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Linda661

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Posts posted by Linda661

    Mom is Gone

    in GRIEF

    Posted

    I'm so sorry for your loss. I'm glad you found that deep satisfaction in being there and fulfilling your promise. Please accept my sincere condolences during this difficult time. My prayers for peace go to your mom, you and the rest of your family.

    Linda

    Need advice on Grief Share support group

    in GRIEF

    Posted

    Even though I wasn't feeling the need for it, I was going to try grief support anyway. I hadn't cried much yet after the fact and I was worried whether I was just keeping it "bottled up"..... So I set out to try the grief support group offered through our hospice, and when I tried to go to the first couple of meetings there was no one there (and, yes, I had the right location).

    That did give me some time to think more about why I would go exactly. I'd tear up just thinking about hearing others' stories and images would just come to mind of comforting them.....so I came to the point where I was thinking well, I could help others ..... that's what actually stopped me from pursuing grief support. I really wanted grief support to stand for supporting me and my road to healing, not another avenue for supporting others when I was just physically and emotionally spent from doing that intensively for the last four+ years in various forms.

    I've found since then that the tears come when they want to, usually in quiet alone moments. I've even had neighbors and friends stop by unexpectedly during some of those times and I found those tears stopping suddenly (and this was around people who I am comfortable with crying in front of too, they understand). Apparently, for me, my moments are best experienced on my own.

    You'll know what's best for you there Sis. I pursued it at least first before I knew what to do for myself.

    Take care,

    Linda

    Still grieving an old wound.

    in GRIEF

    Posted

    Pat:

    I think I shot my literary brilliance allotment about this issue in Nick's thread just now, :wink: (in other words....really long post there), but please don't let the passing impressions of another cloud the spirit and support you bring to all of us. You are not a burden here and folks in this thread are circling the final point I made elsewhere in this forum:

    I can't be the only one who drew a heck of alot of admiration and inspiration during my battle days from the folks and their profiles who had experienced loss because....I noticed the huge numbers who had still defied the prognosis odds, even if the individual battle had been lost eventually; I hung on what they had to say and support offered as much as anyone else.

    You and the rest of us are important contributors. Please never lose sight of that.

    All the best,

    Linda

    A thought from another thread...because I am the type to

    in GRIEF

    Posted

    I have to agree that the profiles are very valuable for a lot of reasons (from everyone). Even if one did experience loss, these profiles help other members who are actively in the battle locate who has had what experience with what treatment options and side effect issues -- really saves time in asking and re-asking or hunting and searching for that information using only archived post histories.

    When we respond to other members, it gives the poster's history or experience with the issue that they are responding to. I used that a lot myself when I was new here and getting to know people along the way. Helped me zero right in on who to contact for thoughts when I had an immediate crisis on my hands with a decision needed within hours or me needing to dive right in to a new research venue for mom and I didn't always have a day or two to wait for an accumulation of general posted responses. Those profiles opened the door to many choices for PM support from patients and caregivers, for example, when I was in a corner and needed to reach out for specific help/guidance in a big hurry.

    I did spark to Nick's discovery of selectively omitting profiles in posts. I wanted that option when I'm doing multiple responses in a thread, for example, simply to save the readers some eye time -- I now know how to include it only once in a given thread if I want to. I might choose to use it when I'm responding to another member's post who has come to already know me as well. It's an option I appreciate knowing about.

    I hesitate to add this thought, but I'm going to because I think it's really important to consider on this issue in general with regard to the profiles of those of us who have experienced loss:

    I really think it's important to keep those in tact for all members because when I was in the battle, though I knew all the dismal stats, as I learned more about this dx from other general sources out there, I still found a huge number of people here beating the odds and having good quality of life happening even if the battle was ultimately lost for that individual. That in and of itself inspired me alot to forge ahead (and my mom DID defy the prognosis she was given too)-- I can't be the only one who draws inspiration from that.

