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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.

Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Sep 15, 2019
In reply to @jazzjen "Thank you for the reply. I think that just talking with people on this connect will..." + (show)
@jazzjen

Thank you for the reply. I think that just talking with people on this connect will help. Are there others with this rare clear cell ovarian cancer and auto immune diseases as well? I have been soooo positive through this treatment. But I think I expected to feel good now that cancer is in remission and I don't. The lung problem keeps me down.

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Hello @jazzjen,

I just noticed that it has been a while since you last posted. I hope you are doing better. How are your lung problems? Any new treatments?

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richcolleen | @richcolleen | Sep 17, 2019
In reply to @rochellewisner "After Chemo, my short hair, everyone seemed to like it better! Just being kind I think...." + (show)
@rochellewisner

After Chemo, my short hair, everyone seemed to like it better! Just being kind I think.
Thank you for the reply.
I’m just trying to find someone who has had the combo Carboplatin and Doxil. Or even a different combination with Carbo. Best of luck to you teal sister. R

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I’ve lost over half and is very thin and still falling out everyday.don't know if I’ll lose all or not. This happened after 6 treatments. Hope I’ll look,as good as you do when or if it stops. Meanwhile I’ll keep vacuuming it up.

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1 reply
ginpene | @ginpene05 | Sep 17, 2019
In reply to @richcolleen "I’ve lost over half and is very thin and still falling out everyday.don't know if I’ll..." + (show)
@richcolleen

I’ve lost over half and is very thin and still falling out everyday.don't know if I’ll lose all or not. This happened after 6 treatments. Hope I’ll look,as good as you do when or if it stops. Meanwhile I’ll keep vacuuming it up.

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I don't know if this is helpful, but I simply had my hair shaved off. Seemed less torturose somehow...

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rochellewisner | @rochellewisner | Sep 30, 2019
In reply to @shortshot80 "testlady, I understand your feeling too, In 2015 I was coughing a whole lot, went to..." + (show)
@shortshot80

testlady, I understand your feeling too, In 2015 I was coughing a whole lot, went to the emt and he took a xray, said I had Pneumonia, primary care doc wanted a cat scan. Which showed fluid in my left lung. So had to have that drained October 27.2015, again in november. My heart doc said to get a lung doc, which id did who sent me to a lung sureogon (sp) can't spell tonight! Anyway Jan 22,16 I had lung surgery. Doc put a 2inch 4 foot long in my lung to drain. Couple days later told me I had two kinds of lung cancer. One pplain ole lung cancer the other is Mesothelioma. This is from Asbestosis that my husband worked with while mixing plaster for plasters from 1955 to 1983. Nothing can be done with this. I have the blank thinking at times, perhaps this is the fog you talk about. One of the things I have done is attend church Sundays & Wednesday evenings. This is prayers for me and I can talk to the group. Witch eases the fog some. Talk to someone besides your psychologist. Other people without a "degree" does and will help. Best of prayers for you! (shortshot80) Nancy

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Hi, I agree with the person who “said, talk to someone without a degree in psychology.
They are so prepared with what they are going to tell you that they don’t listen. I had a terrible time with one. She must not have been listening because she gave me a book on a troubled life with parents! I had a great childhood growing up on a farm in Washington, I’m still close with my childhood friends and my parents were wonderful.

They seem to get so far off track and that’s because most people who go into Psychology had many childhood problems.
“(Talk with people who understand your fears of the disease we have.)
I will never talk to a person who thinks they know our fears , unless they have experienced them first hand.
I’m on my second recurrence, its not easy, but I want to get the most enjoyment out of what life I have , look for the good in people and you always find it.
The teal sisters I know are the Best bunch of women , positive
and wanting to help others
with anything that are dealing with in their Cancer journey.
Look for the Beauty and you will see it.

REPLY
1 reply
rochellewisner | @rochellewisner | Sep 30, 2019
In reply to @odette "I had taxol with carboplatin for my frontline treatment, but I developed PN with the first..." + (show)
@odette

I had taxol with carboplatin for my frontline treatment, but I developed PN with the first round so it was quickly modified and then eliminated. With HGSC, I don't know what drugs are used (I have OCCC). Did you have germline testing as well as testing of the tumor? The treatments can be targeted with that knowledge, I believe. By the way, I think your short hair is quite flattering.

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I’m on my second recurrence now, with Carbo and Doxil, the third was my bad day, but it could have been worst if I hadn’t fasted for 60 hours.
And that was hard, I like to eat, but I was told the best way to do it was to fast and it effects the cancer cells harder! Well I like that idea, and I didn’t get very much nausea either.
So far so good.
I declined on the major surgery , because I didn’t think I could handle it, but mostly because they have shown that taking Chemo or the surgery doesn’t show any difference in recurrence. In fact Germany is really studying this idea and believe the Chemo does the same results without the damage the surgery does to our bodies.

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1 reply
richcolleen | @richcolleen | Sep 30, 2019
In reply to @rochellewisner "Hi, I agree with the person who “said, talk to someone without a degree in psychology...." + (show)
@rochellewisner

Hi, I agree with the person who “said, talk to someone without a degree in psychology.
They are so prepared with what they are going to tell you that they don’t listen. I had a terrible time with one. She must not have been listening because she gave me a book on a troubled life with parents! I had a great childhood growing up on a farm in Washington, I’m still close with my childhood friends and my parents were wonderful.

They seem to get so far off track and that’s because most people who go into Psychology had many childhood problems.
“(Talk with people who understand your fears of the disease we have.)
I will never talk to a person who thinks they know our fears , unless they have experienced them first hand.
I’m on my second recurrence, its not easy, but I want to get the most enjoyment out of what life I have , look for the good in people and you always find it.
The teal sisters I know are the Best bunch of women , positive
and wanting to help others
with anything that are dealing with in their Cancer journey.
Look for the Beauty and you will see it.

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Agree with you!

REPLY
1 reply
tanyabaust | @tanyabaust | Sep 30, 2019
In reply to @richcolleen "Agree with you!" + (show)
@richcolleen

Agree with you!

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Unsubscribe

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 30, 2019
In reply to @tanyabaust "Unsubscribe" + (show)
@tanyabaust

Unsubscribe

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@tanyabaust Currently you have selected to follow the Brain Tumor and Cancer groups and to receive an email every time a new post is made. You can change your email notification settings to no longer receive emails. See instructions here: https://connect.mayoclinic.org/get-started-on-connect/

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starko | @starko | Oct 1, 2019
In reply to @rochellewisner "I’m on my second recurrence now, with Carbo and Doxil, the third was my bad day,..." + (show)
@rochellewisner

I’m on my second recurrence now, with Carbo and Doxil, the third was my bad day, but it could have been worst if I hadn’t fasted for 60 hours.
And that was hard, I like to eat, but I was told the best way to do it was to fast and it effects the cancer cells harder! Well I like that idea, and I didn’t get very much nausea either.
So far so good.
I declined on the major surgery , because I didn’t think I could handle it, but mostly because they have shown that taking Chemo or the surgery doesn’t show any difference in recurrence. In fact Germany is really studying this idea and believe the Chemo does the same results without the damage the surgery does to our bodies.

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Just want to say I truly believe in fasting. I fasted for at least 36 hours each time I had chemo and although it was never a walk in the park, I never felt even remotely nauseous. I am in remission but still fast 16 hours for five days each week. It makes me sleep better and gives me energy.

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