caregivers chat room

Barbara53 said:

it will be okay
I've been caring for my mother for a year. She was diagnosed with rather advanced OVCA, underwent surgery and chemo at age 78. When you need answers to specific questions, don't hesitate to leave them with the fine women (and men) in the ovarian forum.

Your mother will probably be around for some time to come, but the next few months will be rough. And, although it is good and right for your mother to think in terms of a long remission, you are right in that this cancer is very seldom cured. The good news is that ovarian cancer is s very slow. If the surgeon is able to achieve "optimum debulking" -- removing all visible cancer -- then she has a promising prognosis indeed. That's why with this particular cancer, it's important that the surgery be done by a specialist in ovarian/peritoneal.

There is much to learn, and everyone is different. No matter what, you will be okay. Nothing can take away your mother. You can never lose her, even if she's no longer here on earth.

Hi Amanda
I had Difuse Large B-Cell Lymphoma. But it was not in my lymph system. What started out as a bump below my eye and next to my nose turned into a mass with tenticles that ran through the right side of my face. I have had 4 operations, Chop+rituxin chemo and 25 radiation treatments to my face. And I have been in remission for 7 years now. Now I will tell you how much things can change during treatments and tests.
It took about 5 months to diagnosis my cancer. I had the mass removed and 7 biopsies before the cancer could be identified. The initial thoughts were that I had a 0% chance of living. They would remove body parts until there were no more parts to remove. Three days before a scheduled 12 hour operation to remove half of my face, the 10 day petri dish study came back. I had lymphoma and I went to a 50% chance of survival. The operation was cancelled. I have never forgot what it felt like when I thought I had no chance of living. No chance of seeing my three daughters grow up. I have many side effects from the treatments but I try to make the best out of each day that I have been given.
There is no way you can understand what your mother is going through right now. I can gaurantee you that there are a million thoughts going through her mind at one time. And most parents are pretty protective of their children so it might be hard to get information out of her. My daughters were all supportive but I had one that really stepped up to the plate. She insisted on being at my first chemo treatment. She sat down and read all my chemo books. She knew what I should and should not be eating. She helped keep track of my medications. When I was in pain she did the dishes, laundry, cooking and cleaning. And last month she became a nurse. What could of pulled my family apart pulled it together. Sometimes it comes down to having some control back and taking little steps. Setting small goals to aim for and surrounding yourself with good things and staying away from the stressful bad things. A warm blanket when all your bones and muscles hurt. OHHH and a letter from a loving daughter that lets you know how special you are. I still have letters from my daughters and they are quite special to me. I look forward to seeing your posting here. Blessings Slickwilly

slickwilly said:

Hi Amanda
I had Difuse Large B-Cell Lymphoma. But it was not in my lymph system. What started out as a bump below my eye and next to my nose turned into a mass with tenticles that ran through the right side of my face. I have had 4 operations, Chop+rituxin chemo and 25 radiation treatments to my face. And I have been in remission for 7 years now. Now I will tell you how much things can change during treatments and tests.
It took about 5 months to diagnosis my cancer. I had the mass removed and 7 biopsies before the cancer could be identified. The initial thoughts were that I had a 0% chance of living. They would remove body parts until there were no more parts to remove. Three days before a scheduled 12 hour operation to remove half of my face, the 10 day petri dish study came back. I had lymphoma and I went to a 50% chance of survival. The operation was cancelled. I have never forgot what it felt like when I thought I had no chance of living. No chance of seeing my three daughters grow up. I have many side effects from the treatments but I try to make the best out of each day that I have been given.
There is no way you can understand what your mother is going through right now. I can gaurantee you that there are a million thoughts going through her mind at one time. And most parents are pretty protective of their children so it might be hard to get information out of her. My daughters were all supportive but I had one that really stepped up to the plate. She insisted on being at my first chemo treatment. She sat down and read all my chemo books. She knew what I should and should not be eating. She helped keep track of my medications. When I was in pain she did the dishes, laundry, cooking and cleaning. And last month she became a nurse. What could of pulled my family apart pulled it together. Sometimes it comes down to having some control back and taking little steps. Setting small goals to aim for and surrounding yourself with good things and staying away from the stressful bad things. A warm blanket when all your bones and muscles hurt. OHHH and a letter from a loving daughter that lets you know how special you are. I still have letters from my daughters and they are quite special to me. I look forward to seeing your posting here. Blessings Slickwilly