    Anyway, those are my thoughts.

    Linda

    Removing the profile/timeline from posts

    in GRIEF

    Posted

    I had asked about how to do this as well -- I didn't know we had that option until recently.

    Thought it would be good for me to know when I'm doing multiple responses in a thread, for example....seeing my timeline once in a thread I thought maybe was all I'd really need to show. Especially in really long threads.

    Linda

    Please Think

    in GENERAL

    Posted

    Bill:

    Thank you for your openness and honesty about what has been troubling you. I cherish input like that, truly. I'm just not sure how any of us could really shield each other from ever running across the dismal bits that are around everywhere on this journey together. Most of us probably already read them before we ever got here (I did) and were relieved to find a place of support, knowledge, and experience that is willing to say "HECK NO" to such things.

    All we can do is stand united and know to ignore those things -- that's not what we're about...we're about helping each other and surviving (patients AND caregivers who support those efforts). And, as a caregiver who did suffer loss in this journey, I still come here to support others as I can.

    Say we each did edit "the negative" from our posts....then what do we do when we have to provide links to articles we can't edit because the info. is just too darn long to copy to a post? An author may have an article with 90% really good relevent information and the other 10% may be full of things we prefer not to read. I wondered this very thing with my own mom .... do I not show her such things that could affect a treatment choice she needed to make in case she becomes sad at the one or two points the author made that are a downer?

    Anyway, I'm so sorry for your pain and thank you again for your willingness to open up. Probably all of us have felt the same way emotionally of what you've described, not so much from what is or isn't on the board....just because it's a challenging journey to be on that asks us to be strong when we just don't think we have it in us to do it -- we can, united.

    Take care,

    Linda

    P.S. How did you do that Nick? I didn't know we could do that!

    Morphine and Extreme Mood Swings?

    in GENERAL

    Posted

    Your hospice nurse may be correct. My mom only had morphine briefly in the hospital just before she went to hospice care, but she exhibited really severe mood changes involving anger that were rather hard for me to take in her last stages, both before and after the brief morphine use. In our case, it was general shut down and probable brain mets.

    I'm sorry you're going through this. Just try, try to not take it personal and know that it's the disease .... try to cherish every moment with her, no matter what she presents. I ended up getting counseling from social workers on how to deal with the situation (hospice has them available to you) -- they know techniques for de-escalating the tension in the situation that might help.

    Linda

    Please Think

    in GENERAL

    Posted

    Bill:

    First I'll say that I have been following this and your last thread, but have no idea what is bothering you about information presented.

    That said, understand that everyone is going to present information that they truly believe is relevent and might be of interest to other members. As laypeople in this journey (for the most part), few of us are truly skilled in evaluating and editing content to a high standard. For a public forum, in my opinion, that is up to each member to evaluate information presented as to what is relevent or not to them and anything found useful, to discuss with their own medical team.

    I do understand your general commentary in my own way. While I'm a layperson, I do have an advanced degree in operations management & statistics and understand study design really, really well -- some information is questionable, but that is not the fault of the membership at large. Poor study design and too small sample sizes to draw conclusions on has been going on for years -- yet this is the stuff of headline news all the time. The validity of websites copied from is another issue -- that one also is tough for folks to judge.

    And...sometimes shreds of evidence is all we have found so far as a lead collectively...sketchy today, may lead to more tomorrow, but someone needs to talk to an onc. now about possibilities....thin lead, maybe, but something is at least something to consider....today.

    As I said, when you see information you think is questionable, just please ignore it for your personal use -- no one means any harm that I've found. We share a huge amount of information here, but we each have a responsibility to evaluate for ourselves.

    Researching in and of itself leads to many "red herrings" along the way. That's just a part of the reality of research advocacy.

    Sincerely,

    Linda

    Nephew's Grandson

    in GRIEF

    Posted

    Don:

    Just knowing that you're here in spirit is enough....even that, well, you need to do what you need to do for you right now -- this time of grief feels odd and I've got to say, most of the time, I'm not sure exactly how to "be." Sounds like you are in a similar state.

