New phase - new forum

kber

As I progressed through treatment, I've also moved through BCO forums, from diagnosis to treatment, with occasional stops in the Mental Health chats. This site has been a godsend. Now I've finished active treatment and I'm both excited and apprehensive.

Background - I felt a lump almost exactly a year ago, which kicked off what seemed like a whirlwind of diagnostic tests, chemo, surgery and radiation. I kept a journal and even just 2 to 3 weeks out, re-reading some of my entries feels like reading something from another person. Did I really go through all that? Was that me?

Now I'm not sure what's left or who I am. I made an appointment with a psychologist who specialized in treating current and former cancer patients. When I called, I explained that it wasn't a real emergency but I wanted to touch base. She asked what I was feeling that prompted the call and my honest answer was "nothing". No fear, no relieve, no anger, no joy. Anyway, she cleared her calendar up immediately and we will talk this week.

I've made a bunch of practical appointments - non-oncology related doctor visits I've neglected, Livestrong / YMCA intake, weight loss and weight management. (Gotta call the dentist tomorrow - I'll make a note in my calendar.) I also had sex with my husband for the first time in almost a year, so there's that!

But it all feels surreal. Really this whole year feels surreal.

How long did it take for it all to sink in, and then to put it in perspective and then to put it (mostly) in the rear view mirror?

Farfalla6

I really appreciate this post and this topic. I just finished rads on August 27 and while I feel physically back I don’t know how it is emotionally settling out. Would also love to hear people’s experiences. Thank you kyber for starting this thread.

Spoonie77

Thx for starting this, Kber. Feels like a much needed topic to contemplate. Would like to add myself to the thread.

It's been well over a year since surgery and I'm definitely still wandering. Am eager to move forward and find myself looking in the rear view mirror less and less. Just not sure how to get there, what with new dxs (MS, possible Thyroid Cancer, and enlarged lymph nodes) plus other symptoms consistently popping up. Feels like it's one thing after another that keeps me tied down to the rollercaoster. I want off. Will settle for hearing how others are fairing and live vicariously through y'all till I can get there myself.

Thanks in advance to all those who share and post. It's always helpful to be reminded we are not alone, even while wandering .

AdAstra

Thanks for the thread, Kber. I had my diagnosis and surgery almost three and a half years ago. Still undergoing hormone treatment. It wasn’t until roughly a month ago that it sunk in that I am going to live. Who knows for how long, but at least long enough to contemplate what I want to do with the rest of whatever time I have left.

It’s so strange to watch the “what if” that pops up with every ache and pain shift into, “I have a life!... now what do I want to do with it??” There’s still ‘what ifs’ that happen, but it seems like the balance has shifted. More looking ahead with anticipation instead of anxiety.

I won’t say that BC is in the rearview mirror (especially as the bathroom mirror reminds me every day of BC) but it doesn’t rule my life the way it did previously.

Ingerp

Maybe not on-topic but my hair is a daily reminder that BC is still part of my life. I’m hearing it may be another year before it straightens out. If/when that happens I’ll only be left with the AI. I’m a little pissy these days that I still have to deal with that 4+ more years. But I’m a little pissy about everything these days.

kber

We all have the right to be a bit pissy!!

I picked up a note from one of my many doctors - a release for the YMCA / Livestrong program, but it feels more like I've been tagged and released back into the wild. Every 6 months they will track me down, run a bunch of tests, and hopefully release me back into my natural habitat again! So I'll try to return to a normal life, but with this imaginary big orange tag around my neck. I always wondered, when they release animals after rehab, do the other animals see the tag? Do they know that particular herd member is "different"? Can they smell the aftereffects of the vets and animal rescue staff? Do the animals themselves understand that their life will be different from here on out, with regular capture, test and release events?

Thanks, everyone, for your answers. I appreciate your insight and especially your honesty!

ctmbsikia

Earlier this year I was still quite annoyed by the whole cancer thing and I also wondered, will I ever feel normal again? I don't want to wait 4 more years to be done with this treatment. I'm done now!!! I had to catch up on other appointments too, I had appt. fatigue! I have osteoporosis to deal with too--- soon. I have learned so much about this disease. For me, I had to make time to step away, go outside, take a cancer break, and just go about life with the I'll worry about it later attitude. I had to make some life habit adjustments. I keep telling myself it's good and if I feel good everyday then whatever it is that I adjusted is working. When it doesn't work, I adjust it again. It annoyed the crap out of me before, but I'm doing much better now with the feeling good, doing good being first and foremost in my mind everyday.

Magari

Great topic, with some wonderfully insightful responses so far.

I feel I've done a pretty good job of moving forward and feeling like less of a "patient" all the time. But as a member of the triple positive club, it's been a long road and the end is still years away.

