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Hey survivors- question for you.


KatieB

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What advice would you give to those newly diagnosed? (Think back to when you were dx. and what helped you or what did you wish someone said to you or explained to you?)

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Katie,

When they first found my spot, the nurse kept calling it a "mass" and you could here the panic in the her voice. I wish she had told me right then that they found a spot and not to panic it could be a number of things. I wish they had told me that cancer wasn't a "death sentence" that lots of people survive and are even cured. I wish somebody had told me not to look up survival rates on sclc.

Dana

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(((Dana)))

What helped us was FINALLY connecting with survivors...and knowing that no matter how long or what kind of cancer, etc...you could go thru treatment with dignity and that there WERE survivors out there. HOPE...we needed HOPE when we first entered this journey...didn't get it until months later. It makes a difference.

Anyone Else?

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I learned............you must be vigilant and proactive on your OWN behalf. Nobody is going to look out for you as well as you do. Right now it is ALL about YOU. It's not time to worry about hurting someone's feelings (especially those in the medical field). You need to do what you have to do for yourself when you need to do it. I know I must have hurt feelings of doctors and friends alike. I had to learn how to TELL my friends that my life was NOT the same as it had been and I could not do things the way I always had ......lunches and dinners out, theater, etc. I was in a funk and just could not expend any energy on those social type things. Too bad if folks don't understand. I learned not to pay attention to stats found on the internet, BUT that the internet CAN be your friend when searching for info. I could go on and on, but the final thing I learned was that I am married to the most wonderful man on the face of the earth. I knew it before, but now I remember to TELL him every single day!

Kasey

PS: Forgot to mentin that 2 or 3 or 4 opinions is okay ~ yes, sometimes even necessary to get where you want to be!

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My advise would be don't be proud, take and ask for all the help you can get!

Get support, get someone to go to the doctor with you, to treatments with you or tests. If someone says "what can I do" say "give me a ride, fix me supper, listen to my feelings and concerns, help me look for information, mow my yard."

Just get all the help you can . Get sleep, get rest, get good food or at least carnation instant breakfast or some such thing. Ask for prayers.

There's probably something I missed.

Donna G

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Don't automatically consider this a death sentence, statistics are made up from both sides of the equation and there's nothing that says you have to be on the losing side.

I really appreciated my friends who knew my chances but didn't wring their hands over me, they allowed me to keep my sense of humor and still complain about the things we had always griped about (no bad hair days for me though!). My family didn't cut me any slack, we bantered as usual and my bald head was the core of many jokes.

The best advice the nurses gave was not to be a hero about pain and nausea, easier to keep under control than get under control, something so simple but so very powerfully true. I was also told that there was no shame in not being able to do the things that had always been so easy, I learned to ask for help..........the hardest lesson of all. I soon learned that I just needed not to fight the fatigue, a 5 minute nap was sometimes all it took to refresh enough to do what HAD to be done - not what I thought should be done. I found new priorities, which are still front and center in my survival.

Not any pearls of wisdom here, just take it one day at a time and take as deep a breath as your lungs will allow :wink:

Geri

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Echoing so many others, first of all, this is NOT a death sentence. Don't read the statistics for the many groups of LC, you are your own statistic. Having cancer can make you fearless, because what the heck else could happen? Regularity in the bathroom is more important than hair. Acne can be a good thing. Be careful when you drive, you don't want to get killed in an accident and waste all that good, expensive chemo.

Most importantly, God is aware of you. He knows how you are suffering and the Holy Ghost is there to comfort you at all times.

Joyce

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I will answer for Bill, who is not PC literate, but I, the caregiver, knows only too well what his answer would be:

I remember sitting there, with our GP's student doctor (a very intelligent woman from Israel, who had suggested to our GP that "maybe" Bill needed a CT scan) standing with us close and caring.

Somehow, I knew instinctively that she knew we were facing something dire.

Our GP was in another room and I could hear him making overtures to another couple concerning their medical concerns. He was so very nice to them - lucky them.

We waited .... for a very l o n g time.

When he finally got himself together to face us (I'm sure, knowing that he had dropped the ball, along with the pulmonologist he had referred to us) he gave us the awful words...It was like an ice box, cold, very cold, "You have, er, something in your lungs." He was not specific about the probability of what that might be.

After that, we told his assistant that we would NOT go back to the original pulmonologist, would not even consider that as a viable choice. We were given another, more competant doctor, in our opinion.

When I was having radiation, along with chemo, I saw our GP one night at the hospital. He literally avoided me, and would not look at me.

Following, we learned to be absolutely upfront about needs, and will never again worry for a doctor's feelings as it pertains to treatment.

They are only human and need to face that fact.

The oncologist we did finally see has been a vigilent, brave, and caring fellow. God bless him. But, you will not get these excellent professionals unless you fight in getting them.

Advice? Go with your gut, do not worry about being aggessive, you are your own best advocate. Cancer is serious business. It's a job for the patient. Bill has been at this for 4 years, and 8 months - not an easy slog.

Barbara

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I would echo what others have said about advocating for yourself and not just trusting everything blindly to doctors. If you are unsure of a doctor, find another, and if in doubt about a diagnosis or treatment plan, get a second opinion.

I also think that it helps a lot to keep your mind on an even keel (I know that's easier said than done). Stressing non-stop for long periods of time will only make things worse, not better. I instinctively go into a calm but determined fighting mode when faced with the kind of pressure that a lung cancer diagnosis puts on you, and I think that helped me.

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Well for me knowledge was and is the key. I spent countless hours on the internet (there are plenty of good reputable sites for research) reading anything, everything to learn and understand as much as I could. I think it is important to be as knowledgeable as possible to make decisions along with one’s doctor. I took things as they came down the pike, not getting ahead of myself. I never did and still don’t think lung cancer is a death sentence, that life was, is over or why bother—as far as statistics go they are what they are and was not going to kid myself, anyone or let it stop me.

I was very pro-active with treatments and it paid off, my cancer has been stable since Dec06 and right now lung cancer is the least of my (it’s been one health issue after another since 2002, see my profile) troubles. You need a good support (for me my wife, daughter and best friend as well have great doctors/nurses) team. I have, had my moments like anyone else but for the most part I stay positive and try to have a good attitude which for me helps when dealing with adversity.

There is no magic bullet or one pill fits all its lung cancer 101, you learn as you go along. I live life as normal as possible, focus on living, not dying and on what I can do not what I can not do. Had and have to learn to adjust to things as one goes along because life is not and never will be the same. Life is too short to sit around and let it go by, always could be worse and there is always someone who has it harder. Was not always easy or fun but regardless of what happens in the end at least I lived my live (did not let cancer win) to the fullest and kept my promise to my wife, daughter and best friend I would never give up or stop trying.

Rich

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