    I think you captured it really well by saying that it's like seeing your history being wiped out with the events you've experienced -- me too (too long a story to tell), and I don't know what to do with that either, exactly.

    You're a much more seasoned member here than me, but you have my heart and my prayers....all the best I could offer to support you.

    Much love and many hugs to you Don,

    Linda

    large cell neuroendocrine -HELP!

    in NSCLC GROUP

    Posted

    Heather:

    Here's a link to an LCSC thread of a new member that had been diagnosed with LCNEC -- those who responded to him gave many useful links to information....for some reason, my computer is not giving me a specific address to cut and paste here...

    Right now, it's on page 4 in the introduce yourself forum and called "Large Cell Ceuroendocrine" by Greg Drevs (October 2006). RandyW, john, Ry, and many others gave really good info. there.

    Hang in there,

    Linda

    Radiation Completion Effects

    in NSCLC GROUP

    Posted

    Taxotere/carboplatin and just finishing radiation are a double whammy on causing extreme fatigue. The chemo. can be responsible for a general "sick feeling" as well. However, chest pains don't come up as an expected side effect; is your husband still coughing up some blood too as you mentioned in another post?

    It's safest to call the onc. and report this -- better to always err on the side of caution.

    Linda

    Is It My Imagination: The Volume of LC Research Increasing?

    in GENERAL

    Posted

    Randy:

    I was at the U.S. Dept of Health and one other site (drat, the title escapes me since this am...it's a really common one too....I used to have it bookmarked....drat my recent computer crash and I didn't bookmark it today!!!!!) looking for clinical trials.....I found a bunch of Phase I/II clinical trials for LC-specific research, some had enrollments open to other types of cancers.....NSCLC had about 1,300 trial hits and SCLC had just over 600 or so.....some of the drugs in study I had never heard of before too.

    When I find it again (I'm going to be trying to do more research for our fellow member this week coming), I'll mark it so I can report better -- I know you are on top of this sort of thing a lot so you might find it useful at least.

    Edit: I think it was the National Cancer Institute.

    Linda

    Is It My Imagination: The Volume of LC Research Increasing?

    in GENERAL

    Posted

    Got to say that I was pleased to see the sheer numbers of LC-specific research going on while I was doing some research for a fellow member here today: both SCLC and NSCLC...around 2,000 clinical trials for both together (some include other cancers in their accepted participants), plus other reports from studies closed over the last couple of years....I just don't remember falling into so many a year ago when I was thick into my own research for my mom. Is this my imagination or first impression at play, or are we really beginning to make some progress here?

    I hope folks like KatieB will say this is so! I surely don't know what we'd do without the pioneering efforts of Lungevity Foundation and others, including us, who are in the thick of seeing that something like this would be so.

    Looking forward to feedback,

    Linda

    2nd week and all well

    in GENERAL

    Posted

    Glad things are going well for you. Do pace yourself on the fatigue factor...nothing wrong with a nap here and there as your body needs some restful recoup time. Sounds like a smart move to delay going back to work.

    Keep us posted.

    Linda

    After Radiation?

    in CAREGIVER RESOURCE CENTER

    Posted

    I'm so sorry your husband is feeling poorly. He's been through quite an aggressive treatment schedule so far so it's not unusual to feel "whooped" after that -- he will gradually get to feeling better.

    We were told that the effects of radiation last for months after it's completed (i.e. it keeps working on the tumours). Mom found radiation tougher to endure than chemo while she was going for her radiation treatments (to the point she couldn't complete the plan...but there were other issues going on for her too).

    Any change should be reported to the doc. as Ry said. May be nothing, but just in case it's something....ALWAYS report things like the blood, fever, any change in how he feels (trouble swallowing, nausea...anything), to the doctor.

    Linda

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