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Old 06-07-2004, 01:03 AM   #1
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jelly97 HB User
Would you share your experience with what I see in mom?

Dear all, I'm new to the board. I would like to find out if any of you have seen the following conditions and share with me a little about your experience (sorry, I know it is painful) and what to expect in the next few months?

In early May, my mom was diagnosed with poorly differentiated non small cell lung cancer. I'm not sure which stage she is in (the doctors mentioned 'advanced stage')..but her right lung is affected (it was a 6.5cm tumour then) and it has metastized to her rib-cage, her trachea and also her lower back bone (a section of it). Surgery is out of the question since she is 85 years old. She has been put on palliative care, and she has received one set of radiation therapy to her bones already (for 4 days). She will receive another set of radiation therapy in 2 weeks time.

Doctors have told us that it is all palliative radiation and that she will only get worse. They are all giving her 4 - 6 months. She does feel weak now, spending most of her time in bed or in the sofa. She can still walk to the living room, give herself baths (i do notice shortness of breath). She's in pain and she's taking about 4 codeine tablets a day. Her appetite is really bad and that worries me a lot.

How true is the 4-6 month estimate? I understand it is just statistics..and it certainly varies from person to person...my mom is the kind of woman who has never even had a cold (well, maybe for 2 hrs..but then she'll take a nap and it's gone). She also has a very high tolerance for pain (really..she was a surgical study subject when she had no pain after major back surgery). But I feel she feels very frustrated and she doesn't seem to put up a fight with the cancer ...but she's 85...she has a right to choose..and maybe given her pain, she may wish to have a better quality of life rather than the quantity..but being her family, I really wish she can stay with us longer... She had me when she was 49..so I really didn't spend that much time with her (36 years only, about half of which I spent away from her due to school/work).

sorry for the long post.

 
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Old 06-07-2004, 01:29 AM   #2
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Join Date: Apr 2004
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Lizbef HB User
Re: Would you share your experience with what I see in mom?

So sorry to hear about your mum……………..I don’t think there are any definite answers any of us can give you – but we are here to offer you support and a chance to “sound off” if you need to. My 78 year old mum died of lung cancer 21 weeks ago (yes the pain is still that raw that I count in weeks!!). Like your mum, she was a fighter – not someone who I would have said would give in easily. Her problems only really began in the November – a persistent cough and eventually coughing blood which concerned her enough to go to the dr. She never really had any pain – none that she mentioned anyway, but began to have problems breathing. She was undergoing tests when we became sufficiently concerned to take her to the A & E department of the local hospital. She was admitted on 23 December and because of all the staff shortage over the Christmas period nothing really happened other than palliative care. On 5th January we were given the diagnosis of cancer and told it was inoperable so we started to make arrangements for home or hospice care – Mum had other ideas. To be honest I think she just gave up – didn’t want to be a bother to anyone and didn’t want to carry on unnecessarily. She effectively “turned her face to the wall” and died in the early hours of 13th. Her passing was what she wanted – peaceful and with those she loved most with her. I’d give anything for a chance of just another 5 minutes with her but in truth we had said our goodbyes, talked honestly of the love we had for each other and forgiven and forgotten all those little wrongs from the past. All I can say is spend whatever time you can with her, tell how much you love her…………and when she’s ready – let her go.

I’ll be thinking of you - let me know how things go
xxx

 
Old 06-07-2004, 06:30 AM   #3
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Join Date: Mar 2004
Posts: 140
haylee31 HB User
Re: Would you share your experience with what I see in mom?

