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

fairchild · August 2020

I'm just wondering if anyone else feels like me. I was diagnosed in 2018, had the DMX, followed by chemo, and then monoclonal antibodies, finishing up in September, 2019. I'm still on letrozole and trying to get my feet on the ground after pretty much shutting my career down while I was in treatment. During 2019 I was dealing with repeated cancer scares.... a lump that had to be re-imaged (and turned out to be scar tissue), followed by a brain mass (that turned out to be nothing), following by suspected ovarian abnormalities (which turned out to be benign, but I had to have them removed).

I would have thought I would have put the cancer in the back of my mind and roared on by this point. But it's still a part of my life, and I'm a little confused by how distressing that feels. My body just seems so changed by it all, and I don't mean my breasts particularly. I have almost no hair on most of my body, including arms, legs, and "lady garden." I find that odd and didn't expect it. My hair has finally grown in, but much, much thinner than it was before, and I struggle with trying to find a style that prevents my scalp from showing through. My fingernails are truly awful-- just nubs that seem to grow very little. My feet are almost numb, so that I can't tell if I have socks on or not unless I look. My toenails are almost as bad, so I've ditched all my sandals.

And there are other changes that are maybe a bit subtler, but more important. I still seem to have a kind of mental fog, still, that interferes with my ability to focus, initiate, and organize at work. I forget whole conversations. I've even learned that I have a hearing loss caused by the chemo's damage to the auditory nerves. Following conversations on zoom or in a crowded room is really tough. And then there are the side effects of having my ovaries removed, on top of the letrozole. I'm in my early 60s and thought I'd finished menopause, but the symptoms are fully back again. I have chronic trouble sleeping, but don't tell doctors this, because I don't want another pill to take. I spend a lot of time getting ready for bed early, hoping that having really great sleep habits will help me manage to get more than 5 or 6 hours of rest.

I also spend a lot of time stretching in the mornings, trying to relieve the pain in my bones and joints. I assume that this is a side effect of the letrozole, but I know I need to take it. My onc seems unconcerned, but I feel like I'm 90 every morning, and again after I sit for any length of time. I try to keep walking for exercise, but I'm breathless still, probably from the anemia that's hung on since I had chemo. It's far more work to walk for a mile than it should be, especially given that I used to run miles without difficulty.

The impact is that i feel like i lose enormous amounts of time just trying to maintain myself, my health, my life. I take notes on conversations, knowing I'll forget details; I try various hair products, hoping my thinning hair will look better; I spend time in the morning trying to stretch enough to minimize the pain I feel; I try to make time to go to the pharmacy & set up the 18 pills I now take a day for the cancer and various other medical conditions; I juggle doctors' appointments. I'm clearly not as productive in my career and I feel like it shows. I'm single and wonder if I'll ever date again. The pandemic isn't helping any.

Don't get me wrong: I'm very, very grateful to be alive and relatively well. It could have been just so much worse. But I honestly thought that life after cancer would go back to life before cancer, and I'm a little shell-shocked to realize how different everything feels now. I don't know if the continuing changes in my life are from a lack of effort on my part to just "push through it." It seems like my desire to achieve, my "fire in the belly" is just gone. And I don't even know if I want that fire back, or if I want to just coast until retirement, and hope to reconstruct my life then, with fewer demands on me and more time to simply "be."

I should add that I do have people in my life who love me and support me-- two wonderful adult children who are very attuned to this struggle; friends at church who helped me through treatment; colleagues who care a lot about me; a therapist who has been extremely supportive. But nonetheless, I feel stuck and I'm not sure why.

Have any of you had these kinds of experiences? Is there any source of help out there for the problem of how to reconstruct one's life after cancer?

trishyla · August 2020

Short answer, Fairchild, yes. To all of it. I'm basically the same age you are and I feel like I've lost me in this process. My motivation is gone, I still have chemo brain and my joints are so creaky that I limp for at least ten steps when I first stand up. I'm a TV writer who can no longer write. A wordsmith who struggles to recall even simple words. I used to run/jog five miles a day, now I'm lucky if I can walk a mile.

My family (including 3 adult children) doesn't understand. They expect me to be the person I was before. My therapist calls it the curse of the competent. I used to joke that I could organize the world while still in my pajamas. These days I can't organize my way out of my own kitchen. I hate it.

