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

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Comments

  • fairchild
    fairchild Member Posts: 155

    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
    Linda360 Member Posts: 1

    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
    minustwo Member Posts: 13,395

    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
    fairchild Member Posts: 155

    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
    annie60 Member Posts: 296

    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
    cyathea Member Posts: 340

    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)

  • moderators
    moderators Posts: 8,740

    @fairchild - We're truly grateful that you took the time to re-bump this thread. We're sure that hearing how things have progressed for you is reassuring for many others, even if some aspects were challenging or unexpected.

    Sending our best wishes as you move toward your well-deserved retirement and beyond.

    Sincerely,

    The Mods

  • needs.a.nap
    needs.a.nap Member Posts: 222

    Thank you @fairchild. Finding this thread today was so helpful! It’s encouraging to feel like others truly understand. Family and friends try so hard but simply cannot understand certain aspects of all of this, no matter how carefully I describe it, plus even I don’t understand my own feelings and physical changes at times!!! Everyone says “you look great!” but, boy, I feel like such an unproductive “lump on a log” these days with low energy, new body aches and pains, and greatly diminished mental capacity and memory (to name only a few SE’s) … I’m on year 1 of Tamoxifen. I just turned 50 and cannot believe the vast difference between how I felt a year ago to now. I’m still grateful for every day, but am struggling to adjust to the changes. This thread is wonderful! Thank you to all for sharing and for the encouraging update @fairchild.

  • cyathea
    cyathea Member Posts: 340

    @needs.a.nap I had the same struggles as you are having going into year 2. People like to encourage BC patients by telling them how good they look. I was guilty of this before BC. What I know now is that it’s OK to say that as long as you also acknowledge that the person is still being very brave through the ongoing challenges of BC.

    One thing that might be something to ask your doctor about is whether you can take a small dose of Ritalin to help you fight the fatigue and mental focus issues. It worked wonders for me! I only take it Monday-Friday, 2.5 mg in the morning with the option to take another 2.5 at noon. It has some side effects, but the trade off was well worth it for me since I’m not ready to retire.

    @fairchild I’m at 5 years but my MO and I agreed to stay on the AI…for now. Being oligometastatic makes going off the meds a bit tricky for me. When my Mom stopped taking her Arimidex, she felt much better and so far has not had recurrence. It’s nice to hear that you are doing better off the drug as well. I’m hoping I can join you in that at some point. 😊

  • lillyishere
    lillyishere Member Posts: 789

    @Fairchild, thank you so much for your post. I’m approaching my 5-year survivor milestone this month, and it looks like my treatment will continue. Having someone else who has walked this path provides such validation for what I’ve been suspecting—the AI treatments have caused so many side effects that have profoundly changed how I look, feel, and think. The impact on my work and home life has been significant too.

    Just the other day, my teenager pointed out that I’ve aged a lot in the last 5 years, and I can feel it too. No doctor fully prepares you for that. The only one who mentioned that I would feel tired and my skin would age quickly was my PS, and I deeply appreciate his honesty.

    Thank you again, Fairchild. Enjoy your time with your adult kids, and may you find peace and joy in retirement when the time comes.

  • needs.a.nap
    needs.a.nap Member Posts: 222

    Thank you @cyathea. I appreciate the suggestion and I feel open minded to managing the side effects. My young primary care doctor has already told me she’s hesitant to use drugs to counter side effects of another drug (which on the one hand sounds very reasonable, and prior to breast cancer, I might have fully agreed) … but I’m curious and will do some research.

  • jrnj
    jrnj Member Posts: 408

    Been a while since I have been on this site. I used to log on every night for like 4 years. I stumbled on this thread and really identified, so true. I am a mess. Tired and in pain every day. Chronic insomnia and no rem sleep. No one understands. Even Drs keep telling me I never had a case like you. I quit sleeping pills 2 years ago because they weren’t working anymore. Preletrozole they did work well. I am going through a divorce. Marriage was bad precancer, but the cancer was the nail in the coffin. I don’t have the energy or desire to maintain a relationship but it’s still really sad. I put all my energy into work and kids, 17 and 19. I have some Xanax that helps me sleep, only 3 pills a week and no Dr will give me a refill. So frustrating. I wake up every 2 hours throbbing in pain throughout my body. Life pretty much sucks.

  • fairchild
    fairchild Member Posts: 155

    jrnj, I'm so sorry that you're having such a difficult time! I've struggled with insomnia, too. My doctor has tried various options, including sedating anti-depressants & benadryl, but both caused too much mouth dryness. More recently, she prescribed a muscle relaxant which is working really well, and it's not addictive. I still have to be very careful to follow my normal routine— taking a warm bath, getting to bed reasonably consistently, etc., but the muscle relaxant has really helped a lot! I understand about the divorce— I went through one 25 years ago during treatment for my first cancer. I'm much better off without him, but it can sure be difficult to go through. Wishing you peace and much less pain!

  • fairchild
    fairchild Member Posts: 155

    @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!

  • fairchild
    fairchild Member Posts: 155

    @lilyishere, God save us from teenagers, right?! I also had a teen when I was going through treatment, one who didn't understand why my life was not all about her anymore. Fortunately, in the years since then, she's grown into a much more empathetic, intuitive young woman who now calls me "brave" for getting through it all!

