gerbil runner
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Posts posted by gerbil runner
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The real tragedy here, IMHO, is that the risks are not fully explained by so many doctors. For some patients, the decision is 99.9% chance of death soon by disease or 50% chance of incapacitaion/early death due to WBR. Many patients would make the same treatment decision, but with a more appropriate frame of mind. And it seems WBR should be a treatment of last resort.
My mother turned down PCI due to the risks. She is now dying of brain mets. But if she had had PCI, we all strongly believe the infection she suffered last December would have killed her due to a weakened body.
Without a crystal ball, it is impossible to know which option is best. But everyone deserves to know the risks involved, even if WBR is the only option available. Ignorance is not bliss.
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Sounds like a dr. change might be needed.
Or (assuming this is what Ron wants) just talk bluntly to the dr. "Treatment MAY kill, but the disease will CERATINLY kill. I'll go with my boots on, thank you. Or maybe I'll get lucky and the cancer will die first."
I firmly believe that a patient who has the pertinent information is the only one with the right to decide. And it doesn't matter if the decision is no treatment, every chemo available, or travelling for snake oil.
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Three years
in GRIEF
Lillian, you are stronger than you think.
Despite the pain you feel now, you "have" Johnny in your mind and your memory. And I believe we are eternal spiritual beings. If you can accept that you are an eternal spiritual being, and so is Johnny, then you can hold on to the knowledge that your spirits will reunite, never to be separated again. And in the vastness of eternity, your separation now will seem very small.
Think of your time here on earth as being a missionary to those who need love and guidance during difficult days as physical beings on earth. Other people need you, and that's why you must wait to rejoin your true love.
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Sounds like what you have is a really bad combination...stepdad and brother who have problems with emotions, and decadron which is wreaking havoc with your mom's emotions.
Go to your mom. Put her first. Think of what you might think of these times 10 years from now. Will you think "Why on earth did I disrupt my kids' plans" or "I'm glad I did what I could, even if it wasn't perfect". Explain to your kids that love means giving first to those who need the most. Could they come with you (even if they only stay part of the time) to make a special day with Grandma? Could you bring your mom to your house to decorate the tree? You can still hope for many years with your mom, but consider "What if this is her last Christmas?" Maybe you could give your kids the "gift" of a late night up to do your tree, after you spend the day with your mom.
You can't "fix" the problems your stepdad and brother have with dealing with your mom's illness. You can't change how medication, illness and fear affect your mom. But you CAN try to make the best day possible for your mom, and in the end, it may be enough for you both.
I know it's tough. My mother spent the last two Christmases in the hospital (once for a bad chemo reaction, once for an infection which nearly killed her). Now, she will probably not live to see Christmas. So my dad, my family and I have to do the best we can to love Mom, include her in our Christmas, and leave ourselves a way to be able to celebrate next year without feeling we should have done something differently.
Prayers for you all.
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BWHA HA HA HA!!! Love it!
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One of the few I could not "see it coming". Love it!
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When it comes to deciding between aggressive treatment and palliative treatment, there is NO right or wrong decision. There is only the PATIENT'S decision.
Wishing you strength and peace (and duct tape for flapping mouths).
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Visions of 2 x 4's are dancing in my head
.Anger can be a major component of depression. Maybe (from a safe distance) you could suggest to you SF that he should see his dr. so he can better cope with the situation. Explain that his anger is making it hard for your mother to take care of herself because it's so stressful for her.
Not excusing his behavior at all. Like I said, my first thought was to adjust his attitude with lumber.
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I know I'm late in this, but wanted to share this one...
My grandmother was diagnosed with CHF around 1980. Couldn't cross the room without panting. Retired on full disability. Got in touch with a new dr. who straightened out her meds and diet.
She died 20 years later of Alzheimer's. CHF was no factor in her health in all that time. Just minor medication and watchfulness. Take courage.
You can do this, so relax. Just make sure the potty is always in reach
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Hi, Karen.
My mom was dx with 3 brain mets - the largest 2 were about the size of a ping-pong ball - in early March. She had WBR, which eliminated the symptoms, survived near-fatal anemia, and had gamma knife in October for regrowth.
She is now nearing the end of her journey. Hospice nurses feel she will not see Christmas. However, that's 9 months from dx with HUGE brain mets.
You really can't know how long your husband will have. It could be a year or more. I read one account of a lady surviving 15 YEARS after dx with brain mets.
My advice? Do the WBR and try to solve your "end-of-life" questions (will, durable power of attorney, etc). Then forget it. Live each day for the joy of the day. Do the things you really want to do. Eat dessert first. Be frivolous. Laugh at everything. That way, even if your husband gets another 15 years, you'll know you made the most of this uncertain time.
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I'm so sorry to hear Brian is not getting better.
Search for hospice online in your area. Different organizations have different options. The one we are using sends a cna every day, and Mom isn't even on their hospice program! They have a home care program for people who are seriously ill but aren't ready for hospice. It's been a godsend.
Prayers for you both.
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Thank you all so much for your well-wishes and prayers. It means more to my dad and me than you can know.
The major reason I have not been posting on the situation with my mother is because there has been a major happening, very beautiful yet personal. I did not feel I had the right to share this story before. Now, however, my mother has been able to share enough for me to feel comfortable with telling the story.
After my mother had gotten over the worst of the anemia, I came to visit one day. I brought Kyle, my oldest son, to have a trumpet lesson with my dad. Mom and I were alone in her room. That day in May, she told me she had given up a baby boy for adoption when she was 16 years old. This son had found her after 4 years of searching.
So I learned that I have a brother, Patrick, who lives in Florida. What a surprise for an only child!
