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Fay A.

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Posts posted by Fay A.

    Spoke with the NCI/NIH 2-3-06

    in LC SURVIVORS

    Posted

    They didn't "slam the door" on me. You guys have to understand that what I'm proposing is a long shot.

    But they didn't tell me "No" outright. They emailed me a list of information/films/discs/labs I need to send to them, which I will do first thing on Monday morning.

    There has to be a first time for everything. With every medical advance that takes place someone has to walk "point". I can do this. And if nothing else maybe whatever we try will add to the base of knowledge that leads to easily performed and safe treatments for late stage Lung Cancer.

    Do I have to become immune?

    in CAREGIVER RESOURCE CENTER

    Posted

    Lori,

    All I really have to say is I would give a great deal to have someone just like you advocating for me.

    I did the same kinds of things for my Mother during her illness. You have to stay on top of things.

    A big part of being a long term Lung Cancer Survivor is not allowing that same apathy you have so aptly described to go unquestioned.

    I am having to do for myself the things you are doing for your Mom. I know how stressful it is. All I can say is God Bless you for being exactly who you are. And as far as the SF's sarcastic "Doctor", well, the next time he does that politely ask him just how much time has he spent doing the research that will give an indication as to whether or not the care being given is appropriate.

    You are wonderful.

    A Primer on How to Live

    in HOPE

    Posted

    They called today while I was at my Onc's office. No chemo because the red counts are too low, and I have another lung infection. By the time I made it home it was too late to call the East coast. Will get up at 6 AM to do the call back tomorrow. Found out today that the Head of the Nuke Med section of the imaging center I had the CT-PET done decided not to read my scan and generate the needed report, or talk with my Onc (who called them twice today), but rather decided that the descrepancies in the report will have to be addressed by the original reading radiologist who won't be back in the office until Monday...Meantime I am left with no information, no plan, no treatment. I am trying not to allow my anger to overtake me. My local Oncologist is very upset about the way the Radiology group has handled this. I'm really surprised. They have always been so good before.

    If I Win The Lottery...

    in JUST FOR FUN

    Posted

    I've been imagining what I would do if I were to win one of the big money lotteries...

    If this were to ever happen the first thing I would do is build a group home for Lung Cancer Survivors who are in bad relationships. A place for them to live in comfort and security, with peace of heart and peace of mind. Where they did not have to worry about being physically or emotionally abused or neglected. Where they would be cared for as they should be cared for. And where they could care for others in return...

    If I live long enough, whether or not I win a Lottery, I am going to try to find a way to make this happen. You would be shocked at the numbers of people diagnosed with Lung Cancer (usually women) who are abandoned or abused by the very people who are "supposed" to love them.

    Prayers please

    in HOPE

    Posted

    Tami,

    The changes are ones that are necessary. But maybe you aren't supposed to be who you once were. Maybe the person you need to be now is BETTER than the old Tami. I personally believe that the Tami of the future is going to be healthier in all respects: physically, emotionally, spiritually. And it will come together when you make the changes you know are needed.

    No one is going to tell you this will be easy. It won't. But it will be so worth it.

    A Primer on How to Live

    in HOPE

    Posted

    Kasey,

    The way I work it out is to deliberately picture setting the worry aside. I lock them up in imaginary boxes, and only let them out when I am prepared to work at finding realistic solutions to them.

    No word from NIH/NCI. But I also do not yet have the amended or reread CT-PET Scan report, and I need that to go along with the discs. I see my regular Onc in the morning, may or may not have chemo depending on today's labs. Will just have to see what the morning brings....

    But Kasey, today was a beautiful day. A little cold and windy, but the sun was shining and my daffodils are in bloom. I planted them along with white shamrocks and bright rose/orange Bouganvilla. It's a stunning thing to see! All three flowers, white shamrocks (oxalis), Yellow King Alfred Daffodils, and the vivid Bouganvilla, are in bloom.

    Feeding tube...what to expect?

    in NSCLC GROUP

    Posted

    Club Soda would not leave the tubing brown as did the Coca Cola, but you should first check with the docs. Also, don't assume that medication in pill form can be (safely) crushed to make it pass through the tubing more easily...This may not be true. Ask the pharmacist if medications can be crushed before doing so. Also, may want to check to see if any meds are available in liquid form for ease in taking.

    Thanks to all that loved Leslie221

    in GRIEF

    Posted

    Mark,

    We knew her for such a short period of time, and became very fond of her. I can only imagine your sense of loss after so many years together. I sincerely hope you do feel you can come here for the support you need. And don't worry about learning to navigate the site. It takes time, but I figure if I can learn how to do it anyone can do so. I'm not the sharpest tack on the bulliten board when it comes to computer operations.

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