I am very sorry about your mom. I know the grief and how

painful it is when a love one becomes ill. I lost both of my

parents to lung cancer. It is hard to judge one case to

another for my parents had different ways of dealing with

there cancer. My dad passed in 1983 and he had thought

he had tounge & throat cancer and was told it was caught

before spreading to his lungs. It was 10 months later they

found out it had spread to lungs and he passed away 2

months after. My mom passed in March 2003 just alittle

over a year ago. I was the caregiver for mom and she had

been having problems for near a year. Her family doctor

kept blowing them off calling it one thing or another. It

was when her family doctor went on vacation in Aug. 2002

that my mom seen his partner and he ordered test right

away. By this point it was to late she had several masses

on her lungs and it had spread to her liver & kidney and

neck. They told her she had 6 to 8 months and she lived

7 1/2 months. With mom I noticed her getting weak

with in a month after diagnosis. She spent most of the day

on the sofa watching t.v. She kept her spirits up and

always enjoyed company and really never got depressed.

Then as time went on she became tired very easily and her

last few months she slept 18 hours of the day.The night

before she passed she was awake and alert and talking to

the family. I dont know how much to believe in stats. they

were right on my mom but, know many who have way out

lived the stats. My thoughts and prayers are with you and

your mom. Haylee

 
Old 06-08-2004, 12:42 AM   #4
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Join Date: Jun 2004
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jelly97 HB User
Re: Would you share your experience with what I see in mom?

Lizbef and Haylee...

Thanks so much for your kind words. I'll let you know how things are going..she'll get her 2nd round of radiation (to the lungs) by mid-June. Right now, she's still recovering from the 1st set which was targeted at her bones. She is in pain, very depressed...and she was a very particular person before she was sick, so right now she is quite demanding. She lives alone in Canada, and I live and work in the US. My boss gave me 2 months to 'work from home'... (I'm a Christian and so is he, and he's been very supportive about family issues), so I'm staying with her and I brought my 3 year old daughter to cheer her up. My mother-in-law also came to help me out because I'm working from home, take care of mom and daughter at the same time. Having her help out is a great blessing, although mom gives her hard time as well and that causes me some added stress. (my MIL is very understanding. we lost our father-in-law to lung cancer last year also).

It is just really sad to see her suffer, and yet sometimes she drives me nuts. It's like she'll demand a certain temp of her food, has to be cooked certain ways, and she'll lose her appetite the minute she asked you to cook some difficult dish or buy sometime from a faraway store. I understand much of that is because of her illness, and some her personality. I was really hoping to spend some time with her, take her to places where she wants to go, but she is so weak and depressed she doesn't want to go anywhere. I can only try to say a word or two to her when she doesn't feel frustrated, depressed or angry.

I'm so glad I found this place...I read so many other family member's struggle and triumphs. It encourages me a great deal. Thanks so much!

 
Old 06-18-2004, 04:23 PM   #5
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Join Date: Jun 2004
Posts: 34
twisted123 HB User
Re: Would you share your experience with what I see in mom?

It's been awhile since you last posted but I wanted to add a few things.

If you are able try to ask her about her life and write it down. I she had a special recipe that she made but didn't have written down see if you can get that too.

Everyone is different but her told told us that she had 6 mo. to a year and she was gone within a month. Make good use of your time and take lots of photo's with you and your mom and your child and your mom.

(((((((((((((((((HUGS))))))))))))))))))) )))

 
Old 06-18-2004, 10:20 PM   #6
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Join Date: Mar 2004
Location: Central Minnesota
Posts: 163
Lady_J_1_01 HB User
Re: Would you share your experience with what I see in mom?

