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Joined: Jun 2003
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fuji Offline OP
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I got your post and I appreciate your encouraging words - I have a quick couple of questions for you (if you have time to answer) When your mom was fighting the infection did the her nurses play a big part in explaining her condition? It seems that my mom's nurses were always giving grim news, when the doc's seemed to have high hopes - It was very hard for my dad who is far from the medical expert! They were asking him if he wanted to put the respirator on and my mom was in the bed saying please do and gasping for air! Twice I thought the nurses were doing a good job of confusing my dad - Basically making it seem as though my dad should have just let her go and that was the best choice - If he didn't think for himself we could have lost her too soon - I was just wondering how your experience was - I hope it was much better - Also, did your mom need to have her lungs scoped to remove the conjestion? Mine is having her second tomorrow and we are hoping the best - The first one went well and helped her so much (she has been breathing on her own over 48 hours now (respirator doing very little, but still in place) - Anyway, sorry to be a bother or make you re-live any unpleasant memories - I'm just beside myself these days - my mom means the world to us - Take care and I hope happy days for you and your family!

Sue

Joined: Sep 2003
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Hey your post jumped out at me... my father was hospitalized last Monday for a low WTC count, mouth infections (very bad!), fever (102) and possible pneumonia. It turned out that he did not have pneumonia but his right lung was not functioning properly until yesterday. He is still there and treatment has been suspended. Has your mother also stopped treatment? This scares me... I thought it was bad to delay treatment. My father also has tonsil (stage IV). If you would like to talk, please feel free to email me - I am a nervous wreck also!

Diana


Diana
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fuji Offline OP
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Diana,

My mom was diagnosed in Jan/03 - She had so many setbacks that delayed treatment! I can't even tell you how many times she had to stop rad/and chemo (she still did well) - All I know is that as long as the docs are doing everything they possibly can, treatment should begin as soon as possible - I'm sure the delay won't make too much of a difference (depending on how long it is) Ask the docs whenever you are uneasy about something - My mom would have been going back on the chemo this week, but because of her problem it will be some time before she gets it again - Not having pneumonia is a good thing (it takes forever to clear up) I know what you mean about being a nervous wreck (I AM TOO) Please know that this is awful but in a lot of cases people come out of it and live - I'm sure we will get through this with our mom & dad - Be strong and e-mail me anytime - I'm always looking for someone who understands - My thoughts are with you.

Sue

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Sorry for the delay in getting back to you. I've been MIA trying to deal with some depression. As for my mom's pneumonia and her care, the oncologists didn't seem too concerned, the resident was was kind of freaked out (he's new to the biz) and one nurse in particular was very negative; she told me my mom had a poor prognosis. She made a point of telling me that twice within about fifteen minutes. The oncologists lead me to believe this was just one of the side effects that they had run across previously so I kept fighting to keep her spirits up, and telling her she was going to get through this thing. I spent some nights at the hospital with her because I didn't want that negative nurse around her and I didn't want my mom to give up, because a couple of times I thought if I wasn't there with her she may start to give up. Anyhow, again I apologize for the delay. My thoughts are with you.


Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
Joined: Jun 2003
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fuji Offline OP
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Never apologize - I completely understand - My mom is around and walking (believe it or not) The respirator was a life saver (literally) - We ran into many negative staff in ICU! - I'm glad she proved them wrong - I wish the best for you and your mom - I feel like we are living a hell on earth - My dad is starting his own depression thing now (I've been there already) Please take care of yourself and know that despression can be part of this - It is very common - Try and get some help for yourself and keep in mind that I'm always here if you need to vent - We will get through this!!

Sue

Joined: Apr 2002
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Number 1......negative nurses should be shot, I`m an RN and that`s the way I feel, thankfully, don`t own a gun..........my son was in ICU on a respirator for 3 wks, worst time of my life, makes you feel so helpless.....anyway, he`s doing great now............so hang in there........many Prayers your way.............Dee

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I also had a bad experience with the nurses when my mom passed away.

My sister and I were on the elevator discussing mom, when this nurse who was riding up with us from the cafeteria asked out of the blue if the doctor had told us she would be going to hospice. Keep in mind that the doctor had not given her or us her final diagnosis at this time. When we told the nurse this, she rolled her eyes up in her head and said she didn't understand why.

I don't know why some people become so de-emotionalized, but they don't always know what they are talking about. This same hospital, during the same time had a nurse tell my husband that he had the worst case of pneumonia she had ever seen and he would be a patient for at least a week. Needless to say, she couldn't read the x-ray and mistakenly thought his lack of an upper lung was pneumonia! He had had it removed 6 weeks earlier for possible mets.

Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)

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