Don't know what the answer is. To be honest I'm just muddling along right now, hating where I'm at, but lacking the impetus to change anything.

I hope you can find something that helps. If you do, please come back and share.

Trish

WC3 · August 2020

Fairchild:

I definately empathize with a lack of fire. I still have goals and aspirations but I find I lack the same level of energy I once pursued them with. I think some of this is situational. The odds of success are increasingly stacked against me. The cancer caused me to reevaluate my previous time and energy investments and I frequently analyze whether or not the continuing pursuit of my long term goals would be worth the time and energy investment should my cancer return as MBC and I am never able to achieve them.

I think though that there is also a physical component due to treatment induced menopause/anti-hormone therapy.

To be blunt, I've been a lot shorter on patience since treatment and do not have nearly as much of a tolerance for stress and hassles and chores as I previously had. My emotional and physical energy and ethusiasm are just not what they used to be and I easily become fed up with things in the sense that I would just rather not deal with them.

I think I also still have some subclinical anemia so I'm sure thay is also part of it.

fairchild · August 2020

Trish & WC3,

I want to thank you so much for your posts. I'm really glad that you posted about this issue, because it seems like I'm finding almost no information about it. Trish, I'm particularly sorry that your family expects you to go back to being the same-- what a burden that can be! This is perhaps one advantage of my being divorced: I don't have to listen to his expectations of me anymore. Of course, the flip side of that is that i miss having someone to talk to at home, particularly in this pandemic.

I empathize with the challenge of being a writer-- I am, too, though in a very different context. I'm a professor, used to writing research grants & manuscripts for scientific publication. I think for anyone who relies on higher-order skills like these-- the ability to be creative, to plan, to spend hours in focused concentration-- these post- treatment effects are pretty shocking. The problem seems rather subtle, the kind of thing I notice more than other people do, which makes it all the more maddening b/c I can't tell how real it is, you know? All I know is that hours can go by while I'm sitting at my desk and I have little work product to show for it.

MC3, you might be right about the possibility that some of this could be due to anemia. It's been a chronic problem for me, along with an impressive variety of other chronic illnesses. But as someone who has been pretty driven all my life, it's so hard to know when to step back and scale down, and whether that's fair to my employer or will cut my career short and make me more unhappy.

Have any of your doctors acknowledged to you that this is a real issue? Mine prescribed ADHD meds, which I take sporadically, but I don't know that they really significantly help. They do seem to cut down on the restless activity I noticed when I saw myself on zoom. Everyone else was sitting still, listening to the speaker. I was in almost constant motion. I've never had problems like this before.

But in some ways i wonder if this is a social problem as much as it's anything else. I work in an extremely male-dominated field in which high achievement is the norm. I stepped down from all leadership roles when I realized I would have to have chemo. I had enough medical leave to take off for 5-6 months and just deal with the illness. And then when I went back to work, I was still pretty sick and it showed. This isn't an easy field in which to hold back or to coast for very long.

Of course, that's external. The really distressing part is not knowing for myself how to change my life to get a better sense of making peace with it. I haven't really been the kind of person to coast, ever, but I'm exhausted at the thought of doing more than that. I'm pretty exhausted in general.

I'm sorry..... I'm blathering on. I'm not sure what the fix is, or even why I'm feeling this way. I have read stories about people who have fundamentally changed careers after BC, which is inspiring, but I'm not really itching to try something else per se, as much as just feeling detached from my work in general. Have you met other breast cancer survivors who felt this way?

Thanks so much to both of you,

Fairchild

WC3 · August 2020

Fairchild:

I haven't really brought it up with any of my doctors yet but I suppose I should. My field is also very male dominated. I've come across a number of cancer survivors who have experienced similar struggles for a variety of reasons. For me, I think normalizing my endocrine system would ameliorate some of my issues but as with most here, estrogen supplimentation is not an option for me.

I think in terms of physical and mental energy I could benefit from low dose testosterone if I can keep the dose low enough to avoid aromatization but some cancers have androgen receptors and I don't know if mine did nor whether or not their activation has a proliferative or suppressive effect. Also steroids tend to both increase my appetite and raise my fasting blood sugar so I might just be trading one group of problems for another.