Considering the fact that I thought my initial BMX with DTI reconstruction was going to be a "one and done" situation, this has been an unpleasant adjustment to make. But then, everything about a cancer diagnosis is, right?

I got a bit of a break after finishing Herceptin/Perjeta infusions, when I no longer had to go to my MO's office every 3 weeks. Did well on Arimidex for the first 6 months, but then side effects became more difficult. Recently had to have a revision surgery to switch out my implants and am now dealing with new scars and adhesions.

Just tried Aromasin for a month and that wasn't working well for me so now I'll be trying Femara. There's a lot of "tweaking" that I wish wasn't necessary. My hair is still growing out.

Still, I feel pretty good overall and have gotten back to more or less my usual routine. Just with more medications and supplements!

Farfalla6

I worked through chemo but now I am not only physically 100% but a little crazed with energy: maybe its that I'm so grateful to feel strong again, to be able to work a full day, have patience with the kids, know I'll be able to attend whatever school events I need to, do whatever work in the house needs to be done, etc etc. But I'm also thinking how long this will last, never forgetting it might not. I'm exercising a lot, which I was doing before, but I am eating better--I lived on grilled cheeses during chemo because there was little else I could tolerate. Now I eat a ton of salads, some fruit, beans,fish, much less sugar, minimal wine.

I don't know if any of you saw an article in the New Yorker by Anne Boyer about her breast cancer treatment and her experience. I read it and she has a new book out. Her article was angry and merciless about the toll the treatment takes(she had surgery/chemo/radiation) and I reread it at different times during my treatment and had different feelings about it. But I've read every halfway-decently written memoir about breast cancer I can find and I will certainly read this one too, she's a powerful writer.

I feel very lucky, in that I was stage 1, and my lumpectomy scar is now invisible and my body, externally, looks the same, except for my hair. But I have a wide range of anger, gratitude, terror, denial, magical thinking, etc. I was never one to feel immortal before this as I have other chronic illnesses, and have been close to death before, closer than the breast cancer has brought me up to this point, so a feeling of fragility is not exactly new and at least there is a community (you guys!) so I feel less lonely about this condition than others. But the fact that I am lucky to be able to "hide this" makes me feel like an imposter in the land of the well. Though of course I also know you don't know what other burdens, illness or otherwise, others carry. So I go back and forth: it's over, its not over, I'm lucky, I'm not lucky (I did still get triple negative BC before 50), I feel great, I'm running from my fears with all my activities, and so forth....

MountainMia

This thread is exactly what I was looking for. Tomorrow is my last radiation treatment and is the end of active treatment ("for this time," I hear whispering in my head.) My husband will go with me. We'll see the RO one more time. I'll ring the bell. We both may weep, as we did when chemo was over. And then what?

I'm trying to write an email to my adult children to update them all, at the same time in the same way, about where things stand. I wish I knew. I want to describe some of my thoughts and feelings to them, but I don't even know what they are.

I want them (and EVERYONE) to understand that whether or not I have cancer cells in me, cancer is a part of me now. I don't want to forget about it, and I don't want them to forget about it. Nor do I want it to continue to supersede everything else in my life. It needs to take its rightful place, but I don't know what that means.

"For this time," I hear whispering in my head.

I feel oddly sad, and I don't know why.

Scrafgal

MountainMia

I have not posted on the forum in quite some time, but your comment is one that made me want to share to say that I feel the same way...I just had my last surgery a few months ago, and nipple tattoo done, so I am done with treatments and feeling the same way that you've just expressed. Can't leave it behind but don't want it to dominate my life either. I don't know what to feel...except grateful.

Congratulations on reaching this milestone in your journey...

MountainMia

Here is a long post started in 2009, I think. The information in the original post is helpful. The comments vary, but the big thing to take away is that feeling at sea, or having mixed feelings about being done, is very common.

https://community.breastcancer.org/forum/7/topics/477781?page=1

MountainMia

Last radiation treatment was this morning. It's a relief but mostly I feel tired and weepy.

Scrafgal

congrats MountainMia...and thank you for sharing the link above. I found it helpful. I have been trying to understand my feelings and explain those feelings to others, and I was not doing a great job of it. That thread helped!

MountainMia

Thanks, Scrafgal. It helped me, too. Also it helped me write to my kids. This is what I sent them:

"Today was my last radiation treatment. YAY!! It actually feels weird to say that. It's both a relief and hard to believe. After this comes monitoring with a schedule of mammograms, probably every 6 months for a while, and then back to an annual basis. It's possible I'll have MRIs, maybe ultrasounds, but no other scans or blood tests are expected.

