 2nd attempt at liver biopsy. Ct guided this time as tumors are so small. Then the port gets put in. Once that is in I feel like if I have denial, it will go away.

The crazy part is I feel completely fine. They found the cancer because I got pancreatitis. There weren’t even looking for it. I thought it was a complete gift to catch it early…only to find it had moved to my liver and lymph nodes and possibly in my thyroid as well. So much hopes going up then pushed way down. It’s a roller coaster and I hate roller coasters.

My wife and I are planners and this has shattered our ability to make plans.

Did I mention that we gutted our kitchen a week before the cancer diagnosis? I was going to do some of the work to save $$. Thankfully, small town contractor whose kid I teach will add that to what he was already going to do.

They are working really hard to get things put together before I start chemo so I have a place to crash(we are living in our basement now.)

As I reread this I can see how jumpy my thoughts are. I do type them out in a google doc for my benefit and so my wife can read them someday. Thanks for letting me get this off my chest. It makes me feel a bit better talking with people that will get it.

Turkey, Volunteer Mentor | @tomrennie | 5 days ago

In reply to @bradthompson88 "I am recently diagnosed with stage 4 pancreatic adenocarcinoma that has metastasized to my liver and..." + (show)

@bradthompson88