I forgot to mention in my previous post that I also have the joint and cognitive issues. Not so much brain fog but certain things leave my mind quickly these days. People text me and I hear the notification then forget about it for half an hour.

cyathea · August 2020

Fairchild, thanks for sharing. Yes, even though I have MBC and am technically not done with treatment, I am having the same struggles. I continued to work through treatment this past year and I find it very frustrating that I can’t perform at my pre-cancer levels. I’m a typical “Type A” driven person.

I’m a consultant in the tech/data analytics space (also very male dominated and requiring high performing cognitive functions). Much like a lawyer, one’s worth to the company comes from “billable hours” for myself and generating them for other tech resources in the company. I can’t in good conscience charge for all the hours I’m spending now to get the job done. Since I was already working long hours before, it is impossible to “make up” for my lower productivity by working even more since I have to spend extra hours taking care of myself.

I found that I can’t rely on my memory and I’m only 52. If I read a client email on my phone and don’t flag it for follow up, I can easily forget I received it and fail to follow up later. This is something that would never have happened before cancer! Now that I know this, I am more vigilant in using tech tools to help me remember. I use Task lists and aggressive calendaring to ensure that I do the most important things early in the day.

My therapist says “be kind to yourself and treat yourself the way that you would treat your best friend.” I try but it is not easy to lose part of one’s identity and self worth when that has been wrapped around a career focused on helping others.

fairchild · August 2020

Thanks, Cyathea & WC3. It sounds like we are in pretty similar work environments. I don't know about y'all, but I find myself thinking pretty frequently about retirement. I'm 63, so it would be do-able in 4 years (although financially it would probably be good to work a while longer). I also wonder about my life expectancy given that this was my 2nd cancer and I have several chronic diseases that I manage, too. But as someone who has thrown a lot of herself into work for many years, I worry about the impact of stepping down entirely, you know?

Sigh. It's very hard to know when enough is enough, in terms of investing in work. And I find it really odd that nobody in my oncologists' office has asked about these issues, although I've told them that I'm struggling with cognitive difficulties. I wish I knew how long these symptoms last.

WC3 · August 2020

Fairchild:

I've known a number of people who went in to partial retirement. That allowed them to cut back on their work load or shift their focus to explorer other paths in life without idling and I think universities often offer more flexibility as far as this goes than non academic places of employment.

Chumbawamba · September 2020

THANK YOU SO MUCH FOR POSTING THIS! I came into the forum this morning specifically looking for a thread with this very topic. While it was great to read all of the success stories about how well everyone was doing after treatment before and during my treatment, it’s been so defeating to see so few, if any, testimonials of the suffering and lack of understanding and support afterward (and for me, it also came shortly after starting treatment). The hardest part for me has been the strong sense of failure imposed upon me by an unfeeling academic male oncologist who has been dismissive of most of my complaints and told me to find other specialists to address and treat them. I relocated to this area shortly before my diagnosis, so I’ve been extremely lacking of a strong personal and medical support system here. I’ve undergone every test imaginable and seen numerous specialists only to be told repeatedly that my complaints are likely side effects of the treatment. But, without an oncologist to support these conclusions, I’m left feeling completely overwhelmed and abandoned, wandering around in this dark and depressing post-treatment afterlife. I don’t mean to seem so dark, but I’m just so dang tired of feeling tired! Also, I am single and not only miss my wonderful medical docs in my formal residence but also miss all of my friends there. It’s very hard doing this alone so I completely understand what you all are experiencing.

cowgirl13 · September 2020

It is wonderful to hear something so real. Thank you.

lillyishere · September 2020

You have written my thoughts and my feelings. And I am no close to all you have gone through as treatments go, I am younger too but I feel the same as you do. I do work in an environment of mostly females and I have found more support from men than women for some reason that I can't even believe myself. Makes me sad but I am trying to concentrate on how to get back to some kind of normal health and life that will come with it. I only take letrozole and a bunch of supplements to help with side effects that are not doing anything good but I wonder how bad can it be without them. Not being able to remember basic words, events, and memories make me so sad. My teenage daughter told me last night, Mom you are so smart, and I teared up and I didn't tell her how my brainpower is going down the hill and she won't think of this for much longer. Sometimes I feel a puzzled look of my DH when I try to tell him something. I wonder if he thinks that I have lost it! My body feels like my grandma when she was in her 90s, my skin has turned so thin I can see the bones and some kind of muscle here and there. I had so many body changes and pains within these months I am taking letrozole and I wasn't prepared things can go down so fast and MO didn't warn me. Scary considering that SE are the same as recurrence. I have crossed the bridge and left my normal life behind and I am in the land that smells weird and fear. Only people like us who have crossed the cancer bridge will understand.