Radiation side effects have been fairly minimal and pretty tolerable. My skin is tanned, speckled, and sensitive. The skin is expected to get worse for the next couple of weeks, possibly blistering, and then improve quickly. My chest is a little inflamed in general, and I may be a bit anemic, so I'm short of breath again. Generally I'm tired and wimpy.

So what now? Now it's time for some rest and recovery, and to regain some strength and stamina. It's time to look farther ahead than the next appointment.

Here are some other thoughts, just so you know where my brain is. There's a lot and it's hard to sort it all out.

First, I feel incredibly fortunate that my cancer was caught early. Because it was so aggressive, a few more months could have made a big bad difference in treatment and prognosis. Second, I'm also incredibly lucky to have your dad to help me through all of this. Luckiest day of my life was the day we met.

But life will not readily go back to "normal." And "new normal" is a phrase I reject. Physically, due to the chemo in particular as well as less activity, I've aged several years in the last 7 months. With recovery I can roll some of that back again, but I'll never get all the way. I feel defeated in some ways and as if I can't be as ambitious for the future. Among other things, some of the travel we've considered just seems unlikely now.

And the prospect of a recurrence will haunt me for a long time. The triple negative type has a higher rate of recurrence than other types. When it does recur, it's usually in the first 5 years. My tumor was small, the lymph nodes weren't involved, and my treatment was appropriately aggressive, giving me pretty good odds. But cancer is slippery, so I can't count on that.

I'm not saying this to make you worry. I'm saying this so you can understand why cancer is still part of me. I don't want to forget about it, and I don't want you to forget about it. Nor do I want it to continue to supersede every other part of my life. It needs to take its rightful place, but I don't really know what that means.

You also should know that these mixed emotions are very typical for those coming to the end of treatment. We've gone along for many months (and for some people, years) simply doing what we need to do. Someone else makes a plan; we nod and agree to do it; and then it's done. And then what? Now it's back to figuring it out for ourselves. Between being at loose ends all of a sudden and also having lower energy, stamina, and strength, it's hard to know what to do. It's confusing. It is oddly saddening.

Some people expect the cancer patient/survivor to put the experience behind them quickly. The visible, physical changes make that hard. Right now my hair is about 1/4" long, and believe me, I'm pretty excited about that. But it will be a long time until it looks like it did BC — before cancer. For me and others, that isn't the only visible change.

So if you think, some months from now, that I really should be "over it" by then, remember that I will probably never be over it. Remember that, as I said before, cancer is now part of me.

I am happy to be done, but "happy" isn't the only thing I feel.

Thanks for your love and support always and especially over the last 7 months. You all mean the world to me."

Scrafgal

Nicely done, MountainMia. Honestly, these are my sentiments exactly!

anamaeted

I had my surgery 1 year ago on 9-11-18. I finished my radiation on 3-11-19. I am now in remission, but I am still healing emotionally. I still stop once in a while and think "wow, I really had breast cancer. My husband is my rock and gets me through it all.

bravepoint

I'm glad that I found this thread today. I am almost 2 1/2 years out from the end of my treatment (surgery, chemo then rads). I go for Zometa infusions every 6 months and had one last week. My last one will be in March. I am also taking Exemestane (Aromasin) for another 2 1/2 years. I like to think the cancer is in my rear view mirror and generally, I feel pretty good but then I go for my annual mammogram and get recalled. I go tomorrow for another mammogram and ultrasound on my left breast. My lumpectomy was on the right side. My oncologist tells me that they screen people with my history much more thoroughly but I can't help worrying. What if it's a recurrence? My husband is my rock but I don't want to upset him talking like this..... I know people here understand.

flashlight

MountainMia, Well said....just beautiful. Tearful seems to be my normal. Good luck to you!

moth

such a throught provoking topic - I'm a year past the end of treatment. At this point, I think it will never be over. It's not that I obsess about it all the time, but otoh it doesn't stray far from my mind. I went back to school last Sept while still finishing up rads. On one hand, school keeps me super busy and studying and focused on things other than my disease. Otoh, I'm studying nursing and not a week goes by where cancer doesn't come up either in my clinical patients or in my theory courses - so it always pops back into my brain.

I'm also trying hard to maintain my healthy living & keep this thing at bay initiatives. On days when I'm dragging and not wanting to exercise or not wanting to prepare the healthy meal, or not organized enough to get my proper sleep, I need to think about *why* I had decided it was important to do it in the first place. Plus I was diagnosed with osteoporosis at the end of treatment and need to take daily supplements plus shots every 6 months so there's these endless little reminders of not being a carefree, take my health for granted person any more.

