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Thank you, both. I think a lot does have to do with the family being around, and if they're not physically nearby, calling her. My brother is in MD but has come up every 2 weeks or so for a day. I have one daughter nearby who pops in for lunch or supper with her grandma. And the other two daughters call her. I'm planning to bring over a pot roast and all the side dishes on Sunday.
Hello sweepea,
I am new to this forum and found your thread, my mom also has this terrible disease PC, and while reading your story, I have found so many similarity with my own experience, with the difference that my mom has been on hospice for the last 5 months.
She was diagnosed with PC feb/2012 (after 2 years of many doctors visits and tests, losing weight and not feeling well), she went with an aggressive chemo treatments for 2 months but did not do well, it made her very sick and the cancer grew despite the treatment and her oncologist suggested hospice, it was a very difficult decision but as of today it was really our only options.
This has been a roller coaster from day one, she has been very strong and has not giving up, when she started hospice she was in bed rest and the nurses told me she was going to last 2 weeks the most, and it has been 5 MONTHS, she got out of bed and walks without walker and she even still makes future plans.
It is amazing what the human spirit is capable of doing, even though I know she is very sick and everyday can be her last, but she stays positive and that gives me strength to keep on. I did hire a lady to live with her, because I decide to leave her in her home, but I needed that help.
I am soo happy your mother is doing well, cherish those moments like you are doing, because tomorrow everything can change.
anagrace
Hello sweepea,
I am new to this forum and found your thread, my mom also has this terrible disease PC, and while reading your story, I have found so many similarity with my own experience, with the difference that my mom has been on hospice for the last 5 months.
She was diagnosed with PC feb/2012 (after 2 years of many doctors visits and tests, losing weight and not feeling well), she went with an aggressive chemo treatments for 2 months but did not do well, it made her very sick and the cancer grew despite the treatment and her oncologist suggested hospice, it was a very difficult decision but as of today it was really our only options.
This has been a roller coaster from day one, she has been very strong and has not giving up, when she started hospice she was in bed rest and the nurses told me she was going to last 2 weeks the most, and it has been 5 MONTHS, she got out of bed and walks without walker and she even still makes future plans.
It is amazing what the human spirit is capable of doing, even though I know she is very sick and everyday can be her last, but she stays positive and that gives me strength to keep on. I did hire a lady to live with her, because I decide to leave her in her home, but I needed that help.
I am soo happy your mother is doing well, cherish those moments like you are doing, because tomorrow everything can change.
anagrace
You have my concerns and prayers as does Sweepea of course. You are right, we do not know what tomorrow holds and Hospice can work wonders. No, they can not save lives, but they can make the winter season easier for everyone. We are facing this right now: my step mom (about like a biological mom) is very near the end of her life: no, not cancer, although she has dealt with it many years ago, she is simply 94 and ready to join my dad. We have brought Hospice in. the last few days, she is more responsive, more comfortable and a little better able to handle what is ahead for her.
Thanks nmnita and Dude111 for your concerns and words of comfort, It is great to vent with people that are going or have been through similar situation, I am so happy I found this forum...
Thanks nmnita and Dude111 for your concerns and words of comfort, It is great to vent with people that are going or have been through similar situation, I am so happy I found this forum...
just telling your story or sharing your feelings can often help ease the pain and give us all a new outlook, even if it is only for a short while.
So sorry I have not been here in a while. I feel like I'm living in a tunnel, or at the bottom of the sea. It is all so overwhelming and it will be hard to update you completely, as more than a month has gone by.
My mom went through 5 chemo treatments. The first couple were once a week, then we changed to every 2 weeks around the end of August. Then we waited 3 weeks for the 5th infusion. During this time, she seemed to do all right during and after chemo. The weird thing is that at the beginning of August the doctor showed us a graph showing her tumor markers way down, which encouraged her. But at the same time, she was weakening from the disease.
Other good things: she loves her physical therapist (PT ended 2 weeks ago). I spoke to the PT yesterday for a while and thanked her for helping my mom work toward and actually reach some amazing goals -- walk with a walker halfway down the hall, then all the way, then down all four halls at her facility, and even up and down a few stairs! The Pt found a better walker for Mom, too, one that had a basket to keep all her crocheting and things and had better wheels.
On Labor Day weekend, she was taken to the ER because she was short of breath. This was a worsening problem. I sat there with her all night while she had an X-Ray and CT scan, EKG, and a Doppler to make sure it wasn't the clot in her lung breaking loose. That was ruled out and nothing was determined, except that it may have been the growing pain from the cancer that was causing her to be unable to draw a deep breath without hurting. The ER experience was very draining and scary.
Shortness of breath got worse. Weakness increased..to make a long story short, she was okay and in good spirits until the Saturday before last, about 10 days ago. At that point, her pain seemed to increase dramatically and she had several nights where she was in great pain despite increases in the phentanyl patches and oxycodone and nurses coming to her at night with extra pills. Every day I went over for lunch and/or after work to see her looking more drawn, more worried, miserable. She could hardly eat.
During this time I wasn't doing nothing, I was setting up hospice. We started hospice on Friday, and so far they've been wonderful. Mom is on much more pain med, they started Roxanyl (sp?) for breakthrough pain, and she's finally comfortable for the past 5 days or so. We also have a very caring support group in hospice, and it's eased my mind a lot.
But all I do is cry. I just bought her all these nice new fall clothes, including a beautiful fall jacket that she loves. She got to wear it once last Thursday. Although she was in great pain and hardly able to walk, breathe, eat or talk, she insisted I take her to see the lighthouse she had been wanting to go to. I would have just brought her outside to sit, but she wanted to go...we drove over and sat in the car in the parking lot, looking at the lighthouse, the water and the sky. It was so sad, but a good moment. It was a kind of turning point. This was on the day that we were supposed to see the oncologist for an update, but of course I had canceled that. We already knew the update.
On the way back from the lighthouse, she told me she was scared. She didn't want to go to the hospital, mostly. I assured her she wouldn't. I also said, Mom, I know it's scary, but know that I am always here, and she said, I know, sweetheart. That was our last trip out, our last time outside at all.
Now she is doped up, only alert at intervals, sitting in her comfortable chair by the TV but unable to watch, to listen to music, or anything. Not bedridden yet. Yesterday she was shaking her head, saying, I don't know, I don't know...I think she is giving up hope.
We try to be there all the time, mostly me but my daughter who lives nearby, too, and my brother and his wife when they come up from MD. Hospice and the nurses and doctor are trying to balance her pain meds so she can be free from pain but hopefully a little more alert than she is now. Right now she cannot do anything she loves. I go over at lunch and spoonfeed her a few spoonfuls of ice cream (makes her smile) or pureed soup. She is having trouble swallowing and can't eat something like a cracker or anything too hard or chewy. It is a great effort to eat at all.
The other day I was sticking swabs in cranberry juice, and she was sucking the juice out. I can't believe I'm doing this with my mother.
Sorry this is so long. I left out many, many details, but I will try to fill in. I guess mostly I'm glad she is in a place where she is getting good care, both from staff and hospice. She is popular there and has people looking in on her all day long.
I wish good health to everyone on this forum and send prayers to anyone watching a family member go through this horror of a disease.
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