One patient with glioblastoma still alive nine years later
by obbison on Wed Sep 24, 2008 12:00 AM
by Mari777 on Wed Sep 24, 2008 12:00 AM
On 9/24/2008 obbison wrote:my best friend has just been told that there is no furthur treatment left for her and she has just been put under the wing of hospice care. I am friend..this is hard enough trying to find the best way to help her through this but I need to have some direct answers on how this is going to go...what is she going to go through....once she is at this stage is there an approx amount of time that she has left...even ball park...how will the final symptoms show themselves and what will they be??? With this type of cancer what is the final cause of losing her....do the theystarve to death I need to hear from someone that will bluntly answer these questions and not candy coat them..I am try ing to toughen up for her but I need to know whats ahead....what will give her the greatest comfort...physically I mean...I think i know how to comfort her in all the other emotional ways...we have been friends for 50 years....she pulled my pigtails in kindergarten and we have been friends ever sense....please help me help her and know what to expect.....Please help me
Hi, I know what are going through because my mother is in the same condition as your friend. She was fighting with stage 4 colon cancer for the last 6 years. Four months ago they stopped her chemo because of the metastases in her brain.Now she has is in her liver, lung and the brain. They said it has grown all over the liver. Two weeks ago they told us there is no more cure for her and they don't know how long it will take. May be a week or a month! I hate the doctors who tell their patients they are going to die because they are so ignorant to find a cure for cancer! They are not God! Unfortunately they underestimate the power of mind. Don't they understand that this way patients go on automatic self destroy! Just think if one day you wake up and every one tells you how aweful you look! You will feel that way after hearing it from the third person! Doctord are not supposed to give false hope?! Are they afraid that the patient would die and sue them in the other world! Of couse they could inform the family but there is no reason for telling the patient directly!!!
She is in bed sleeping mostly. Sometimes we think that is the end because she is very weak. I hate the hospice care! It seems they are just waiting for her to die!! They say their job is only to comfort her! They doubled her morphine patch 50mg and they said it's ok to take hydromorphine every 4 hours. She can't talk or eat because of these medications. I cut back her patch to 1/2 dose and she was still ok and no complaint about the pain. Any way they told us all organs gradually will shut down and she will not be able to eat any more and it seems that her kidney also is slowing down. Don't force her to eat! Some days she is like that and other days a little bit better and more positive. Watch her and make sure that the medications are all ok because sometimes your friend could be confused about the answers!
Make sure she uses her oxygen all the time. It is good for her. Show her your love and stay close to her. Some times my mother says she wants the pain and her life to finish and wants more morphine to sleep for ever. Don't let her suffer because of the pain. Make sure she is relaxed. I tell my mother to ask God for one more year. This way she has hope and wants to live. Don't let her kill herself mentally!
Keep in touch and stay strong and positive. We have to be for them too!
Just think that death is not the end!
by obbison on Fri Sep 26, 2008 12:00 AM
Thank you for your time in responding this message..I guess I have mixed feelings about the right way to comfort my friend....I am normally one
to hold on to all hope but yet it is each individuals choice on how they want to approach this. for her, she has told me it is almost a sense of relief for her to accept this final prognosis...it allows her to stop trying to be fighting so hard and staying positive, etc...I have seen the xrays and I see my friend daily and I believe her time has come. Since the acceptance of this on both of our parts, it has allowed us to have more intimate conversations about
life and death and what we have done with our lives...laugh a little harder together because we are no longer haning on to that illogical thread of hope. She seems better able to just concentrate on her days...enjoying people..seeing all the people she loves and telling them exactly how she feels about her love for them etc....In a way it is a sense of freedom and empowerment. I do understand this because I was diagnosed with breast cancer when I was 27 and now have congestive heart failure as a result of the over exposure to radiation.....but you know....you can either live ever
day with that hanging over your head every day and your days filled with thoughts of dying...or let it go and spending each day living and that is what we are going to try to do....I just wish I understood better what will happen and how much time we have...I am trying to catch her doctor but he is a busy man.....
so please anyone that has dealt with esophageal cancer and helping your loved one go through this process...please write me..I will appreciate and message....
Thank you and take care everyone
by girlsx5 on Wed Oct 08, 2008 12:00 AM
I am so sorry to read that your friend is reaching her final journey. I lost my Dad last July to ec and I truly believe he starved to death in the end as he was unable to take any fluids/solids. He had 3 days at the end where he started having breathing problems that where like panic attacks which he was given a little sedation to relax but apart from that he was awake until a few hours before. He did become very confused towards the end and quite abrupt sometimes and then other times would be normal.
I hope your friend has a peaceful ending.
by obbison on Mon Oct 13, 2008 12:00 AM
On 10/8/2008 girlsx5 wrote:I am so sorry to read that your friend is reaching her final journey. I lost my Dad last July to ec and I truly believe he starved to death in the end as he was unable to take any fluids/solids. He had 3 days at the end where he started having breathing problems that where like panic attacks which he was given a little sedation to relax but apart from that he was awake until a few hours before. He did become very confused towards the end and quite abrupt sometimes and then other times would be normal. I hope your friend has a peaceful ending.Emx
Thanks Emx for responding to my letter. It is so hard to let someone go that you love and watch them suffer in any way..thank you for your information. I am so sorry that you lost your Dad but he was lucky to have you...I am hearing more and more stories of patients that little or no family or friends for comfort...now that is heart breaking.
I that is what will happen with my friend..slow starvation..she hasnt eaten for quite a while with very little sips of liquids and she is sleeping more and more. She loves talking about the old days and all the trouble we use to get into so we do have a few conversations here and there.when she is more alert....there just is no easy way to do this...just be there..show them you love them.
I am sure your Dad is watching over you and again thank you so much for your kindness by responding to my message
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