Individualized Grieving


My mother had breast cancer, had surgery, then radiation. Her surgeon told her she did NOT need to have chemo, but the cancer doctor told her she did. She could not afford the chemo, so the cancer doctor presented her with an option to take a trial chemo. He prescribed this chemo to be taken hard and fast, not like it is normally taken. She trusted him and chose to do this. Three years later she started noticing that she had shortness of breath. She went to a lung doctor and found out she had to wear oxygen 22 out of 24 hours because she had pulmonary fibrosis caused by the chemo treatments. She was in shock. She did as she was told but we knew she would not have a long life. She died at 75, one month ago today. I am dealing with the grieving, I think, quite well. However, I am angry at the doctor for 'encouraging' her to take the chemo when he knew there was a very good chance it would burn her lungs. He even had the nerve to send my father a sympathy card complimenting my mother on what a good patient she was. I feel like he took advantage of his wisdom as a doctor by insisting she have this type of chemo. How do I handle my anger? I want to write this doctor a very ugly letter.

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I am sorry for your mother's passing. Has it been proven that the chemo caused the pulmonary fibrosis? My friend's mother did not have cancer, she had trigeminal neuralgia. At one point in her 60's she took an antibiotic that has been used since the 50's, macrodantin. When she was 68 she was diagnosed with pulmonary fibrosis. If you google Macrodantin, the first thing is says is that it can cause pulmonary fibrosis in elderly women. Although I do not consider 68 elderly, the medical books must. This woman was the picture of health, walked 4 miles everyday, was not overweight, took care of herself. The only problem was the trigeminal neuralgia. Did your mother ever take macrodantin? If so that could have been the reason why she developed pulmonary fibrosis. I also had another friend who found out he had it when he was 61, and had never had chemo or taken macrodantin and he passed just a year after being diagnosed. Have you considered that the pulmonary fibrosis was a coincidence and not a result of the chemo?
I recently lost my son, on July 18. He was born very ill, but outlived all of the doctors' predictions and choked to death at the age of 30 after work that night. I grieve everyday over the loss of my son, and I could place blame on several things. I could blame Jack in the Box for making the hamburger that he choked on. I could blame myself for buying the hamburger, putting it in front of him and not staying until he swallowed the last bite. I could blame my elderly parents for not being strong enough to do the heimlich maneuver or perform CPR good enough to make him survive. I have never placed blame on anyone for my son's death, even though my parents have. They blame themselves.
What I am trying to say is that maybe it's not the doctor's fault that your mother developed pulmonary fibrosis. After all he was just trying to get her the chemo she needed to hopefully save her life. I hope you find peace with things.

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Another way to look at it is ,how long would your mom have lived without chemo? Maybe it gave her that extra 3 years! Placing blame just makes you miserable. If, if, if is a waste of time. Just as Burt's mom said. Why beat yourself up over the past, no way can you change it & proving anything in court of law is nearly impossible. First question they will ask is if you are a dr., then how do you know the chemo killed her. Good chance she signed a consent form before she took it also & that would let them off the hook. It's still early in both of your grieving processes & emotions are raw. Burt's mom may be having some feelings of relief not to have to worry about her son any more (you have been grieving pretty much since day he was born because you probably felt his condition medically was your fault or helpless to "make it all go away" He would not place blame on any of you, I don't think. My dad is 95 & had a stroke 1 yr ago, he occasionally chokes, I gave him a baby aspirin before bed & he hadn't swallowed it so I sat him kind of 1/2 up, not a good idea as he did choke so now I know it is all the way up, He took my arm & said, it's OK. But I know now to sit him all the way up or check to be sure he swallowed it before he lays down! Ozark, I don't think the dr. was being mean at all, most drs. don't bother to even write the patient's family. I think he thought it would make the family feel better to know she was a good patient! Her Dr. was concerned enough to care how the family was doing, not many are that dedicated any more. I have a relative who's son got Hodgkin's disease, he had just gotten engaged & wanted to cancel the wedding but girlfriend wouldn't hear of it. He had to sign that the treatment could cause another type of cancer later in life. They had wedding & several kids & have had a good life. No one knows these things ahead of time. Just go on to live your life so your mom would be proud of you.