Thank you again for your posts.

xoxox

fairchild · September 2020

Ladies, thanks so much for these posts today! I hate that you are struggling, too, to resume your lives post-cancer. Chumbawamba, I saw a couple of your posts about being really symptomatic. I was on the same chemo you were-- TCHP- and letrozole, though I didn't need radiation. I couldn't work at all on chemo-- I was completely wiped out. I should also say that my pre-existing neuropathy from diabetes got systematically worse on Herceptin & Projeta alone. My internist actually measured the progression of my nerve loss. I also have some chemo-caused neurological hearing loss.

My oncologist had the same reaction that yours did-- He said the neuropathy couldn't possibly be worse, so it must be that I was just noticing it more. But there clearly is evidence published that the H & P can cause neuropathy. Fortunately, my neuropathy isn't particularly painful. I also had muscle spasms, particularly in my legs and feet-- Spasms so severe they would wake me from a dead sleep at night, with me rolling out of bed desperate to stretch the affected muscles out! They ran virtually every test they could think of and couldn't find a reason for it. I finished H & P a year ago, and if this helps any, my muscle spasms have mostly resolved since then. BTW, my oncologist didn't hesitate to put me on narcotics when I was on TCHP, but then I have chronic pain anyway from an amputation complication. I discontinued the extra doses without difficulty after finishing chemo. I hope you have the option to change oncologists-- Yours sounds like a jerk. And this is hard enough, without a jerk in the mix!

LillyWasHere, I'm so sorry that you're struggling still with chemo brain. My onc told me that if it gets better, it tends to do so within 2 years-- small comfort now, since it's over a year and a half now since I had chemo. Frankly, I've given up trying to hide my limited memory/attention span at work. If people don't understand, I'm figuring it's their problem. BTW, I also found that women seemed to be less supportive of my diagnosis than men did. People are odd.

I feel a little better now emotionally than when I first posted a few weeks ago. I'm working on just accepting that these are the symptoms I have (whether doctors acknowledge them or not!) and being considerate about my own needs. Today I made an appointment for physical therapy, because I'm just having so much pain with the letrozole that I've practically stopped exercising. I don't know if PT will help or not, but it's worth trying, and the particular PT I use has a great track record of working relentlessly to help me reduce pain. If that doesn't work, I'll try acupuncture. Surely there's something that can help. My last resort is to talk with the oncologist about changing the letrozole to something else, b/c I don't know that changing the particular drug will help that much.

I'd love to hear more about how y'all are doing!

Best wishes!

Leslie

cowgirl13 · September 2020

Fairchild, I've learned on these boards that just changing the manufacturer of these inhibitors can help as it can be the fillers that are the problem and not necessarily the drug. Some may try several manufacturers before they find one that works, and then go on to changing the type of drug can help.

limnogal · September 2020

Fairchild-I will add to what Cowgirl said. I took femara for 3.5 years. I did ok on it for the first 3. After that, the foot pain, leg cramps, weight gain, hair thinning, etc just got to be too much. I took a 2 month (MO approved) vacation from femara. Most of the adverse effects improved during that time. At the end of my vacation, I went back on femara, and the effects returned. I tried Arimidex (same issues), aromasin (almost all effects better, but foot pain remained) and tamoxifen (almost all side effects gone, but had wicked hot flashes). I’m now taking a half dose of tamoxifen daily, and it is a breeze. I don’t know how effective it is, but Whatever! I think I can make it through the next 9 months on it.All that goes to say-quality of life is important. There are other drugs, brands of drugs and dosing regimes out there. You can work with your MO to find something that allows you an acceptable quality of life. If your current MO won’t work with you, find one who will.

