Talking Frankly about Living with Advanced Cancer

Allison,
I'm truly sorry that your concerns and questions weren't answered or addressed. Perhaps an appointment with both doctor and radiologist would give you the information you are looking for in a neutral setting? It sounds as though you are frustrated right now but have been with your doctor for a while. I'm new enough that I am not sure if each hospital has their own set up, or if a care team meeting would be a normal part of the process? I am still meeting all of mine to get treatment started but I believe I will ask if this would be possible if I had concern or an issue like this.
Vicky

@allisonsnow

I'm glad that you checked in with us. I've thought of you often. I so sorry to hear that the recent scans did not show improvement. I can't imagine how difficult that was for you to hear. I can also understand your unwillingness to be a guinea pig for a treatment without a track records - I think most of us would choose quality of life.

When the doctor said that you were handling the side effects of treatment well, do you think he meant that your blood work does not show serious problems with your current treatment?

I think we all have the "but you look so good" problem when we face the world with our best face forward. I'm sure that family and friends do not realize how much effort cancer patients put into "looking good" and putting forth a good image. Please know that we want to continue to care and support you during this time.

Will you please keep in touch and let us know how you are doing and how the treatment is working?

Teresa

Vicky:
That is a helpful and good suggestion!
Teresa

Sarah Young has some very well written Christian devotion books. One of my favorites is Jesus Calling or Jesus Lives. They are short one page inspirational readings with bible verses to cross reference to. These books gave me strength to get through my heart surgery and complications all caused by carcinoid cancer. Your friend is so lucky to have you, she needs you now more than ever.

@mollie59 Thanks for your suggestion! Teresa

Dear Kateia::
You are a wonderful friend. It is so special when we have people in our lives like you.
Just knowing “you care” is a great gift to all of us!

Looking at the end of life has made me appreciate each day,one day at a time. My lung cancer diagnosis really became my blessing. However,I did not realize this on my own.

For me, I will always feel blessed to have been asked to be part of a “Paced Breathing” research study by Mayo Clinic -with Dr Amit Sood. There are now several books available written by Dr Sood. I have given out several 100 copies of “Happiness” as gifts. People really have loved the read.

At the brink of my life, I was afraid of dying. Hearing the words you have lung cancer was very scary and shocking! I was in denial.

The surgery to remove most of my left lung was extremely painful. My husband stood by my bed and told me to Breathe, Breathe, breathe!

I had never connected my mind and body and spirit to my death. I was afraid of dying more than the experiencing the joy of living. The lessons I learned in the study were life changing and I found true happiness. This makes people around me happy and less afraid of my dying.

Through the study, I took time to slowly breathe “in and out” and I learned to slow down and relax my “nervous system”, “mind and body”. The 15 minute dvd(now on my iPhone) has a calming voice that “talked to me” while breathing to relaxing symphonic tones! I practice this breathing several times a day!

With paced breathing, I am able to reconnect my mind, body and spirit. For me a life saving lesson.

I realized after learning to “breath new life again”, I became stronger mentally and I have happily accepted the fact, “No one gets out of here alive!”
I do not grieve my dying. I have let go of a lot.I am able to walk away from things that do not matter and feel good about rising above the the things I really cannot change. I’m living.

I will never forget the strength and love as of those who have stuck by my side through a very scary time.

I still thank my friends who so bravely “showed up” to support me, when some humans though they knew when would die!

Call it crazy, but it is comforting when my best friends and I giggle about dying. We are not being mean or insensitive...We all know we will meet again.

Give your friend a big hug for me & ask her to give you a hug back! You both are special. Thank you for sharing. Let’s stay Connected!
linda

@allisonsnow I know what you mean about being a guinea pig as well, BUT, I am currently receiving chemo that is NOT meant for my type of cancer (cholangiocarcinoma or bile duct cancer) and I am doing better than I have for the past year. Hard to believe, actually, how good I really feel. That being said, you just never know. My quality of life is pretty good. I also understand what you mean by everyone saying how good I look. I like how Teresa said people have no idea how hard we work at trying to look good before going out (at least most the time). You just have to do what feels right for YOU! Good luck and keep us posted what you decide. ~Kris

I agree with the Sarah Young books. Often I hear the words I need to hear that day - highly recommend! And I agree with Mollie - your friend is lucky to have you!

Hi Linda - I love your response. I feel very much the same about facing death. Some people have a very hard time understanding how I can be so accepting. The way I look at it, we don't have a lot of options. We can either be freaked out and unhappy, or we can choose Happiness - I've already looked up Dr. Sood's book and will be on a search for it at the library of my local Mayo Clinic. Thank you for the suggestion!

Hi friends,
Everybody tells me that I look fablous & not at all sick. Nobody ever told me that I look fab when it was important & I wasn't sick. 22 years of cancer & now for the last 3 years stage 4 & it has spread to my chest, too. Hopefully I would start my new treatment on Tuesday and by then I hope to be able to breath as before, normally. My new chemo is based on pills Capecitabin, 8 ones everyday in two weeks time & then a rest week & then I would continue two other weeks.
Sometimes I feel that my oncolog is a bit intimated by me and blurbs out words or phrases that are not so diplomatic but he is a human being and my fablousness puts him in disadvantage, lol! Like while treating my lung problem I started to notice that my right breast which was operated and a fourth of it was taken away is losing it's form and now is stuck like a clump on my chest and is a very little thing. Anyway he has never seen anything like it and then he tells me that I have lived quite a long time with my cancers and must expect organ failures in future. I asked him is there anything I can do?
He told me No, just don't expect too much! You mean no biggest lottery Prize? Between us I still feel that I am lucky and I have my family & friends around me. When I can breath I feel lucky & everything would work out for the best somehow.
Take care folk and enjoy your day, night ...