Thank God the petri dish
Thank God the petri dish study came back in time before the surgery! You are one strong person- I hope my mom has that same fight in her. There are 4 of us "kids" ranging from 26-36 years old all lined up to help my mom out- so the good thing is she will have tons of support and love all around her throughout this process. I can only imagine the rollercoaster ride of emotions that you and your family have been through- I should probably buckle up for my own ride. Thank you for your words of advice and sharing your story with me. Sounds like you have a great support system. It will definitely be a challange to stay positive espcially during this waiting period. I'll be moving back home soon and will be able to help out so there is some comfort in knowing that I will be able to physically be there for her.

Kind Regards,

Amanda

grandmafay said:

Sorry
Hi Amanda, I am very sorry you and your mother are going through this. The waiting is always hard. Not knowing is hard. Once you have all the information, your mom will be able to work with her drs. on a plan of action. At least then you will know that you are fighting the cancer. Then you and your mom will feel less helpless. Being a caregiver has it's own challenges. Waiting for answers, knowing that the decisions are your mom's to make, not knowing how she feels, wondering if you are doing everything you can. Just be there for her. Whatever the outcome of the tests or the surgery, hug her often and tell her you love her. Appreciate the now and celebrate your time together whether it be months or many years to come. I wish you both the best. By the way, if you haven't already been in touch with UC San Francisco's Cancer Center, check it out. They have some good programs for cancer survivors and family members. We only were there for drs. appointments and surgery and live too far away to take advantage of the many offerings I saw advertised. Some sounded very interesting. Fay

Hi fay- thank you for your
Hi fay- thank you for your note. You hit the nail on the head- not knowing is really tough. We've started looking up cancer-fighting foods in an attempt to gain more control. She is actually getting her surgery done at UCSF. The surgeon seems pretty amazing so I at least feel good about that. I'll definitely look into their programs while we are there. At this point, I am sure we are all willing to try just about anything.

Kind Regards,

Amanda

A1pena said:

Hi fay- thank you for your
Hi fay- thank you for your note. You hit the nail on the head- not knowing is really tough. We've started looking up cancer-fighting foods in an attempt to gain more control. She is actually getting her surgery done at UCSF. The surgeon seems pretty amazing so I at least feel good about that. I'll definitely look into their programs while we are there. At this point, I am sure we are all willing to try just about anything.

Kind Regards,

Amanda

UCSF
Glad to hear that you are in the hands (literally) of the UCSF medical people. We were really impressed with my husband's care there. We were at the Mt. Zion Cancer Center on Divisadero. From what I read on various flyers, they also have some integrative medicine programs and one to help you prepare for surgery. They even had live, peaceful music at times. Check out their website which has a lot of helpful information. I've included the link at the bottom. It's also called the UCSF Helen Diller Cancer Center. We were there for three different surgeries, so I spent quite a bit of time hanging out there. They have a good cafeteria and gift shop, too. Fay


link: cancer.ucsf.edu/about/facilities.php

slickwilly said:

Hi Amenda
I agree with Joe completly on the subject of diet and information. Talk to the Oncologist and read all the information you are given by them. Each individual is different and cancer treatments effect us all in different ways. One thing we have not talked about is dignity. Its always an issue during cancer. During operations and testing it seems everyone in the world is looking at us in the worst of conditions. I always felt like every nurse in the state had seen my butt at some point. If your mother is ok with you helping her then try to protect her dignity from visitors. That includes the rest of the family. You should not have to explain why you and your mother need a moment of privacy. But sometimes people just don't get it or understand. I have worked with a bunch of local people and there are always issues with company and sleeping. So we came up the the curtain or light signal. When the curtains are pulled we are sleeping. Or if an outside light is on we are sleeping. Company is great but we also need our sleep so our bodies can rebuild and heal. Best of luck with your move. Slickwilly

Hi There!
Thank you for your notes! I'm making a list of questions to ask the doctor on our next visit which is this Wednesday. Food/supplements are defintely on that list. I wanted to ask, can you feel it spread? As of right now, my mom says she feels fine, is breathing well, doesnt have an upset stomach nothing... would she be able to tell if it was attacking other organs? I am sure speculation is not healthy- but I was just curious if there are any warning signs...

