my mom: inoperable cancer

Lynn,
You and your mom are in my thoughts and prayers.
Laurel

Prayers for the both of you and any other family suffering this burden. Oh why can't they find the cause and cure for this horrific disease?

My mom told us that she was not going to have any chemo or radiation when she found out she had lung cancer. By the time she found out it had already spread to other places as well.

I remember on day shortly after she had moved to the nursing center. It was a bright sunny day and we were sitting outside (while she had a cigarette ). She told me not to worry or fret that she was doing it the way she wanted to. She had been a hair stylist for a portion of her life and I think she could not bear to think of loosing her hair. And she was the kind of person that was always busy. She didn't like to just sit around so I know that's another big reason she didn't want to take treatments. She had seen enough of her friends wiped out and sick for days after treatments.

Anyway, she said we just needed to make the most of the time that was left. So that's what we tried to do.

I remember the next week she told us a funny story. She had gone outside that morning (for a cigarette ) and was trying to move the ashtray over by her chair and overbalanced and toppled over on her butt. She said people came running from everywhere thinking she had hurt herself. She thought that was pretty funny!

And another time we went to a restaurant....At that time she wasn't able to eat much and was very thin. She just ate a few bites of what she ordered and was full. When we got up to leave she said "When the waitress came to take my plate I thought about telling her I was on a diet" Too funny!

So I guess my advice is to look for the little things that are good in every day. Because they are there. You may have to look hard for them but you can find them. They may end up being some of the best things you remember.

Sometimes when things get hard for me I keep a journal. Before I go to bed I have to write one good thing that happened that day in the journal. Then, when I am feeling down, I can look back and reread all the good things that happen to me.

starting over, great idea.

ktri, just wondering how long between diagnosis and her death without treatments.

Mom was given 6-9 months and she died in about 6 1/2 and that was with treatments.

She was diagnosed with lung cancer that had spread to her ribs. Very sad story.

Mom had complaine dof pain in her chest/rib cage for months. The doctor treated her for some form of arthritis. She fell in the bathroom at home, and when they xrayed her ribs at the hospital ER they said she had indeed broken a rib, but it was eaten away by cancer. They called the oncologist in to the ER and that was the beginning of the end of her life.

ALl during the prior summer, when she phone her doctor to tell him of the pain, he told her it was the humisity. Take more pain medicine. He never did any tests.

You would think these days when cancer appears to be spreading to epidemic proportions that the doctors would rule out cancer FIRST before they start piddling around with everything else. Instead, they seem to look for the simplest reason for the symptoms, then stop there without any further investigation. I can understand that it can be like looking like a needle in a haystack, finding the culprit behind many symptoms, but I keep hearing over and over and over again, and have experienced it in both my Mom's and brother's cancers, that the doctors stopped with the first test and it took a lot of prodding to get them to investigate further. Why don't they trust the patients!!! We know our bodies, we know when something's wrong.

It took two months to get the doctors to investigate my Mom - they stopped when they found a bladder infection. I was adament that there was more going on than that - but it took almost two months before they finally investigated further and found that she was FULL of cancer, throughout her bones and spine. It was too late to treat her, but in between the original diagnosis of bladder infection and the final diagnosis of cancer, she endured much emotional suffering (one of the nurses actually accused her to her face of 'faking' it).

Same story with my brother. They stopped at the diagnosis of diabetes; it took many more trips to emergency before they finally took his concerns seriously and investigated further, and almost right away found that he had stage 4B (the most advanced) Hodgkin's Lymphoma - who knows if they had found the cancer and started chemo right away if it might have made the difference between life and death. A big part of the reason he didn't make it was because he was so weak by the time he began treatment - three months could have made a HUGE difference in how strong he would have been going into the chemo.

Anyway, sorry for the long-winded post, but this infuritates me that the doctors don't investigate further right away - especially when it's clear that cancer is so prevalent these days - and that early treatment is imperative in order to save lives.

Yes, I would agree Eagle. When they thought my mom had cancer they said they could do blood tests to check for "marker" chemicals that tell them it is likely to be cancer and I think even what type of cancer. I don't understand why they couldn't do this for your mom and brother. I would think that even if these are special blood tests, they would not be extremely expensive. Perhaps they are not good enough yet to be 100% reliable.

Dotsie, I can't remember for sure, but I believe they gave my mom 6 - 12 months and she lasted almost 18.

http://www.youtube.com/watch?v=Fin8_w153_A

Hey Princess...you mentioned this song and a certain line from it....so we found a live and purer version for you...ignore the first miniut of the video..the quality is not so good and that first bit is the end of a previose song...hope you enjoy it

This home holds you in our hearts

Celtic(with po editing for times sake)lol

I am so sorry Lynnie. I went through this same turmoil this past summer. My dad has stage 4 lung cancer and was diagnosed last August.

I will be keeping you and your family in my prayers.

Love and Hugs,
Cathi

dotsie and eagle i sorrie and horrified to hear of the treatment your loved ones had with the doctors. It is shocking!

ktri, so it looks like your mommade it longer than mine did with treatments.

Eagle, I am in total disbelief too. I am most disappointed in the fact that I didn't go to the doctor after Mom died and tell him what I thought. I'm sure we could have sued, but didn't want to go that route. However, I did want to make my point that he should run more tests in the future.

Cathi, good to see you. How are things?

Cathi, I'm glad to see you too - you're always on my mind and in my heart-prayers (along with Lynn and her Mom). When you have a moment, tell us how your life is going these days...