Since that time, Patrick has visited twice. My mother has reunited with the baby she gave up for adoption, and the two grandchildren (including her only grand-daughter!) whom she had never known. Patrick and his wife, Gigi, have visited us, given back the gift of music to my mother, and become a real part of the family. As an only child, to me this is a gift beyond measure.
My mother's parents (especially her mother) would never have been able to see Pat and his family as part of OUR family. And even my mother said she's not sure if she would have had the guts to have a relationship with him had she not been so ill.
Pat and his family are very grateful to have met his mother. I am so happy to know I have a big brother. Maybe we didn't get the miracule cure we were hoping for, but Bellringer, my father and I have been very blessed.
December 10th is my parents' 40th wedding aniversary. Maybe she will be with us, maybe not. At any rate, we will all know that we have fought the good fight, and bellringer will have earned her place in heaven.
Thank you for your prayers. I pray for you as well.
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Hi, everyone.
Haven't written lately because things have been busy and sad. Mom had gamma knife on October 19th for recurrent brain mets. She had gotten much weaker before the procedure, so much so that we took her in to see the onc. one week before. She was a little dehydrated, but otherwise blood work was normal.
After a very very long day with the gamma knife, Mom stayed overnight in the hospital. After she came home, we all waited for her to improve. But gradually, she got weaker and weaker. It's obvious now that the disease has gotten farther in her brain than the gamma knife could help.
Mom is bedridden, with a catheter. Blood work is all normal. She has to be fed, as she is too shaky to feed herself. Mom can't even turn over without help. She sleeps a lot, and doesn't say much. She will respond when spoken to, and still has a sense of humor, but speaking is a real effort.
She is not in any pain. We have had assistance from Home and Hospice daily under the palliative care program, and tomorrow we will be changing her to the regular hospice program. Dad is coping as best he can. We give Mom lots of company, and whatever she wants to eat - including baked stuffed lobster.
It's a sad time for us, but we are so very grateful for the almost 2 years Mom has had since diagnosis. I am also grateful for the companionship of this site.
Saying prayers for us all,
Jen
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Am I the only sick person who cut up the giraffe before putting it in the fridge?
Must confess - I cut up the elephant, too, although I did remove the giraffe.
And, of course, neither the elephant nor the giraffe could attend the meeting after being cut up.
I did remember the crocs were at the meeting.
So did I get a one, two, or three?
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Her brain mets may be causing the dizzyness. Gamma knife could possibly help, if she's a candidate. Since it's a one-day procedure with low risk, she may want it just for quality of life.
Also, is her blood pressure low? That can cause dizzyness.
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Mom (bellringer) was supposed to have a brain MRI and CT scan today. But she was sick - throwing up and just plain lousy. So the scans are rescheduled for next Thursday and a week from Monday.
Dad and I are very worried about her. She has very little appetite, gets nauseous a lot, and has some abdominal pain. I wish she had felt able to go for at least one of the scans today, but...
It's going to be hard waiting.
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Scary. Good thing you advocate for your mom. Hope she feels better soon.
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My mom (bellringer) is having a CAT scan and brain MRI this Friday. It's going to be a very long day for her, and we are anxious about the scans. She's a little stronger, but still spends a lot of time in bed. Nausea continues to be a problem, too. She takes compazine when she goes out (riding in the car is tough for her), but some days she just can't keep her food down. Any "spare" prayers would be welcome.
Also, my 80-year-old aunt, recently diagnosed with sclc, is undergoing her second round of chemo. She has a met to the liver, so it's extensive. We're praying she gets a good chemo response with little ill effects (she has emphysema).
Thanks very much. There's been some good news lately, so I'm hoping I'll get to add to it!
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I'm so sorry. May you be surrounded by warm, caring people in the difficult days ahead.
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Feeling helpless and that nothing is within his control is really hard to deal with. Maybe it would help to ask your FIL what he thinks would make him feel better. Maybe talking to his dr. about seeing a physical therapist would help. If he has a list of exercises to focus on to help him get stronger, maybe he would feel more hopeful. Try to turn the focus from what he is going through to how he can make it through more easily. It sounds like being dependent and out of control is his biggest concern.
Your MIL needs encouragement, too. Remind her that if she wants to be a good caretaker, she has to take care of herself. Hovering over him 24/7 won't do either of them any good. When the guilt trip comes, she should practice saying "I know you can do it. You're stronger than you give yourself credit for."
Don't give "positive mental attitude" more than its due, either. Your FIL does not need to be a happy smiling cherub to get better. Just help him focus negative feelings on the disease itself rather than the imperfections of the people trying to help him.
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Just remember - with mobile kids , silence is a Bad Thing
. As in "Oooo, looky what I found...if I'm real quiet, I'll get to play with it longer..."Riotous laughter is a close second.
Don't forget to put drawer locks on her dresser BEFORE she pulls out the drawers for climbing.
Keep the camera handy, and enjoy!
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Fay, first of all please know that I wish you a speedy recovery and great treatment to keep you strong.
But I hope this gives you a grin - when I saw you post, I thought you had named your tumor "Bill", and was going to comment on my approval of name choice - I have an ex-husband by that name...
I'm still working on my Christian forgiving skills
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looking for input
in CAREGIVER RESOURCE CENTER
Posted
Maybe the right thing to do is whatever you would do if cancer weren't in the picture.
We all want to "take care" of those who are ill, and not stress them, but sometimes (especially if it's a mom) it hurts them more to feel we treat them differently. Believing in one's strength and normalcy can be just as important as stess levels.
If your loved one feels you made the wrong choice, apologize and move on. We are all just doing the best we can.