limnogal · September 2020

Fairchild-I will add to what Cowgirl said. I took femara for 3.5 years. I did ok on it for the first 3. After that, the foot pain, leg cramps, weight gain, hair thinning, etc just got to be too much. I took a 2 month (MO approved) vacation from femara. Most of the adverse effects improved during that time. At the end of my vacation, I went back on femara, and the effects returned. I tried Arimidex (same issues), aromasin (almost all effects better, but foot pain remained) and tamoxifen (almost all side effects gone, but had wicked hot flashes). I’m now taking a half dose of tamoxifen daily, and it is a breeze. I don’t know how effective it is, but Whatever! I think I can make it through the next 9 months on it.All that goes to say-quality of life is important. There are other drugs, brands of drugs and dosing regimes out there. You can work with your MO to find something that allows you an acceptable quality of life. If your current MO won’t work with you, find one who will.

fairchild · September 2020

Thanks for the information. Do you mind if I compare notes with y'all? When you talk about foot pain, do you mean pain at the bottom of your feet or at the achilles tendon in the back of the heel, where it feels very tight and sore, especially first thing in the morning? I stretch when I first get up, but I still have to go down the stairs like a little old lady, one foot at a time. With time, it gets better, until I've been sitting for a while-- and then the whole thing starts over.

The other kind of pain I'm having is in my hips and very low back-- a deep ache, especially when I'm walking in the neighborhood. It starts as soon as I start walking and gets worse and worse until I feel like I might not be able to make it home. At other times I don't feel it much at all. In addition, there's a deep ache in the back of my neck and even in the muscles on each side of my neck. I've been doing exercises to stretch them out, tricks I learned in PT, but it's not working anymore, and sitting in church, I'm aware of pain every time I move, even a little. Does this sound like the pain you're having?

I ask this because I do have damage in my low back, seen on an MRI right before the DMX. I know I have a disk out of alignment and a nerve that's compressed. However, that usually causes nerve pain down one leg, which I'm not having now. And recently, when I skipped the letrozole for a week, I felt SO. MUCH. BETTER. Like less stiff, less pain, and much more energy.

I really hate to talk to my oncologist about this, because I know he'll send me in for more imaging, and every time they image me they think I have cancer again. Until they investigate further, and then I turn out to be fine. There were 3 episodes of this last year, and every time it was terrifying. I just really don't want to go through it again.....

betrayal · September 2020

Fairchild: First I was on arimidex and lasted only 10 month before I said "enough". I felt one hundred years old and even though I had mild osteoarthritis it was intensified. If I sat, it was nigh on impossible to not repeat what I went through each morning to walk, etc. So my MO switched me to letrozole (femara) and even though I complained of increased joint pain, bilateral carpal tunnel (already had surgery on both hands years ago for carpal tunnel release), plantar fasciitis and severe back spasms. I had a steroid injection in what they thought was the source on the right side of my back (not the side of my surgery) and when that did not provide relief, I had two thoracic and then two cervical epidurals and still no relief. There were days I was literally in tears, I could no longer vacuum/sweep without triggering it and was limited in those activities that did not trigger it. Sitting on a plane for travel was agonal and I was taking tramadol for pain relief and even that wasn't working. I was on letrozole for about 3 years and again felt 100. I ended up being treated for RA but my rheumatologist feels that the source of my pain was actually the letrozole.

My MO had been talking to me about switching to exemestane for the past year and I was reluctant to make another switch since it meant I might run into a whole new set of side effects. For each of the AI's the SE meant I had to add another drug to counteract them and I was tired of being in pain, insomnia, depression, and hot flashes. Yes, I made the switch with the contingency that if the SE were unbearable I could go back to the evil letrozole since I already knew what it would do to me. I have about a year left on AI's, did not want to switch to tamoxifen and did not want to quit the drugs altogether. So I did switch to exemestane. So far the only SE I have developed is swelling of my feet and ankles to the point where wearing shoes was a challenge. So I am now taking a diuretic to counteract that and that has resolved. The plus is the plantar fasciitis is minimal, no night sweats/hot flashes, I still get insomnia on an occasional night, the depression is minimal, no carpal tunnel symptoms and the best is the back pain is totally gone. So I can now do household cleaning without triggering back pain. I do have some disc issues as well but even they have quieted down.