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I don't have any feelings of being relieved not to have to worry about my son. I know his birth defect was not my fault, and I did not blame myself at all. Even 30 years later, the medical community does not know what causes spina bifida, they have a guess that folic acid helps to prevent it but even women who take massive amounts of folic acid before they get pregnant can have a child with spina bifida. It was my pleasure to take care of him through all of his illnesses because he was the best child a mother could ever have asked for. He never complained and took whatever treatment was deemed to be necessary with a smile and a kind word. He always thanked the people who took care of him even if they had just caused him pain. That was how he acted even as a man, I let him know everyday how proud I was to call him my son.
He endured 19 surgeries, most of them were combined, so we didn't have to put him to sleep too many times. So in reality he probably had about 34 surgical procedures in all. He had been very ill 10 years ago with a staph infection in his brain and had 5 brain surgeries in 17 days and stayed in the hospital 23 days, came home had a grand mal seizure and went right back and stayed out the rest of the month of March, so he was there for a total of 31 days. I would give anything to be able to nurse him through an illness or take him to his doctors' appointments or even spend time in the hospital as long as he was going to get well.
I do agree that it is not constructive to place blame unless blame is duly proven. Take all that energy and put toward something productive and constructive.
This grieving journey is going to take a long, long time. I talk to as many people as I can about this because it helps, and for those of us who have lost children understand just how hard it is. I spoke with an older woman the other day, she lost her husband and her son 7 years ago. Her husband in Feb, and her son in Sept. She told me that the past few days to a week had been bad for her, and that she thinks of her son everyday. I am sure she thinks of her husband as well, but she lost someone she gave birth to and that is hard. As she put it "we aren't supposed to bury our children, they are supposed to bury us".
I hope you can work through your grief and anger and all the other emotions that we feel. Sometimes it's hard to process. That's when I give myself time for me.
Good luck in your grief journey.

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It's been a while since I posted to you about using your anger and grief to do something constructive. I still believe that, but after having re-read things and now that my mind is in a different place, I can tell you this. I fought for my son for 30 years. Going over a doctor's head to question a procedure or treatment or to get the doctor off the case. A year ago my father was very ill. He had been hospitalized for weeks and after he got out he had be rushed back to the ER. Because he wasn't brought in an ambulance he was made to wait over 2 hours in the waiting room, around people with the flu and other contagious diseases not to mention he was in horrible pain and could have been bleeding internally. After a 12 hour stay in the ER I did indeed contact the Emergency Department at the hospital and filed a complaint. I then heard from the head of the ER. We had a long discussion and he thanked me for complaining about the service/treatment my father was given. Things have changed a bit in the ER, unfortunately we have been there several times since. And the doctor I had the run-in with never comes near my parents which is ok with me.
Write the letter. As I have gone through my son's things, I have come across so many letters complaining about one thing or another for my son. Whether it was about a neurosurgical resident I didn't like, or no seatbelts on the school bus, or his inability to reach the bleachers when he went to high school games. I even have letters from Washington, D.C. where I wrote the president every month for years. I sent these letters and got replies because I wanted to make a difference in not only my son's life but for other people who encountered the same instances and who wouldn't speak up.
I'm sorry that I maybe came across in a manner I didn't mean, especially since I have written so many letters, doing exactly what you want to do. I'm thinking a tad more logically now and hope that you are doing better everyday. We have to move forward, without that movement we will stagnate and that is not why we are still here without our loved ones. We have to make a difference.

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I am so sorry for the loss of your mom and reading your story compelled me to write because my mother suffered from the same thing after following her Dr's advice.

She had battled cancer all of her adult life but developed lung cancer in the last part of 2007. It was diagnosed in Jan 08. I was devastated because my mom only weighted 96 pounds and I knew that raditation and chemo would take her out sooner than if she just let the cancer run it's course.

Her doctor convinced her the only option she had to fight was to take the treatments and she did. She started them in March of 08 and was gone by the second week of Aug 08.

Her death certificate listed her cause of death as pulmonary fibrosis. I did not understand what that was so I did some research and found that it is a hardening of the lung and that most patients that take those treatments suffer this side effect. Her doctor sent condolence cards and when I opened them, I was SO mad. I called his office and relieved my frustration and told them they were wrong for advising her to take treatments when they did not explain PF would be a huge side effect.

My mom did not die from the mom died from suffocation. For several months before she died she could not even breathe enough to take a shower on her own and it was devastating for her.

I feel it should be required by doctors to explain the full side effects that treatments for cancer can cause.

The very next year my father-in-law developed throat cancer and his doctors advised his to take the same treatments. He did not die because the cancer took it's course, he died because he could not breathe.

The anxiety this causes for a cancer patient is devastating for tham and for their family to witness. There is absolutely NOTHING you can do for them.

Knowing what I know now, if I could go back and do it all over again, I would have talked with my mom and discussed the option of letting things take their course and called Hospice in and let her live the end in peace. As it was, she suffered severe anxiety and fear from the suffocation the fibrosis caused.

Blessing to you for allowing me to share.....


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