An Update and Need Some Help

[anrean]

As if having lung cancer isn't bad enough, the Head and Neck specialist is not happy with the tumor on my vocal chord. He commented that "It does not look good" and even I could see the difference on the videos from 3 months ago and Wednesday. Right now he wants to take a "wait and watch" approach, which is fine with me.

The pulmonologist got me to agree to O2 on Monday. It feels like a step backward instead of going forward. I've known it was coming, but the reality is difficult to accept. During the testing before talking with the doc I had a very mini meltdown when I couldn't complete the breathing tests. Doc said the O2 will help get a better sleep pattern and help get through the muggy/rainy days when breathing is so difficult. He is right that this will improve quality of life, I just hate another new normal.

See the lung ca specialist on August 17. They will do a scan in the morning and we will talk about options in the afternoon. I'm sort of spooked because there are now 2 tumors of significance, and 10 critters working their way to growth. One tumor is already a crispy critter thanks to rads. I don't want surgery. If we can just keep radiating them, I'll be a happy camper.

However, all of this has left me feeling overwhelmed. The worst time is late at night. Does anyone know of a late night talk or computer chat line that can help late at night?

Thanks and God Bless

Lauri-Anne

[JeanE41]

You certainly have had a lot to deal with. I find, particularly in times of stress, that I think I'm ready to go to sleep, turn over and the brain kicks into overdrive. I have found no solution to it and find it very annoying, which makes it worse. Sometimes reading helps, but I have not found a good solution. Even physical exhaustion doesn't seem to help. I hope you find one and share it with the rest of us.

My thoughts and prayers are with you as you face these challenges. Cancer certainly gives us a run for our money and takes us on a bumpy ride. Take care.

Jean

[anrean in reply to JeanE41]

Hi, Jean

I'm the opposite - my body wears out easily now, and I will sleep for 2-3 hours at a time, but go back to sleep. Even with a prescribed sleeping med, I wake up - usually because it is hard to breathe. Doc says the O2 will likely let me sleep longer. On days like today I will spend way too much time resting and sleeping because yesterday's 2 doc apptmts wear me out.

Talk to your doctors about having trouble sleeping. I take an anti-anxiety med every morning to help my head shut up. Then at about 9pm I take the sleep med and wait for it to kick in, which is usually within 1/2 hour.

It is the middle of the night when I get up to use the bathroom that the uglies set in and sometimes feel the need to talk. So far, since my best friend of 35+ years passed away last year I've kept things pretty private with other friends. Maybe it is time to change that...but that is hard to do. I don't want to worry anyone or have them treat me any differently than they do now.

This constant need to find new normals over the last 15 years is very difficult.

I wish you the best and will keep you in my prayers

Lauri-Anne

[JRuthI1946 in reply to JeanE41]

Jean, I agree it's a bumpy ride. Sleep evades many , and it seems the older we get the less we have restful nights.

I have had to resort to clonazapam. I tried all other sleeping aids. They all worked well for about 3 weeks.

I know clonazapam is addictive and many don't like to prescribe it for that reason. At 72 I am not concerned . I think a good night's sleep is more important?

Not too sure a GP would be willing to prescribe it.???

There are many nurse practicioner physiologists that can precribe. Some do, and some are not certified to do so. If you see one who is not able to prescribe, then you have to see the psychiatrist to prescribe. Crazy system.

I am not trying to encourage drugs, I just think as an informed adult I should be able to make my own choices.

I hope you sleep better tonight

[Denzie Moderator Volunteer]

The Cancer Survivor Network division of the American Cancer Society has a 24 hour chat line. There's rarely anyone on during the day but late at night you are likely to find someone there.

csn.cancer.org/user/login?d...

[anrean in reply to Denzie]

Denzie, I called them and it would have been better to talk to the wall - no discussion, he just listened without saying 10 words beyond the greeting. I need a real human who can converse.

Thank you though for your input !!

[Denzie Moderator Volunteer in reply to anrean]

They have an actual chat room where you can connect with other patients. No guarantee that there'll be lung cancer patients but there are patients and caregivers there.

csn.cancer.org/csnchatroom

[anrean in reply to Denzie]

THANK YOU, Denzie. Don't need others to have lung ca, just need to talk and listen to people who understand the rigorous path ca can take. In group settings there are times to listen, and times to have your say. What I want to talk about most is the end of life factors and how others are handling knowing the clock is already ticking. I'm not scared of being dead because I know I will be with our Lord, but I am afraid of the process and need to work that out

God Bless

Lauri-Anne

[Mardee in reply to Denzie]

Good info. I did not know that. Yep the nights get you.

[cloft]

I know it is tough. I was put on O2 at night and with walking. I new it is a new normal but you get used to it. The O2 at night really helps me get through the day. I was getting so tired and had to take naps during the day. Hang in there . Thoughts and prayers heading your way.

[anrean in reply to cloft]

Hi cloft, Thank you for your input, it has helped. Hopefully the O2 will aleviate some of the constant exhaustion. I've been sleeping night and day for too long. Been battling ca for over 15 years - lung is my 5th primary ca and I am tired of having to constantly get used to a new normal. On the other hand I should not complain, just found out that a friend's leukemia has mets to the brain. I am blessed so far! You are in my prayers.

[Mardee]

I feel for you Anrean. I use to play solitaire and mahjong , sometimes all night just to keep my mind busy. I belonged to many on line groups but a lot of people sleep! Inspire is a good site. Somedays I could not take any more "words". I stopped looking up lung cancer on line for a time because I was terrified. I had no support systems so I kinda waded through all of this on my own. I did get two second opinions, got all my records together and went to UCLA and UCSF. After that, I was much calmer and had more confidence in my decisions with my doctor. I had surgery. No chemo or radiation. Five year follow up. CT scans every six months for three years, last two yrs will be yearly. After that still receive yearly ct cause I was smoker for so long. I still play solitaire on line to scare away the cancer fear.

Good luck. Your in my prayers.

[Debby1125]

If you are on facebook, there is a closed group for chronic illness. So many of these folks are up at night and can't sleep thru the night

I chat there sometimes when I get into myself too much. Good luck and feel better!

[judg69]

Laurie-Anne, you have a great attitude!

I do have one thing to suggest , however, and that is to not be afraid of surgery. Surgery is what saved my life. To be sure, I did have maximum radiation and over 2 years of heavy duty chemo, but without the surgery it would all have been to no avail. So keep your dobber up and keep plugging! Kindest Wishes, judg69