So there are other AI's to try to see if you can reduce your pain. It takes trial and error to find the right one and I am living proof of that. Talk to your MO about what you are experiencing and be a self advocate about what is best for you. I can tell you that I had office nurses tell me that my side effects were not related to the drugs I was on (not true because they cite the most common ones and quite frankly they are not on the drugs) and I told them they were because I was having them! According to my MO only 5% of patients develop lower extremity swelling and I assured her I was one of them. She listened and I am feeling so much better. It took nearly 4 years to get here and I regret having wasted so much time trying to find a workable solution. So don't take as long as I did to find out what is best for you. Good luck and I hope you can find a pain-free or at least less pain solution.

cowgirl13 · September 2020

Fairchild, I had this "When you talk about foot pain, do you mean pain at the bottom of your feet or at the achilles tendon in the back of the heel, where it feels very tight and sore, especially first thing in the morning? I stretch when I first get up, but I still have to go down the stairs like a little old lady, one foot at a time. With time, it gets better, until I've been sitting for a while-- and then the whole thing starts over." Totally describes it.

minustwo · September 2020

Me too - and I'm pretty sure mine is neuropathy. I don't have stairs but I walk like Frankenstein. Interesting that all three of us have taken Taxotere & Carboplatin.

lillyishere · September 2020

I have these pains but on my right side of the body: bottom of the foot pain started couple weeks ago, the right hip that comes and goes, right knee, and what is called tennis elbow even though I don't play tennis. Also, the neck, right side as well. It is not getting better. I have been in letrozole for 10 months and I haven't had chemo or radiation. This makes me think these are letrozole SE and have nothing to do with chemo. I never had any type of pain before I started letrozole. Even when I had DMX a year ago at this time, I felt normal after a few days of surgery and here I am now, a totally different person. Unfortunately, we are having SE of this medication and I hope it doesn't get worst. I have a feeling even doctors don't know all SE. Scary what this medication is doing to us. Is it toxic?

cyathea · September 2020

I’m right there with y’all. The foot pain seems to be a combination of neuropathy pain on the bottom of my foot (and particularly the front where the numbness is the worst) and plantar fasciitis. I feel like an old lady when I shuffle walk when I first get up, both because of pain and wanting to have good balance. After I walk a bit, the plantar fasciitis pain eases as the foot is stretched, but the neuropathy pain remains and sometimes gets worse when I’m wearing closed shoes.

My hip pain doesn’t happen much when I walk thanks to PT, but I still have pain when the hip joint is moved to the outer range of motion. My PT said I need to keep strengthening my core, back, hip and leg muscles.

The knee pain is new. 😫 My back pain is not. The scan of my spine showed normal degeneration in my lower back due to age (and probably poor posture and weak muscles).

The Tamoxifen hot flashes and head aches have been manageable, I’m still working on accepting the fact that I will probably never be truly healthy and symptom free again. I’m grateful that I do have some good/better days.

Last week, I was talking to someone about missing being able to take a vacation due to treatment and the pandemic restrictions. A simple question of “where did you go on your last vacation?” was a total blank for me. How could I forget that we went to Charleston for a week in the spring of ‘19 before I was diagnosed? I knew it was near Savanah and my brain offered up “Charlotte”, probably because of the “ch”, but I knew that wasn’t right. It was so frustrating

goldensrbest · September 2020

Fairchild - there are other options to Letrozole. When I started my MBC treatment a year ago, the leg pains from letrozole were horrible. My onc changed me to anastrozole and that eliminated the problem. Yet other patients have the same debilitating pain on that drug. We are all different in our responses and sometimes just need a tweak to our drug regimens. Good luck

fairchild · September 2020

THANK YOU so much for responding~! It is kind of amazing to me that it took this long for me to realize that the pain I'm having is related to the letrozole! I didn't have pain from it at first, so I assumed I never would... but clearly that's what's happening now. I'm 63, so I just assumed it was my age all of a sudden (which was a depressing thought). Well, while I'm at it, here's another question: Does letrozole interfere with sleep??? I ask because I struggle to get to sleep most nights. I have a relentless sleep routine: take bath by 7:30, read or watch TV, get to bed by 9:30 and let myself read some more. But some nights, most of them actually, I'm up until at least midnight, and sometimes 2 or 3 in the morning. I need to get up at 6:00 regardless of how I slept, so there's no sleeping it to make up for it. Oddly, I'm not wiped out the next day, but I sure am annoyed by all those hours waiting to go to sleep. I have been writing it off to the stress of the diagnosis, and more recently, the stress of being back at work and trying to fit in there.