Dotsie, Gary and I had wanted to go back and complain, but never got around to it. But in 2004, hubby and I were sitting at the pool at our favourite resort in Cuba. We found out that the woman sitting beside us was also from Ottawa and struck up a conversation. I can't remember how the subject ever came up (there of all places), but we ended up talking about my Mom's experience at that hospital. Turns out the woman was THE main public relations person at that same hospital!!! (How's that for divine coincidence!)

She seemed to genuinely care and promised me that she wouldn't forget my Mom's story, but would look into it and then promised that she would make sure that changes would be made. About six months ago, there was a huge featured story in the newspaper about just this subject - focused mostly on how much positive change the geriatric and palliative care sections of the hospital had undergone in the past two years. One of the examples given of previous problems was how my Mom had been treated (she didn't use any names, but it was the exact same info I had shared with that woman). When I showed it to Gary, he agreed, and we believe that she really had taken our Mom's story to heart and used it to make changes in the way the hospital treats patients like her. It sure made us feel better!

Hello friends, I've read and re-read your messages on this thread. Thank you all so much for your caring words and prayers. I am so sorry for all of you who have suffered the loss of a loved one with cancer or otherwise. The blood tests for tumor markers are in infancy stage; the results are not accurate. There are statistics of false negatives as well as false positives. My oncologist did the tests when I had cancer, but did not rely on them at all. My mother is on Arimedex, a hormone therapy for breast cancer. If a drug is used to treat cancer, it is called "chemo" even if it is not the devastating chemo therapy we know of. I am not a fan of Arimedex, a drug I was also on during my breast cancer. I stopped taking it because the side effects were worse than the 2 percent chance of the drug having any benefit. It is my mother's decision to take it or not, but I don't believe she has an informed decision. You see, with the Alzheimer's she does not really know what is what! As long as she is on a form of chemo, she is not eligible for hospice. A patient can have hospice for 5 years if that is the way it goes. Hospice would come to her, offer her support, offer care-giver's relief for my step-father, etc. This is really hard for me to think of my mother there in AZ while I am here in CO. My mom is stable, but stable and dying. I don't even know if she knows she's dying. She stopped asking "Will I live through this?" I think she knows the answer. She also knows she is starting to forget her grand children's names. I can hardly stand it. By the way, my mother had been complaining of shortness of breath for years. But she had been diagnosed as a hypochondriac (when in a psych ward years ago) and was even told within the last 8 years to go home and get over herself. Who would of thought that for all these years, the cancer was choking out her lung away, taking her breath away. I understand all the reasons for her hypochondria, and I have a lot of compassion for that. In my book, where I examine my relationship with my mother (SA perpetuates for generations) I talk about the good memories as well, like when Mom created tea parties for me. That examination had started with a list when I was perusing childhood pictures she had sent me. Yes, she did say to me when I was in a psych ward: "Were you born to make my life miserable?" but that is redeemed when we are together now and she says "Did God send you to me, like an angel?" My grandmother said the same thing 2 years ago when we thought GM was dying, and I was caring for her. Now GM will be 101. She is a breast cancer survivor too, and yet she understands in her old, old age that her daughter will pre-decease her. Am I rambling? I am all over the place in my mind, and in my activities. The only thing I really want to do is stay home and clean. But there is the world at large, and I've got to participate. Eagle, that does sound like divine intervention. I mean what are the chances of meeting the PR person in Cuba of all places?

I'm sorry to hear this Lynnie. You're in my prayers.

Don't get me started on doctors and HMOs. They get bonuses for not doing the big costly tests. It took one year of me asking/begging for an MRI after the elevator malfunction for my doctor to finally approve it. He felt bad when he saw the results and I was vindicated.

Saundra, I did not know that about the big costly tests. I called my step f to wish him a happy birthday. This was 5 minutes after I'd learned that my husband got fired. I could not hide my sadness in my voice. When my mother got on the phone I could hardly talk, and even in her state she could tell something was wrong. I told my step f that I want to jump in a lake, and he said, "Please don't do that Lynnie. I'm going to need you real soon." Who would have thought that adversaries (he was not so good as a step f) would become allies? The core of my being knows that when there is nothing else, when all else slips through our hands, there is always love. Love is for eternity, even when we did not recognize it on our earthly journey. "It saddens me beyond my tears that love was lost within the fears."

Lynne,

I am so sorry for all of the challenges you are facing. But, I'm so glad that the relationship between you and your Mom is now good.

I'm sorry for your husband, also. Hopefully, he'll find something soon. Maybe a "stop-gap" job would be good - a low-pressure job, where he could get a paycheck and still have enough strength left to give you the emotional support you need.

Hugs,
Emily

Dear Lynn: I'm saddened to learn all you are going through!Please know that we are holding you and your family in prayers. When life's challenges are greater than our strength, what peace it is to know we are not alone to face them!

Love is forever! And we love you too! Please take time to do the things you enjoy, as that helps maintain a balance. You are a survivor, a warrior, a special person. You have a purpose, a calling, a goal. Let not the troubles cloud your vision and your will to thrive and survive, for this too shall pass! Recently, a friend reminded me that God never let's us face more than he will help us through!

May God cover you and your family with his blanket of pure love, providing ALL you need. Keep trusting, keep the faith! something good will come out of your challenges too!
Love,

Lynn, just to let you know that you're always being thought about, with loving care and prayer...

Sending thoughts at this sad time. Be assured we are all behind you and available to listen.
Mountain ash