Talking Frankly about Living with Advanced Cancer

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.

Vicky:
That is a helpful and good suggestion!
Teresa

@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

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

Vicky, @vsinn2000
I know what you mean. I gain incredible strength from the stories of others here. We have people in our community with strength and determination like I've never seen before.

Teresa

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn't know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don't go put when I can't appear healthy.But anyway the Dr. didn't seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don't know me ( I haven't been on in a while) I have metsastic Thymoma

Teresa,
Quite honestly, and more appropriate perhaps in another forum, the Mayo Connect community has encouraged me, supported my meltdowns, shared in my small victories and sent a flood of support that I cannot thank everyone enough for! I do occasionally try to reach out, not as often as I could so I will try and make that change. It really makes me feel Ike I need to "put on my big girl panties" as I read some of experiences shared.
Vicky

Vicky, @vsinn2000

I'm glad that you have found value in our community. I feel sure that you will be part of sharing those truths, devotion and courage as you face your own challenges! I'm so glad that you found your way to Mayo Connect.

Teresa

I am truly humbled by the brutal honesty, hard truths, loving devotion and courage shared here. I have no other words...

Hello @saltis

I am sorry to hear that you have been hospitalized and not well but glad that you are back home. You made some very helpful comments about the newly diagnosed people in our group. It does take awhile to get our hands around a cancer diagnosis and the long term implications of it, doesn't it?

Please keep us updated as to how you are feeling. We have many in our group you are dealing with breathing problems right now. I'm going to tag some of our members who have also dealt with breathing problems, I'm sure they would like to give you some words of encouragement, @windwalker, @shortshot80 and @llwortman.

Yes, I will remember to "enjoy the life I have." Thanks for that great reminder!

Teresa