When you're all done.........but still undone by cancer

Fairchild

Jane, I think you are very fortunate indeed! I was introduced to 2 nurse navigators in the weeks after diagnosis.... and I never saw them again! Not ever. And no one called me-- not any of the other people treating the various other illnesses I have.

LB13, I'm glad if it's made you feel a little better to have found my posts here. I so understand that fear!!!! I had cancer 20 years ago-- a rare bone tumor, usually benign, but it came back over and over after surgery with good margins. I had an ass of a doctor, who wouldn't answer when I asked whether it could be malignant when it came back for the 4th time. It turned out that tumor was malignant, and I fired the doctor and had that part of my hand amputated by a specialist in the nearest major city. The whole experience didn't exactly improve my faith in the medical profession.

And in the first year after the mastectomy and chemo, I had 3 separate incidents of false positives, including a growing ovarian cyst which resulted in my losing my ovaries. All of this was benign, it turned out, but I got to the point where I didn't want any imaging at all, for fear that they would find something else odd in me that would need to be worked up.

And, of course, there's the attitudes of health care workers about this fear. It is perfectly normal fear-- we all have it-- but you would think we were neurotic as hell from the way we are treated. I've been to my internist about various odd symptoms that have cropped up in the last year, that she ordered a ton of workup for (and never figured out what was wrong). She finally reassured me that I was "mostly really healthy"--- and I could feel her thinking "Oh, she's neurotic!" Hey, it's not my fault that she couldn't figure out why I'm having these symptoms!

Ah, well. I gotta go-- I went out for a walk and I'm just really hurting. Going to lie down with a warm pad and see if I can make this pain better!

Linda360

I finished my treatment for TNBC 6 months ago. My husband of 25 years was completely unsupportive, angry and nasty. I am still recovering, very depressed and trying to figure out what to do next. I am a housewife with one daughter still in high school. I almost died from an infection during my treatment and had to learn to go to the bathroom and walk again. Now heading toward divorce. Is there anyone out that can give me some advice? So sad in Michigan.

MinusTwo

Linda - sorry to hear your husband was unsupportive and your treatment threw you so many curves. Did you have a nurse navigator ? Or do you particularly like one of your docs you could discuss this with? I've found docs that I bond with are the best place to get a recommend for a psychologist/counselor. It may be helpful for your daughter too. Hopefully this will be covered under insurance from your husband's company.

Fairchild

Linda, I'm sorry, too! I faced a similar situation when I had my first cancer 20 years ago. I sent you a private message-- Leslie

Annie60

Fairchild- you could have been writing about me. I finally gave up and started taking Adivan for insomnia and it has helped with the depression.

I have severe tinnitus. The depression is debilitating, the neuropathy painful. I don't wan to continue letrozole but am afraid to stop. I know it is contributing to how bad I feel, but cancer is worse.

I don't want to do anything anymore. I don't paint, carve or garden - I'd like to just be done

cyathea

Fairchild and Annie60, I can relate to those feelings and wondering how best to reconstruct living within this new reality. Time helps, but there are definitely some potholes and detours on this road. I wonder if time has given you other perspectives since you last posted.

I was listening to Tony Luciani’s TED talk this evening about his experience with his mother’s Alzheimer’s disease. He ended his talk by saying: “Life, it’s about wanting to live, and not waiting to die”. I think as long as we are in the “wanting to live” phase, we can focus on the things that bring meaning, belonging, and interactions within the various communities in which we live. Everyone has their own way of making life meaningful.

But I also think that there is nothing wrong with being in the part of life where wanting to live is no longer the guiding principle. I think we can also embrace the end of our life. I am not there yet, but I have a good friend who has fought the side effects of treatment for thirty years. Her body is worn out, and living is very difficult. Living with pain is exhausting. She is receiving palliative care and has accepted that some days are good and some days are truly awful. She is a brave soul and a woman who has given me inspiration for many years. It is hard to see her suffer. I can only hope that I will have the grace and strength that she has.

((Hugs)