I'm particularly grateful to hear about the pathway you've forged in trying different medications. I need to just suck it up and call the onc's office to explain what's happening. I loved my onc's ability to communicate with me when I was in active treatment, but it's very difficult to get his attention since I got over the hump of chemo. My last appointment literally lasted less than 3 minutes. Under those circumstances, getting him to sit down and talk with me about what's going on is really, um, challenging.

It's very helpful to hear your stories. I have been feeling a bit disappointed in myself, that I wasn't just flying along with cancer way behind me by now. To take the letrozole seemed such a minor thing after the surgery, chemo, etc. But it's been an odd experience, to try to reclaim my life after being detached from it for treatment all those months, and I'm realizing this isn't a situation in which treatment is easily "finished." Because, well, it really isn't over yet.

clarrn · September 2020

I am further out from treatment than most of you ladies (surgery/chemo/rads 2014), but I can assure you that many of us go through this after the 'active treatment' phase. The fight response goes away and you are left with the what the ? just happened phase. Where is the life and person I knew? It's where the grief finally caught up with me and I realized that it's not just one bad year but a change in everything. It was so hard having people say I was only tired like most people with small kids or that my brain fog was just like everyone who struggles to find a word or two once in awhile. To go from an avid book reader/ researcher to someone who can't focus enough to get through the first few pages was humbling. I finally went to a therapist, which helped me learn how to stop looking for my old life and reframe and accept where I am now. It does get better. Little by little I learned tricks to help me remember. I made routines/systems, and I reclaimed some things and let go of things that just aren't possible anymore. Life isn't perfect, and I will never say that cancer was a gift. I still expect too much of myself sometimes, and once in a while I have that pity party for the 'old' me. It took me awhile but I am truly happy now. And I think you will get there too.

limnogal · September 2020

Fairchild-in some ways, I think chemo is easier than AIs. The time period is (for many of us) limited, There are meds and support available to combat side effects. It is obvious to the world that you are going through treatment (thanks to that spiffy, pricey, shi**y hairdo!), and everyone knows, on some level, that chemo sucks.

AIs are no walk in the park. Be kind to yourself.

tinatoo · November 2020

Yes, I feel like you. I wish I could type more, but neuropathy has caused severe limitations. Sending positive thoughts.

cyathea · November 2020

LimnoGal, I agree. It’s not really that chemo was easier on the body, but chemo was like a sprint of intense pain and side effects while the AI is like a grueling marathon that seems like it will never end. The marathon is harder for me even though the side effects on my body are not as severe

fairchild · November 2020

Ladies, I'm so grateful for your posts here, every single one of them. Honestly, I wish someone had educated me about the long-haul recovery from cancer. Maybe we don't need to know about this when we are first adjusting to diagnosis and undergoing treatment, but certainly there's been time during my first year after chemo for my oncologist or someone in his office to mention these kinds of concerns.

I keep wondering how many of us "fall through the cracks" when it comes to the kind of information that would help us make a positive adjustment to the long-term life changes that occur after cancer. For example:

Did anyone actually bring up the topic of when it would be advisable for you to go back to work? (My onc never did. I did, and went back too early.)

Did anyone introduce the topic of brain fog with you and how that might impact work? (My onc didn't probably to all of these questions)

Did anyone initiate a discussion of how peripheral neuropathy might affect your work?

Did anyone initiate a discussion about how your sexual functioning might be changed after treatment?

Did anyone talk about how your energy level might be changed after treatment?

Did anyone ask about post-treatment depression or anxiety and how to reduce it?

Honestly, my onc and his staff never created the space in which any of these topics could be addressed, and when your HCP doesn't bring such topics up, it leaves you feeling kind of lost and isolated with these concerns. I realize most oncologists probably don't have the time to manage and treat serious depression or anxiety, but shouldn't they be screening for all of these common concerns, and at least referring patients to a HCP who could help?

Sigh. I've finished my 3 week vacation off letrozole and resumed taking it about a week ago. My pain level just soared a few days ago. Even the PT who has been treating me could tell I'm back on it, because my muscles were in spasms yesterday when I came in for what I hoped would be my last session. I've had about 2 months of PT, trying to get in the best shape possible, to no avail. So it's time to call onc again and figure out what to do about these side effects.

I'm really glad you guys are here. You are the only people that I ever talk with about this difficult adjustment to life after cancer.

fairchild · November 2020