thecdr
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Oh Richard, what an absolutely beautiful, poignant post, it brought me to tears! May you find comfort and solace in the days to come as you remember who your father was and not what the disease did to him. He is in a far far better place than he has been and a far far better rest than he has ever gone to
Barb
The submarine sounds wonderful! well, for sure you have to do a Luau, I think Paradise Cove is the most popular, suck up those mai tais baby! If you get a change, fly over to one of the other islands, molakai is both spectacular and awe inspiring, read up on Father Damian. And of course, if you can swim with dolphins, healing powers! I googled swimming with dolphins in hawaii and came up with several sites, I have heard of Dolphin Quest
there are no words that will comfort, but I will share with you the promise that my son and I make to each other every night, because it applies to you and your father. No matter when or where or what, you will always be in his heart as he will be in yours. Holding you in my heart–
Barb
Hi Jeff
I agree with you, if we as patients can’t take charge of our quality of life then what is the point. There is this line from Steel Magnolias “I’d rather have six months of wonderful than a lifetime of nothing special.” Well, I’d rather have six months of wonderful than 12 months of misery.
Pulmonary emboli are blood clots in the lungs, the main symptom would be shortness of breath, congestion doesn’t usually enter into it, that being said, if you are so short of breath you can’t take deep breaths than that could lead to the congestion. The only real way of telling is with a scan, do your scans include the lungs yet?
If you have the opportunity to swim with dolphins in hawaii, DO IT! It is so worth the money (it was about $150) and one of the most magical experiences of my life.
Have a great time in Hawaii, have you ever been? What island(s) are you going to?Happy New Year!
Barb
JeffG wrote:Hi Barb, I have made the same decision about Taxotere. I’ll wait until next scans to see if it was doing any good or not. I know the Oncologist will want to do another round before scans but My daughter made reservations for a week in Hawaii 2nd week of March for our Anniversary. ( A Christmas gift) Who wants to go to Hawaii feeling like crap. Also if Taxotere is doing any good it will do just as good when I return as far as I’m concerned. With pulmonary emboli, is that like coughing up a lot of congestion? I’m asking as I was coughing up flem alot this round of chemo and then one time it looked like a good clump of dark red blood. Just like a blood clot. My coughing seem to have gone away since then. Hey maybe I can swim with the Dolphins as well. It sounds really exciting.The Best New Year To You!
Jeff G.I have come to the decision that I no longer want to take Tarceva. I know that the stats show an increase in the length of live, but the numbers are too small for me to make a difference and my quality of life is more important than the length. I am so tired of feeling like crap. So, when my prescription ran out my doctor told me to hold off refilling it until after my next scan in a week. I have been off since Christmas eve and I feel SO much better! I finally have energy and an appetite and am actually enjoying life instead of laying curled up on the couch half the time. I still need the oxygen as I am still short of breath from the pulmonary emboli, but I will take that over how I had been feeling any day!
Richard,
I will be faced with the same situation for myself at some point. I don’t know what the catalyst will be for deciding to go for hospice. But, and maybe it’s because I am such a control freak, I have done a few things in preparation. I have made all the arrangements for my funeral including paying for it out of a small life insurance policy I took out years ago specifically for that purpose. I also did the research on the different hospices where I live and what is available. If at all possible I want to be at home but I will have to see how things pan out. Remember you can receive hospice services without actually residing in hospice. When your dad and his doctor decide that active treatment is no longer an option and palliative care is what he should be receiving, then he should look into hospice services. Then, when and if he comes to the point where he can no longer get the care he needs at home, whether by family members or home health aides, then that is the time to look into moving into a hospice residence. I urge you to call the hospice agency (ies) where you live and discuss what options your dad may have. Most insurance companies include hospice in their coverage including Medicare.
I wish you luck in your decision making and hope that you and your family get the comfort from Hospice I have seen so many get.
Barb
Missing U
Thank you for such a beautiful heartfelt post, it brought tears to my eyes and made my heart swell. How lucky your father was to have you! Remember, he will ALWAYS be in your heart and you will ALWAYS be in his. How wonderful to have another guardian angel watching out for you!
JeffG wrote:Cdr …Please don’t misunderstand me as I love reading all the personal experiences. I’m just trying to say once a person is introduced, Further ongoing discussions should go in the experience section forum so as not to post over new introductions forum and have someone new seeking help get buried with no response from anyone. Maybe it’s my imagination but I see it happening quite a bit that I find unanswered introductions being posted over because continuing experience postings that should be going to the experience forum. Your probally right it is the nature of the beast. Maybe the new site will allieviate some of this. It just makes me feel bad that someone is intoducing themselves and then someone post right over them before they get an answer or advice.Jeff G.absolutely agree, my point was that one of your biggest challenges as a moderator is to keep people on topic without p***ing them off or hurting feelings. Do you have the power to move threads to other areas?
