More to the story

[Laura Ann]

As you can read in my signature, my mother is a stage 4 NSCLC patient, however this is not her first battle with this disease.

I have been reluctant to share this "story" for various reasons, but mostly because the incredible amount of guilt I feel for not being more more vigilant regarding my mother's history of disease.

In 1992 I was 31 and living about 100 miles away from my mother when it was discovered that she had lung cancer. Back then, I was all about myself and my life with my husband and three year old daughter. Mom assured me that the cancer was early stage and contained in the right upper lobe. Mom immediately quit her pack a day 30+ years smoking habit. She underwent a lobectomy and was told no further treatment was needed. She even quoted the surgeon as saying "you'll never have to worry about cancer again!" At the time I thought that sounded strange, after all none of us is immune to cancer, however I thought it best not to question her when she seemed so relieved and happy.

Over the next few years I really didn't think much about the cancer although in the back of my mind I often wondered if Mom worried that it might come back. There were times I thought, should I ask mom if she is getting checked or screened for recurrence but I really was afraid to sound pessimistic. After 10 years had passed I felt safe to say that I had no worries about the cancer.

When I received that dreadful phone call from my father in November of 2003 I was devastated. How could this be happening? The rest of the story is there in the signature.

Things are different now though. Mom is not going to be "cured". But I have not made the mistake of before by not getting involved. I have posted in the past about my strong feelings regarding caregivers and advocates, my mother's story is the reason why. Had I been more involved in 1992 maybe my mother would have gotten yearly CTs, chest xrays whatever, it would have been better than nothing. I know that "what ifs" mean nothing now, but I can't help but feel that I and the rest of my family had our heads in the sand.

Laura

[karenl]

Dear Laura

I think you will find that there are very many of us here that have played the 'could have/should have/would have' game. My Mum had been having annual chest x-rays since her bout with throat cancer 19 years ago - I wasn't even aware that she was having these follow-ups!! Her x-ray in July 2003 showed the lung tumour and subsequent investigations confirmed stage IV. Mum and Dad reviewed Mum's previous x-ray taken in January 2002, and could detect a spot which the radiologist obviously missed at that time, when it may have been potentially curable. "If only" the oncologist had been on the ball at that time; "if only" Mum and Dad had reviewed the 2002 x-ray at that time; "if only" I had known that Mum was having annual x-rays, I might have reminded her to have it done in January 2003 instead of waiting 18 months until July 2003.

The 'blame game' is a game you can't win, Laura. Don't even go there. You are NOT responsible for your Mom's situation. Just love her as much as you can - that's all any mother wants from her child.

All the best.

Karen

[Snowflake]

Laura,

Your guilt is misspent. You did the best you could at the time with what you knew. Now you know better and can do better, but you cannot travel back in time to "fix" what you may see now as an error. Even if at the time you feel it was all about you, your small family, etc., what you have to face is that you were YOUNGER then. At that time, the fact that you were focusing on a child and not yourself is a great thing, and something your mother probably fostered... "Laura has the baby, she doesn't need to worry about me"

Treatments and thoughts on cancer have changed. My grandfather was supposedly "cured" of prostate cancer in the 80's. Cured....no further follow-up. He died ten years later, after the cancer spread to bone and brain. Anyone's fault? Probably not...

Get past the guilt, Laura. You can't change anything that has already happened. LEARN...the past is a teacher. Take in what you feel you did wrong, change actions you feel need to be changed...and don't give up. If something doesn't sound right, get another opinion.

Allow yourself forgiveness for being young and taking things at face value. That's innocence. Not selfishness. Unfortunately, cynicism is something people grow into.

Great that you are now her advocate....but don't think you failed her early on, you didn't. In the words of Maya Angelou "We did then what we knew what to do - when we knew better, we did better."

Take care, and don't beat yourself up.

Becky

[stand4hope]

Dear Laura,

It's ok. Like the others have said. Don't beat yourself up. You certainly couldn't have changed any of this, so go to bed tonight and rest peacefully knowing that you are a wonderful, caring, loving daughter.

Love,

Peggy

[Justakid]

Laura-

What your feeling (I think) is normal, don't beat yourself up!

Your Mom is on my prayers!

[Amy P]

Laura Ann -

It also could be what the Dr's told her back then and no further monitoring was needed. Times have changed so much and treatments and follow up protocol's have changed as well.

Just a mere 4 years ago, Mom was told that any subsequent chemo or radiation would not improve her survival post surgery so she chose not have any and now she has had a recurrence - would the chemo have helped - only God knows. We allowed ourselves to play the what if game for 5 minutes and then decided since we couldn't change it why worry about it now - let's get on with it.

I agree with Beth, I think what you are feeling is normal - I just don't want to see anyone beat themselves up.

Much Love,

Amy

[gail p-m]

Oh Carol Anne==

I've had very similar feelings quite often, in fact. When my dad was first diagnosed, the surgeon said that he was 85% sure the cancer would never come back. I live 3000 miles away and my sister lives near my Dad. I was there during much of that summer because my Dad had been sick and the doctors could not figure out what was going on. Once the cancer was diagnosed and he had his operatioin, the little bit I did question to my sister, she would get very upset with me. My Mom had passed away 2 years before and my father was less than anxious to discuss the possibility of a recurrence. To be honest, we never even talked with an oncologist then which I can hardly believe now. However, my Dad was followed with CT scans which did catch the recurrence. Anyway, I frequently have these feelings of "guilt" or whatever thinking that perhaps had he had some chemo, perhaps there never would have been a recurrence. But circumstances such as they were at the time and me not living there, it would have been very difficult to push an oncologist visit. My father can be very difficult to deal with at times. I suppose this sounds like excuses, perhaps so. However, I felt my hands were tied at the time and I believed the surgeon. Believe me, I have learned from this experience. Always question, question, question, push for what you want and if you don't get it, fire your doctor.

Anyhow, good luck to you and your mom.

Gail P-M

[shineladysue]

Laura,

Don't blame yourself. Even if you had been there and made sure she was closely monitored it may have had the same outcome. My husband is a perfect example. He was getting follow up scans and then xrays from 2001 til 2004 when he was diagnosed with recurrence stage IV. His didn't show up on xray. It was in the bronchial stump and coughing up blood is was the symptom that took us to the pulmonologist. He did a bronchoscopy and that is how the discovery of the recurrence was made. I just want to say that thinking about "what if" won't change anything and you will never know. You are doing your best now and that is what matters. My thoughts and prayers are with you and your mom.

(((hugs)))

sue