And the doctor's appointments never end. Follow up, check up, blood tests, screening this, screening that, plus mixups with dates that don't work, endless being on hold with medical offices to book/change and work around my school and clinical schedule... it just seems something that my health will from now on always demand time and attention from me and that is a change.

I'm looking forward to reading more from others. So many interesting experiences.

moth

hey sistahs, did you see the post in another thread about this book? Looks really good.

The Undying catalogs the unceasing losses of a breast cancer diagnosis

https://www.npr.org/2019/09/17/761214595/the-undyi...

edj3

I ordered it--it's something I need at this point I think.

kber

I've decided to start counseling - behavioral cognitive therapy, to be precise. The idea is to learn some immediate "coping" skills other than denial and avoidance (I'm really good at those, already) to help deal with post treatment anxiety. I'm not feeling desperate, but I guess if I've learned anything this past year, it's be proactive about your health and treat little problems aggressively before they become big ones.

edj3

I'm in therapy right now too, cognitive process to be precise. Hard but in the long run I hope it helps me.

Scrafgal

My sentiments exactly Moth...I. am going to order the book too! I thought that I was weird for feeling the way that I am feeling. I feel br better since reading this thread.

Scrafgal

My sentiments exactly Moth...I. am going to order the book too! I thought that I was weird for feeling the way that I am feeling. I feel br better since reading this thread.

flashlight

Hi Kber, I started the Livestrong program Tuesday. It is going to be a workout! I am the only one who has breast cancer in a group of 7. 4 women and 3 men. I didn't realize you can repeat the session after 12 weeks. It is going to be good for me mentally and physically. Its a little bit of a drive, but worth it.

https://www.livestrong.org/ymca-search

MountainMia

flashlight, that's great. There isn't a livestrong program near me. However, I've arranged to start back at my gym in October. Likely I'll also work with a personal trainer in a small group, too. I did that before when I was rehabbing my knees in 2016. I worked with the trainer for about 5 months and it made a huge difference for me.

PiperKay

Kber, my diagnosis was last November as well, and I'm also TN, so there's not much else to do a year out, at least not after I have my first post-BC mammogram next month. I see my RO for a follow-up tomorrow, then who knows when I'll see her next. Probably never. I guess I'll find out tomorrow. I also see my lymphedema specialist tomorrow, because yes, I have lymphedema. And the radiation really aggravated it. And the surgery caused the lymphedema. So I'm mad at the surgery. But the breast cancer caused the surgery. So, well, I'm really, really, mad at the breast cancer.

At the beginning, I kept a notebook of questions to ask, appointments, side effects, etc. I very intentionally did not keep a diary or journal of feelings. Guess I didn't want to remember them once they were gone because they were very scary at times. And of course, how could I ever really forget? For the first couple of weeks after diagnosis, "I have breast cancer" kept running through my mind when I couldn't keep it out. Now, that doesn't happen as frequently because, really, maybe I don't have it right now. Maybe the surgery, chemo, and radiation knocked it all out - for now. So how do you describe yourself if that's the case? I HAVE breast cancer? I HAD breast cancer? I SURVIVED (so far) breast cancer? I MAY have breast cancer? None seems right to me.

And I've also gotten some other health concerns taken care of. A hysterectomy! So much fun, but really a breeze compared to what I've been through. And in 6 weeks, I'll be able to have sex with my husband for the second time in a year. Tried it once between chemo and radiation... You can probably imagine how it went.

So, maybe now that the physical side of cancer is on the back burner (sort of), it really is time to take a look at the mental and emotional side effects. Everyone around me keeps saying, "you look great." I rarely feel great, though. And as MountainMia said, I feel like I've aged several years in this last 10 months. I want to feel like I did before, and I want to believe that I CAN feel like I did before. Is that even possible? Maybe looking back at this a year from now I'll laugh because I sounded so depressed. I sure hope so.

Bravepoint, I hope your news is good from today's appointment.

Wishing everyone happier thoughts, peaceful sleep, and good health.

Anne

MountainMia

PiperKay, THIS: "So how do you describe yourself if that's the case? I HAVE breast cancer? I HAD breast cancer? I SURVIVED (so far) breast cancer? I MAY have breast cancer? None seems right to me."

Or as one man asked me, "Are you beating it?" Variations on this come frequently of course. I HAVE NO IDEA!

I have no idea how to describe myself.

PiperKay

The one thing I strongly dislike is saying that I'm sick. I'm certainly not sick with cancer right now. I'm sick OF cancer, but the things that are wrong with me now are the result of treatment, so I feel more injured than sick. Or more accurately, I feel damaged. Maybe like someone feels after being in a car wreck or something. "Are you beating it?" It's not a competition. It's a lifestyle.