    I hope your onc did the genetic testing (at least I think that's what it was) to determine whether continued AIs beyond the first 5 years will significantly reduce the odds of a recurrence. My doctor did order the test, and I was relieved to discover that there was virtually no advantage to my continuing AI meds!

    And many thanks for your kind good wishes for me and my grown-up kids!

  • fairchild
    fairchild Member Posts: 155

    @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!

  • annie60
    annie60 Member Posts: 296

    I am now six years from diagnosis and have been off AI since January. I have started painting again and am enjoying more good days than bad. Neuropathy still plagues me and will for the rest of my life. The long term use of steroids to treat chemo side effects cause diabetes, which is another life sentence. BUT all in all, my life is good. We are traveling again - short trips- but still enjoying the fall. I have spent days in the studio, which feels like life returning to normal. A new normal with the trials of getting older and dealing with issues like neuropathy and tennitus. I hope everyone can give themselves time to heal both mentally and physically.

  • tigglewinkle
    tigglewinkle Member Posts: 40

    I didn't go through chemo, so in some ways I feel like I shouldn't complain about the side effects in my life after active treatment since others have had worse. Most of my friends and family feel like I should be done but I don't feel like I'm done. I feel like I am scraping and struggling to get back to where I was when I was diagnosed. I went off the letrozole for a few weeks since I had some other side effects from radiation and wanted to get through them without the compounding side effects from the AI, but have to go back on this week. I know others talk about memory loss caused by chemo, but I felt as if I had brain fog from the letrozole. Maybe I am just casting around for an excuse but wonder if others have an issue with their AI. In any case….I don't feel like life is back to normal. I know I need to say on the hormone blocker but 5 years of side effects seem like a long time.

  • fairchild
    fairchild Member Posts: 155

    @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.

  • fairchild
    fairchild Member Posts: 155

    @annie60, it's so good to hear about your resumption of painting and those good days! I'm hoping to travel to Europe again once I retire next year. Like you, I'm 6 years out from diagnosis, and I'm so grateful to be alive!

  • fairchild
    fairchild Member Posts: 155

    @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
    tigglewinkle Member Posts: 40

    @fairchild Thank you so much for your kind response. I had surgery in July and radiation ended mid-September, so it is recent, but after active therapy I feel like I'm supposed to bounce back—which I haven't fully. It really helps to know I'm not alone and that others have had similar problems, and especially helpful to know that you switched AIs. Going back on Letrozole on Monday after a two week break and we'll see how it goes. Feels like a long haul and glad to know others think so too.

  • fairchild
    fairchild Member Posts: 155

    @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
    heikkipus Member Posts: 3

    @fairchild and all of you here, I just discovered this thread and have read every post - and found it so insightful and helpful. Thank you. There were so many things I identified with. I'm two months into treatment with letrozole, after surgery, chemotherapy and radiotherapy, and I'm struggling with brain fog, fatigue, joint and muscle pains, insomnia, etc. I also have a job that requires concentration and a high level of cognitive functioning (translation/writing), and am worried about how my symptoms will affect my ability to work (at present I am on full sick leave). Thank you for all the experiences you shared - and for re-bumping the thread to give an update. And thanks for the helpful tips - I may discuss ADD/ADHD medicine with my doctor, and will ask about an alternative AI if my side effects on letrozole continue. Best wishes to all of you from Norway!

  • moderators
    moderators Posts: 8,740

    Dear @heikkipus - Welcome to our community! We’re so glad you found us and that you found this thread helpful. As you can already see, many members struggle with brain fog and fatigue, so you're not alone. Besides other member's stories and advice, here are a couple of articles from our main site that you might find helpful too:

    https://www.breastcancer.org/research-news/researchers-say-chemo-brain-is-real

    https://www.breastcancer.org/research-news/neurofeedback-may-help-ease-chemo-brain

    Hope this helps! Please keep us updated on how you’re doing.

    The Mods

  • heikkipus
    heikkipus Member Posts: 3

    Thanks so much for the message and links to the articles! 😊

  • fairchild
    fairchild Member Posts: 155

    @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—

  • heikkipus
    heikkipus Member Posts: 3

    @fairchild, thanks so much for your reply. It’s great to hear about your coping strategies, and your students and colleagues sound wonderful. It’s really helpful that you share your experience of going back to work too early. I also have word-finding difficulty now (which is a problem in my line of work), and I struggle more than before with multitasking etc. I have great colleagues who I know will try to facilitate my transition back to work as well as they can, and we already have to-do lists that I know will help me a lot, but we often have tight deadlines and work under pressure. At present I’m thinking of starting to work 20% in January, almost 4 months after finishing 3 months of chemo (I finished radiotherapy in November), and then increasing gradually. I’m 52, so still have some years left before retirement. Luckily I have a good doctor, and talked things over with her today. I will also see my oncologist in January to discuss side effects of Letrozole. I can hear if it’s possible to be prescribed adderall here in Norway. Have you heard of Veozah? It helps with hot flushes and night sweats, and I know of people who take it with Tamoxifen, but don’t know if it can be taken with Letrozole. It doesn’t help with brain fog, but if I sleep better, my brain fog might improve. Thanks so much again for sharing your experiences!