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Posted by Rhonda on June 29, 2000 at 07:57:50:

In Reply to: Re: Just a little update and a lot of venting. posted by Maggie on June 29, 2000 at 01:52:28:

Maggie, My Mother was in the hospice hospital unit, so she got to see the hospice Dr. everyday. I don't know how it works for patients who are at home, but can you talk to the Dr. directly or only through the nurses. I would go see this Dr. personally and demand decent pain control for your Mom or change doctors. I thank God for the Onc. Dr.s and nurses at UVA. Pain control was very important to them. My Mother was told to call if she was not comfortable and they would help her. Maggie you and your Mom are in my prayers.

: : : I have posted to this board before about my mother who was dx with SCLC on April 5, 2000 and opted for no treatment. Mom has been having to take more and more pain meds in the last couple of weeks. She sleeps most of the time and gets sick and vomits every day. I just wish she didn't have to go through this. One of the reasons she opted not to take treatments was because she didn't want to spend her remaining days being sick. Mom is 74 years old and said she has lived a full life and is not afraid to die. But why, if she chose not to have the chemo because she didn't want to have the sickness, is she so sick anyway? It is so hard to watch her dying this way. Her quaility of life is non exsistant. She is on pain patches, taking Oxycontin every twelve hours, and has to take the breakthrough pain meds several times a day. The Hospice nurse says she will talk to the doctor and he will probalby up her patch to two at a time and still have her on the Oxycontin every tweleve hours. Isn't this a lot of pain meds? It took us nearly 3 weeks of practically begging the Hospice to get her something for the vomitting. Oh they had gotten her some pills for it, but they didn't work, so they told me to give them to her rectally. Well that didn't work either. Finally I told her nurse something had to be done before she dehydrates. So finally they got her something else. Some times I get real discouraged with the way Hospice is handling mom's case. They claim to have full family support, but where is it? Just call they say, but when do I have time for that? I guess I am just worn out and needing to gripe. I get little or no help from my sisters either. They just don't seem to have any more time to help than Hospice does. The only good thing about Hospice that I can see is they pay for all this high priced medicine that doesn't work. Forgive my venting, I just needed to let off a little steam. Maggie

: : Hi Maggie,
: : I have been thinking of your mom and you. Good to hear from you and read your post.Maggie you can get morphine meds in a pill form, and yes your mom needs a brain scan or MRI.Also Maggie there are good meds out there for vomiting and nausea.Maggie when or if the cancer spreads to the brain, there are so many unexpected things that can happen to your mom.You need someone with you at all times. You do not need to be alone, I know what can happen Maggie, because my sister also died of lung cancer and the first place it goes to is the brain.Hospice was not called in for my sister until a few days before she died. Your mom needs an IV drip to keep her from getting dehydrated.Call your moms Dr. and tell him/her just what you think your mom needs, demand it, thats the only way they will listen. Maggie my heart goes out to you and your mom. I've been there. My prayers are with you and your family.>>> Ruth

: Hi Ruth,
: You and the others say we need to talk to mom's onc. Well I don't know if any of you know this or not and maybe this is just an isolated case, but mom has only seen the onc one time. And that was back when she first got put on the patch and connected up with Hospice. I have never heard of some one like mom who never gets to see the doctor in charge of her meds. Is this normal. We have also been hearing that someone is trying to get the onc fired because he was overheard saying that he just hates patient who are with Hospice. No one seems to think, other than mom and myself, that seeing the onc is nessesary. Is this because she has chosen not to take treatments or what. Her pain is nearly out of control and all they say is for her to take twice the amount of the breakthrough med. I told her nurse just yesterday that it made no sense that when she first went on the patch that he was wanting to eliminate the breakthrough meds and now he wants to double them??rather that give her a larger dose of the patch. I came right out and told mom's nurse that that was what mom wanted. All she said was "Well he will just tell me again to have her double the breakthrough meds, so there is no need to call again." We are so angry that I am ready to just take her to her regular doctor and have her give the larger dose. This may get her "kicked off" Hospice, but if they are just going to continue letting her suffer this pain, I don't really care. Thanks to every one for your advice. I have been worried that the cancer has indeed spread to her brain. She has headaches alot as well as the vomiting every day. Her food intake is about 1/2 cup total for the day. She does drink alot of water and some coffee however. Well thanks again and I will tell mom what all of you have said and see how it goes from there. She is becoming short with me when I try to tell her we need to do something else. But I know alot of it is the fact that mom was raised believing that doctors were gods. I don't get a lot of time on here since staying with mom but I do check my mail and this board when I get a day at home.


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