When you're all done.........but still undone by cancer
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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!
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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.
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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.
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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
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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
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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)
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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!
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@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
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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.
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@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. 😊
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@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.
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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.
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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.
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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!
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@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!
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@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!
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@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!
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I had made, then deleted, a long post that said basically, cancer knocked me on my ass for many years. Diagnosed in 2017 and the lingering life effect is that I no longer undertake big projects because I am afraid the cancer will come back and kill me in the middle of whatever I am doing. And someone else will have to deal with my mess. I am pathologically averse to leaving work/mess/bother for someone else. Thus … here I sit, like a mushroom. I had my bucket list dog become available, a lifetime longing to own an Irish Wolfhound and the chance finally came! But at that same time they found a suspicious 'thing' in my good boob, which slammed me on my face mentally and emotionally and I said no to the dog. Turns out the thing in my boob is an unknown blob that they are still watching every 6 months (ultrasound) all these years later. But the dog opportunity ended. Because I didn't want to be in treatment or die and leave Hub with an untrained, monster sized dog to deal with. That is just one example of how cancer, even though it is no longer on my mind 24/7 like it was for many years, still has me hobbled and bound. I do my daily tasks and chores. But bigger life projects, they ended. Because the fear of returning cancer stopped me in my tracks.
Now I truly do feel like I'm waiting to die. This is not to say that I spend my days wringing my hands that the cancer is back and I just don't know it yet. No. But in the bigger scheme of things, I have become diminished to almost nothing, to avoid leaving a mess someone else has to wrap up. Before I had cancer I was blissfully unaware that my days were numbered. I knew it, we all know it, but I didn't KNOW it, if you know what I mean. Before cancer, I would have gotten that Wolfhound. I would have started building a house on our other property. I would have hired a landscaper (heavy earth moving equipment) and removed much of this forest and hauled in soil and built some gardens after stumping and sod removal. I did none of those things. They are long term projects. I do not feel like a long term person anymore. I get a lot done most days, but there is a sorrow, a heaviness of my reality that travels with me now. Something fundamental and not positive, changed in me. Although when someone tells me they have cancer and they have that look of bewildered shock and you can see they are trying to articulate some feeling that they have never, ever had before, I can nod in understanding because I know. That I DO absolutely know. Can I advise them how to 'make peace' with it? Sorry. No. Can't. I don't think I expect to make peace with it. I expect to carry it, like dead weight, everywhere I go and in everything I do. Or don't do.7 -
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.
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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.
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@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.
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@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!
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@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.
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@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.
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@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?
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