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

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!

I came back to this thread today for the first time in a long, long time. I've been thinking about long-term recovery, and how my life has changed over the 6 years since I was diagnosed. Since the time when I started this thread, I finished 5 years on AIs in May, 2023, and my onc released me from care (although I was urged to come back if any issues arose).

I wanted to post again, because I can now see the answers to some of the questions I was asking back when we had this discussion. For example, now that I've been off AIs for a year, I can see that the pain I was having in my joints clearly was related to the medicine. It's entirely gone now. I wish that I had more clearly been told by my doctor that it was a side effect of treatment, so that I wouldn't have wondered so much if I was just being whiny about it. Now I can see that it was real.

Also, I feel better than I did for at least 2 to 3 years after I went through surgery and chemo. I honestly wish my onc had told me that I would need to extend my leave from work for at least 6 months after finishing chemo. I had plenty of medical leave that I could have taken, but I didn't know it was even reasonable to use it. My doctor just didn't address my work situation at all, and in retrospect, I was clearly too ill to work when I first went back to the office. My blood work didn't even begin to return to normal levels for at least a year and a half after chemo. I was anemic for a couple of years, and now that I'm not, I can feel the difference. I just don't get so short of breath anymore.

I also eventually got my eyelashes, eyebrows, and the hair on my head back, although it's different now. My hair is thinner than it was before chemo, but I don't know if that's an effect of the chemo per se or of just aging (I'm in my 60s). I worried about it thinning for a long time, but just within the past year I've felt like my hair has filled in a bit more, so that I feel okay about how it looks now. I never have regrown the light hair that was on my arms, and I still don' t have hair on my legs and armpits. That still seems a bit strange to me, but I try to focus on the joy of not having to shave!

I still notice that any wound, no matter how small and insignificant, takes forever to heal. Whenever one of my cats scratches my arm, it'll take a full month for the scratch to disappear. And I bleed under my skin just from carrying a heavy purse on my arm, for example. For this reason, I tend to have a ton of bruises and half-healed wounds visible all the time. But again, I'm not sure if this is my age or an effect of the treatment.

The one thing that hasn't really recovered is my "fire in the belly" at work. I plan to retire in a year and a half, and the day just can't come soon enough. I'm still carrying a huge responsibility at work, and my boss seems very happy with my work, but I know that I'm much less efficient than I was before cancer. I have difficulty multi-tasking, switching back and forth between two documents I'm editing, for example. Focusing is clearly challenging now, and my tolerance for long periods of concentrated work is much lower. I do still take ADD medication, which clearly helps significantly.

I still work with students and run our academic program, but the skills I rely on now are different— I use my ability to communicate clearly, to manage people, to set policy that's reasonable. I rely far more on interpersonal skills than my cognitive ones. And my motivation for work has never really recovered, post-cancer. I do the job because it's a commitment to others I care about, but I can't wait to retire and move to be closer to my adult children. And honestly, I have no regrets about stepping down from the more scientific aspects of my work. I just don't have the focus to do it right now.

In spite of the difficulties cognitively, I have been quite happy in my life during this period. It's a kind of peace that I don't think I had pre-cancer. Before I was diagnosed, I felt a huge drive to do something meaningful with my life. That's a lovely goal, but now I tend to think of life as a gift, something to be enjoyed rather than earned. That shift in mindset has made me much more content. It's a difficult thing to describe, but I like this change in my understanding of life.

Anyway, I'm posting this in case it helps someone else as they go through extended recovery from breast cancer treatment. As hard as I tried to educate myself about this disease, I really didn't know much about recovery, and my onc didn't provide as much information as I would have wished. And I couldn't really find information online about how others felt that their lives changed after treatment.

If you also have thoughts about this topic, please feel free to share here. I'll check back periodically. And I wish you well on your own path to recovery!

@needs.a.nap, I just logged in to find your post today. I hope you'll be super-gentle with yourself! You're still in what I think of as the "initial recovery phase"— at least, that's what that first 2 full years of diagnosis & treatment were like for me. I didn't understand that the treatment of breast cancer would have significant physical effects for several years after surgery/chemo/radiation were completed. So here's an example: My blood work looked worse AFTER my chemotherapy was finished than when I was actually receiving it, and it stayed worse for at least a year. Now, I can see that my immune system was smushed, my red cell functioning was clearly way down, my electrolytes were messed up— every time they ran the routine labs, the results were out of wack. Now, 6+ years after my diagnosis, I can see the trajectory of recovery took about 2 years for all of my numbers to get back in line. My oncologist never commented on those changes, probably because he's used to seeing cancer patients go through those changes, and he knew it would improve with time. But I didn't appreciate that those abnormalities were making me feel really bad— that they were the cause of my reduced energy, feeling "flat," and generally unwell. I literally thought I was just getting lazy in my old age (of early 60s at the time). I really did myself a disservice, and I didn't realize I was doing it. On top of the effects of surgery and chemo, I was on AIs and having considerable pain from them. We eventually ditched letroloze because of the pain, and eventually I was put on arimidex, which did NOT cause me pain for some reason.

I really hate that your young primary care doctor doesn't understand! Honestly, ADHD drugs have given me my career back! Sometimes you've just got to do everything you can to manage the symptoms, so that you have a greater quality of life, you know? BTW, I stopped trying to hide my more limited sort-term memory and concentration from colleagues several years ago. I'm doing the very best I can with the effects of my disease and treatment, and if someone doesn't appreciate that, I don't even care anymore!

@cyathea, it was lovely to find your post here today! I remember you well from your previous post, which made me feel so "heard" back when I originally started this thread. I'm glad you've found ADHD meds helpful, too. I take 15 mg, just on the days that I work, and it's helped my ability to focus so much!