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!

@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!

@tigglewinkle, honestly, I doubt you are casting around for an excuse. I thought the same thing when I returned to work and felt utterly confused. Then I discovered that ADHD meds helped tremendously, so it clearly wasn't just "psychological." If I'm following your history correctly, you were diagnosed just this year, right? And had radiation? Honestly, I think radiation is harder to get through than chemo, given what friends have told me about it. (I had chemo, but not radiation.) Also, I believe that AIs can indeed cause brain fog, not to mention the effects of anesthesia, which take considerable time to dissipate. And that's not even to mention the amount of real estate that cancer takes up in our brains while we are going through this process, right? After all, you have to learn so much as you go through treatment. To be completely honest, I think you're still in the very, very early stages of adjusting to this, and expecting yourself to be over it is just too much. I KNOW I wasn't at all "over it" in the first year. It just takes a long time.

Re AIs, I was on them for 5 years. My doctor changed the type of AI 3 times over those years because of side effect problems. And 3 or 4 times I took breaks of 2 to 3 weeks from the AIs altogother, because I just had to see if the pain I was feeling was all in my head. Clearly, it wasn't, because it always got better when I was off the meds. But the breaks actually helped me cope with the side effects, by giving me a respite from symptoms, so that I felt a bit better by the time I started them again. You might want to talk to your ONC to see if that strategy might help you.

@runor, I'm so sorry that you've had so much difficulty feeling like your life is moving on again after cancer. I don't know whether you will see this entry or not, but I'm offering a virtual hug.

@tigglewinkle, Yeah, I remember thinking about needing to take those meds for 5 years and how extremely long that seemed! I hope your doctor will consider all the options. We eventually tried arimedix (spelling?), which was the 3rd AI. To my surprise, it really did cause me much less pain that the previous meds. Also, I hope your doc will acknowledge the side effects that you do experience. In retrospect, I honestly wish I hadn't thought (virtually every single day!) about whether that pain I was feeling was real or just me being a wuss. Now I can see that it was, in fact, real— and I wish I had honored my own experience a bit more, you know?

@heikkipus, thanks for your kind comments about this thread! To tell you the truth, when I started it I didn't know whether anyone else found the "re-entry" after cancer treatment to be as confusing and disorienting as I did. It's been really helpful to learn that others go through this phase as well. I'm a university professor, so I entirely get your concerns about cognitive functioning and treatment. I returned to work within just weeks of finishing chemotherapy, just to teach 1 class at first, and it was daunting. The first thing I noticed was that I was having word-finding difficulty, which you really don't want to have while lecturing! I also realized that I couldn't follow a discussion in faculty meetings. When multiple people were speaking, I couldn't seem to separate their voices, so everything ran together. I reported that to my onc, who promptly started me on 15 mg of adderall, which has been a Godsend for me. I still have some clear difficulty focusing, but I'm at least effective in what I do. The onc said the symptoms of brain fog generally clear within 2 years, but can be longer-lasting, so I probably fall into that latter category.

However, with time, I've found ways to cope. I'm 68 now, and close to retirement, so I don't feel like I have to hide this consequence of treatment. I'm pretty open about it, and I've found that my colleagues and students are quick to help me out. For example, my students send me written summaries of our meetings, with a "To Do" list for them and for me after each meeting. It helps keep me on track. I've also purposefully moved from doing complex research to a more administrative role leading our doctoral program. That new position uses my current strengths better— my professional judgment, my ability to get people to work together effectively, my ability to be supportive of our students. In this position, I don't have to multitask as much, and I find this role to be truly rewarding as I get to the end of my career. By the way, I worried a TON when I first came back to work about whether I'd be able to be as productive after cancer. In retrospect, I wish I'd trusted more that I would find new and valuable ways to be productive.

I also really do wish I'd known that recovery goes on for quite a while after treatment is finished. My onc really didn't advise me about returning to work at all, so I assumed I should go back to work as soon as I finished chemotherapy. It was truly FAR too early! I only had 1 class to teach, 1/2 of my normal teaching load, but I was utterly exhausted after each class. I would fall asleep as soon as I got home. And my blood work clearly told the story: All of my electrolytes and blood values were completely out of whack for about a year and a half after I finished chemo. Then they gradually became more normal over time. I was, in fact, significantly anemic throughout the first year after chemo.

Later I heard that a good rule of thumb was that it takes twice as long to get over chemo as it takes to go through it. I was in chemo for 4 months, so by that guideline, I should have been off work for another 8 months. In truth, even longer would have been reasonable. But when you're a person with a high need to achieve and a strong sense of personal responsibility, it's very difficult to be the person who says "I'm not ready to return to work yet. Will you approve a period of recovery for the next XXX months?" I believe my onc would have been entirely supportive if I had asked for the time off, and I certainly had plenty of sick days I could have taken. But I just didn't know that was reasonable.

Anyway—- This is a long-winded way of saying I hope you can take better care of yourself than I did! I fumbled through it, but I do realize that I didn't need to put that much pressure on myself. If there's anything I can do to help, or you have questions, I'd be happy to chat further! Best of luck to you—