Fay- we are also at the Mt Zion Cancer center on Divisidero! What a small world...I know my mom is open to integrated medicine so those programs sound like a great idea. I took a look at your profile, so sorry for your loss Thoughts, prayers and hugs for you...

Kind Regards,

Amanda

Caregiver Chat room
Hi Kasey,
My wife was diagnosed with lung cancer 3 weeks ago, I am looking for a chat room for cargivers. Has this started?

Thank you

charbannon said:

able to speak to another cancer caregiver
today is Feb. 8,2010 looking for someone to chat with, who is a cancer caregiver to a loved one. my email is charbannon@gmail.com, or if you would rather ,chat on this network.i would really appreciate it.

Hi Char, my husband is in
Hi Char, my husband is in the last week or so of his life. Feeling pretty rocky right now.

Chat room
Hi Kasey,
I am caring for my wife of 36 years. She was diagnosed 10 yeass ago with breast cancer, had a masectomy, chemo, pills afterwards the whole nine yards. She was pronounced Cancer free and graduated. Well after that we thought okay this problem is licked we can go on with our lives. Just 9 months ago she started having problems and after an MRI found out she has mestesatized breast cancer (thus METSsux)that has spread to her brain, spine, knees etc. This one has really knocked us for a loop. She has since retired from her job because she cannot do the physical labor. She putters around in the yard but tires really easy. She had radiation treatments for three months and is now on IV therpy and testesterone pills. She is surviving but both of us walk on egg shells just "waiting for the other shoe to drop". I would love to have a forum to talk and ask questions in as I am really in the dark as to what to expect next. Tahks for letting me vent.

evalencia said:

Are delusion part of the process?
My father has been doing his chimo are receiving good treatment. He was a cigarette smoker for almost 33 years before chimo. Now he is in the hospital for an infection he had but is now beginning to belive there is "critters" that don't let him rest.

I know this is noy normal. Does chimo every go to brain?? Do any drugs relating to chimo have any kind of hullucinagenic properties? What is going on?

chemo brain
Yes evalencia, chemo or other cancer treatment related drugs do have an effect on the brain. Halucinations or vivid nightmares can be side effects, please bring this information to the attention of your father's nurses and doctors. Chemo can affect memory and reaction time, and can even lead to the patient making responses which don't seem appropriate to the conversation at hand. This is known as "chemo-brain", and usually goes away after chemo stops, but sometimes it takes a while. I think you should have gotten more information about chemotherapy from your father's oncologist.

arbrab said:

caregivers chat room
In 2007 march my soul mate passed from lung cancer. I was his soul caregiver. A job that I wouldn't trade for in a million years. I have been in the Chat Room that Joe is talking about and have learned so much from survivors to caregivers old and new. But, we do need a place where it's just caregivers. Where we can talk about what each of us has been through and maybe help each other with the after. I go to the chat room because I still haven't a clue as to what I should be doing with my life now. And there are angels in there that have helped me deal with alot of issues. But, someone else with a life experience that has lost a loved one to cancer or death in general is sometimes a greater help than those who have not experienced this at all. I in fact just lost my first sibling to lung cancer = he was 62. Amd #4 of 11 kids. Also I am dealing with #8 a sister going through chemo and radiation for tongue cancer. Yes, i do have a full plate. It is hard to deal with the stress of just being a caregiver, but the added stress does take it's toll.
I would have to tell my mate everywhere I went in the house or just if I stepped outside to get fresh air. And alot of times wanted to just pull my hair out. So Please lets start a chat room for caregivers. we can still go to the regular chat room if we want.

lost
I just lost my fiance' to lung cancer june 13th of 2010...I am now going through the anger stage. It took my whole life to meet this man and we never got our happily ever after. We had been together would have been 2 years aug 1st. At the 1 year mark he was diagnosed with cancer. It went from the lung to the brain then liver then spine. He was only 54 years old. I miss him so. I was his only caregiver. What now??? What do I do with the rest of my life?????? Help!