Lisa Ann wrote:Jeff,I would have to think that you are talking specifically about my thread. I know it has gotten long and has alot of personal stories, but that is just what came naturally. I had many members feel compelled to follow my story, and I meant no harm. It was also a way for them to talk about thier experiences and grieving as well.
I will no longer post unless I have a medical question, or need help with some hospice decisions, my e-mail is available for those who want an update or feel the need to talk.
Lisa
LISA!!! PLEASE continue posting!!! PLEASE!! Just continue your thread in the Experiences section as Jeff suggested. As a moderator of several types of groups one of the biggest challenges is to keep on topic. But that should not stop anyone from posting, that defeats the whole purpose. So please, keep your posts coming, just under the Experiences thread.
Jeff, I think it’s the nature of the beast :
I personally like the personal experiences, I get something out of all of them, and if they get too long winded or don’t apply to me I just move on. But that’s just meall I can say is that you are all so beautiful and your parents are so lucky to have you in your lives. As a patient I can tell you that knowing that my family felt the same way you all do would be the most wonderful and comforting thing in the world. I know this is hard for you as it is on my family, but you do make a difference.
fairydrop wrote:Well we went to the SSI appt. and since we have a home that’s paid for, we’re not eligable. Wonderful California says we can sell our home and pay our bills.That’s ok, if it comes down to it we can take a equity line of credit to pay the bills.
We still have about 3,000 left in our savings account and I am getting disability so we’ll be ok.Thanks for all your advice,
Charleneisn’t SSI different from SS Disability? I don’t think one has anything to do with the other. SSI is income based, Social Security Disability is not. If you have been working your adult life and contributing to Social Security, then you are entitled to those benefits, as well as surviving spouse and/or children
From the Social Security Administration Website (http://www.ssa.gov)
Quote:The Social Security disability insurance program pays benefits to you and certain family members if you worked long enough and paid Social Security taxes.
Your adult child also may qualify for benefits on your earnings record if he or she has a disability that started before age 22.Quote:The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.SSI benefits also are payable to people 65 and older without disabilities who meet the financial limits.
Lost, I urge you to seek more opinions, seek out Sloane Kettering, Anderson, Mayo, all the big cancer centers, including Cancer Treatment Center. I have a hard time understanding why this would be inoperable with a single tumor and no other involvement. I mean, this sounds like one of those rare times where they actually found it in an early stage, many of us, myself included, weren’t discovered until well into Stage IV. You might want to research how much experience your oncologists have with this type of cancer. Have they done any biopsies? what other CTs? Keep pushing them, it is your dad, do not give up!
((((LISA)))) God bless you for being such a good daughter and take comfort in the fact that your dad’s last days/hours/minutes with you are all the more comforting with you there. Know too that your grief is a sign of how much you love your dad. As far as your siblings, try to clear your slate, you will feel better for it. How they are behaving and reacting is their problem to have and to fix, and if they don’t they will be the ones who have to live with the guilt. Get over the anger, it’s not worth it, trust me. Anger wastes too much energy and you need that energy for your dad and for you. Dedicate yourself to making sure that you, your dad and your mom have the most wonderful time together possible. Talk about old times, even if he seems to have “checked out”, he will still hear you. Count every minute you have with each other as a gift and a blessing.
Fill that emptiness with the good memories, trust me, your heart will be full. As my son and I constantly tell each other, we will ALWAYS be in each other’s hearts no matter what. It doesn’t matter if your 10 or 30 or 80.
just remember that although we may not see our loved ones cry they may very well be doing it in private. Everyone deals with grief in their own way, whether they are the patient, the caregiver or the family or whoever. My parents haven’t cried in front of me, and in many ways I am glad, because the caretaker/nurse in me would want to take care of them and I’M the patient! My dad deals with his grief through physical work, so my garage is clean and I have 2 new ceiling fans, and he turns 80 next month!
I very seldom cry in front of people, I have always been that way, I am too much a control freak and to me crying is a sign of losing control. This may be the case with your dad. When you are suffering this disease we NEED to have control, because that is all we have. So any control, even of our emotion, we will hold on to. That doesn’t mean that if you pulled up next to me at a stop sign you won’t see me sobbing like a baby!
