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Old 10-03-2010, 11:22 AM   #1
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Join Date: Oct 2010
Location: temecula, ca USA
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normtippy HB User
Smile Caregivers support group

Hi,
I live near Temecula California and I am looking for a Caregiver Support Group OR a Cancer Support group to go to. I would like to go to a meeting of people where they have discussions. My husband has stage 4 pancreatic cancer and I am his caregiver, but sometimes I feel overwhelmed and I would like to talk to other people in my situation. Can someone please let me know of such a place........Thanks..........

Last edited by normtippy; 10-05-2010 at 11:45 AM.

 
Old 10-28-2010, 05:08 AM   #2
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dixiemidwife HB User
Re: Caregivers support group

I live in Atlanta Georgia and share your desire to find a support group, specifically Pancreatic Canter survivors/caregivers. Unfortunately, there is only one person-person PC support group in Atlanta which meets once a month. Because of the location, I am often unable to attend--what a shame because I found great validation and support when I could attend. My husband also has stage 4 PC and is not doing well. Today we had a permanent port inserted to relieve his ascities-which I hope will give him some comfort and relief from symptoms. Recently we decided to stop chemo because it was just too dibilitating. To watch Carter (husband of 2 years) suffer is almost too much for me to bear. I too have taken a leave of absence from work to care for him. I swear--sometimes I still can't believe this is really happening. Being a caregiver is very very difficult--especially because this horrid disease is so aggressive and devistating. I just wanted to respond and hope you are able to find what you need--deserve to help cope with this nightmare of pancreatic cancer. I find myself struggling with anger, anxiety, fear and grief all at the same time. Tell me about your experience, is your husband currently in treatment? Do you have family/friends near to help you?

 
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Old 10-28-2010, 02:41 PM   #3
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normtippy HB User
Re: Caregivers support group

Hello,

Thanks for your reply. I'm so sorry to hear about your husband. My husband was diagnosed in August 2008. He has been in a clinical trial ever since for PC. I'm not sure if it's the trial drug or the chemo that's dragging him down so badly. He just got out of the hospital for the 4th time. The drugs just take there toll on him. He has to be hydrated and this time had 2 blood transfusions. He passed out on the bathroom floor with the door closed. Luckily, I called my son to come help me and we got him far enough away from the door to get it open. He had a nice gash on the back of his head. I quickly called the paramedics. He fell in the bathroom again last night as his legs just don't have much strength left in them. He can't get up out of the bed now, off the couch or out of the chair without help. He does have a walker to use. The cancer has remained the same as I'm sure the trial drug has helped with that, but we don't know the side effects from it. My husband also is a diabetic which complicates things and his kidney's only work 50%. We've been married almost 25 years, so I feel just like you with mixed emotions of every kind. I have not found any support out here whatsoever which is a real shame as I'm sure there are many others in our same position, so I've been buying books to get me through. Thank goodness my son lives only 2 miles away and he can be here within minutes to help me. He's the only means of support I have, but he also has his own family to worry about, so I'm basically on my own pretty much of the time.

 
Old 10-28-2010, 06:12 PM   #4
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dixiemidwife HB User
Re: Caregivers support group

Wow...I can relate--yes--the chemo just big time zapps everything! Carter also needed transfusions--felt a little better for a few days--but not well enough to do anything--then back to feeling weak and fragile. He was doing chemo every other week--but we recently decided to stop. We also have walker --Carter was a little resistent at first--but he also fell and just scared the you know what out of me!

Do you have home nurses who come to your house? That has been very helpful to me--they bring IV fluids, or whatever I need so I can give at home--saves a drive to the hospital for several hours. They also supply the TPN (total pariental nurtition). Usually they come once a week to check in. I feel better just to know they are available.

Carter has a bile stent--but his bilirubin yesterday was 17. My yellow fellow! -- Carter ascities has become very evident--already had 2 paracentesis. I think this is close to end stage--but can't get a clear answer from oncologist. My guess is that we only have weeks left. I swear---I just can't believe this is happening--how your life can change in just a moment.

Did you husband have the whipple surgery? Have you taken a leave from work? I am glad your son lives close to you--but I would suggest talking to your doctor about some home visiting nurse agency ( if you have not already discussed) Ask for what you need.

I feel sometimes like I am drowning

I am glad we connected. Hope your night is easy and restful.

 
Old 10-28-2010, 08:22 PM   #5
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normtippy HB User
Re: Caregivers support group

Hi,

my husband (milt) could not have the whipple procedure. When they got in there the cancer had taken over his major arteries, so they removed his gall bladder and closed him back up. At that time they said 6 months to 2 years and so far he's made it passed the 2 year mark. Is the nurse coming in free? Sounds like your husband is bed ridden which milt is still ambulatory, but getting worse since his fall yesterday. I would like him to stop the treatments, but i can't make that decision for him unless i have to. I've been a house wife for several years now and he can't drive, so he's totally dependent on me. He does have a daughter but she lives almost 2 hours away, so no help there. It looks like i might be close to getting a hospital bed if he can't get up by himself. In the clinical trial it's 3 weeks on treatment and one off, but i've cut out the middle treatment as it is just chemo without the study drug and where we have to go is 70 miles one way. I too feel like i'm drowning at times and overwhelmed and i just want to run away, but i know i can't. I'm at a loss for words about your husband. I so wish things would get better for him.

 
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