...Hi all.....welcome jelly......In reading the posts, I am taken back to those baffeled, helpless feelings.. I do have a sadden heart for all who write here. I know the sorrows and the pain of being the "other" person in the life of someone with lung cancer. I too wonder day to day how long,is it back, did the chemo work,am I doing all I can, am I paying attention, will he ever have energy, or be nausea free,pain free. Is this it......
I have been camcording. We watch comedies together,we get any "energy requiring " things done early in the day, we joke that he has so many "tokens" and he lets me know through the day when he is almost out... (honey, that used 5 of my tokens..) It gives me a base to go by without trying to guess when the moment will be that he is 'spent'. Somedays he feels he has many tokens, others,few.
I struggle somedays with feeling "homebound" myself, Not that Im resentful, it is just so paralizing and different, compared to the busy lives we lived before. I feel selfish to leave him, unless I have to for work,nessecities. Because I know while Im gone he suffers alone, unless I know he is sleeping and pain free.
Although we try,our conversations always focus around meds,pain,nausea,rest periods...It is difficult to talk of future plans,get excited about events ahead, knowing it depends on how he is feeling, so plans are put to the side.
Somedays I feel we are in a "holding pattren" and we are hostages...
I have began a diary,(havent had one since a teenager)I find it helpful. I dont want him to go....., I do all I can to know I will have a part of him, when he is gone, his voice on tape,camcorded,traced his hand. Somedays Im a rollercoaster, MS. TUFFSTUFF. and in the 'acceptance' stage of this, the next, angry and denying and barganing....then to WHY cant you be one of the 22% that lives beyound 5 years?
It is so good to have a place to come to and know, Im no different than any one of you, Seems just when I cant stand it any longer, someone leaves a post of just how 'I feel', and a reply that lifts me up and puts me back on solid ground. I know I say this all the time.... But thank you all for being thier... God Bless Mattie

 
Old 06-20-2004, 09:53 PM   #7
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positive4u HB User
Re: Would you share your experience with what I see in mom?

Lady
Do you ever have those days when you want the world to stop and take notice of the struggle you two are going through??Thinking of you!
Positive4U

 
Old 06-23-2004, 01:46 AM   #8
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Join Date: Mar 2004
Location: Central Minnesota
Posts: 163
Lady_J_1_01 HB User
Positive 4 You...

hi positive 4 u... I like that name .. and in answer.. YES I do.I know God wouldnt give me more than I could bare, but somedays I truley wonder... People who are not involved in Ca cant really understand the depths this illness reaches..... as I can say honestly,because I USE to be one......Now it is as though ca resides as an extra appendage to my being. (sigh) I know thier are worse illnesses etc... I see it in my work with termailly ill children..I guess Ive never had my heart nor my character challenged daily. Along with my pysichal limitations ..Like a table with 4 legs (family,faith,Job,morals/values) each 'leg' has been shaken and jarred,
Leaving me to feel afraid and insecure as to what the future holds...I have always favored learning and understanding the unknown....conquring my fears,and moving forward... but with cancer, just when I think I know the rules, and which way is home base , the rules change.
Few things I know for certain anymore, except I am so greatful to those who post their messages,... I cant control this illness or 'fix' it, and I now measure time in moments not minutes. Ill stop blabbing now, and end with a "Thank you Positive4u..maybe not the world.. but you noticed, and your note was thoughtful , sweet,and brought Joy to my heart.. knowing YOU know, and in someway share in my heavy load. God bless and keep you. Mattie

 
Old 06-23-2004, 02:09 PM   #9
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Join Date: Jun 2004
Location: Magnolia,Tx
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k311yandk3v1n HB User
Post Re: Would you share your experience with what I see in mom?

Hello,
my name is kelly and i am 14 and my mom has lung cancer too. i just wanted to let you know that it seems like my mom is very similar to yours. she never got sick before the cancer AT ALL. which is why it was weird when she got it. she has been through 2 rounds of chemo and 2 rounds of radiation. i am so sorry to hear that the doctors gave her 4-6 months to live(lets hope for the 6) i just wanted to tell you that this man down the street named bob had cancer too. they gave him about 2 weeks more to live. everyone was devastated. but you know what? he ended up living 3 whole years before the cancer caught up with him. im not sure if thats the case with you mother, only God can tell, but if i was you i would spend every waking moment with her and stay by her side as much as possible. dont worry about the statistics, and if God decides to take her, there is nothing you can do but show her how much you love her before she does go back home to live with God. i am really sorry to hear about your mom. you are in my prayers.
-Kelly-

p.s. please write me back to update me on her condition
and if you ever need anyone to talk to, i know i am
young, but i also know what its like to have a mother
that may die sood.

 
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