Things I don't tell anybody
Comments
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Amica - I honestly had no idea how difficult it is for you all in Canada! I guess we sure do take things for granted down here, don't we? I was fortunate - I had a super connection who put me in touch with one of the best, and I got in right away with him.
I'm so sorry about your cat. But i do know how you feel. They are such a comfort to us when we need it most. My cat is somewhere around 15-18 (she was a rescue) and I am dreading the day. Know what I mean?
Listen, you can always PM and we can talk directly on the phone. I have had trouble here connecting with others survivors. I was a Stage 1A so didn't need radiation or chemo. I went to a local tri-county support group but I couldn't identify with them because most were having treatments. And i didn't want them to resent me. So I stopped going. Now my therapist says I need to go back because even though our treatment isn't the same, we have all gone through the same thing so our feelings are the same.
Thank goodness for this website. Everyone here knows how we all feel and what we go through.
Does your dad live with you? Are you the only family members there? Please feel free to send me a PM and let's see if we can hook up by phone or email.
Ann
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Yup, I know what you mean, Hapa. I was not super healthy but love fresh fruit, veggies, etc. I'm not a vegetarian but I am careful about what we eat, getting exercise everyone. My mom was 104 when she died - of natural causes. she never took any pills - and I mean never. They gave her a baby aspirin every other day when she got to be 103 and had to go to a nursing home, and she called me complaining about "all of the damned drugs they are giving me." There is no ILC in my family anywhere. My brother died of IDC 3 years ago but they told him that Agent Orange probably contributed to it. So where the hell did mine come from? This sucks, plain and simple. I keep waiting to wake up from this awful nightmare. But here I sit, concave chest, scars from one end to the other, growing Buddha belly, seeing a therapist who says I suffer from PTSD, taking Zoloft every day because I can't function without it, and then people tell me how lucky I am because I was "only" a Stage 1A. Yeah, thanks a lot. How come I don't feel lucky?
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Snickersmom,
Stage, grade or type doesn't matter. Cancer is cancer and it sucks equally for all of us. There's no such thing as a "good" cancer, and there's certainly no "luck" in getting it! Nobody should minimize your suffering because you didn't have chemo or radiation. The physical and mental scars are just as real regardless of treatment protocol, and you should be able to grieve your diagnosis without feeling guilty or be shamed for it.
Hugs,
Vickki
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Snickersmom - my mother is 70 and there is not a thing in the world wrong with her. The only times she was in the hospital was to give birth. She's not on any drugs. She thinks exercise is bad for you, I shit you not. This woman couldn't cook a healthy meal if she wanted to, and I mean that literally - she's one of those people who will buy things that are marketed as being healthy but are really full of sugar or trans fats and anything she cooks is drowned in salt. I agree with your therapist, the aftermath of breast cancer is the same for all of us. We all have to put on a brave face and go out and function in the world like nothing happened when really we are tired, angry, and scared. And I am so tired of people who have never had cancer telling me to "stay positive!" I always want to be like "I know how you feel, I don't want to deal with my mortality either".
I swear to god I'm going to rip this port off my chest with my fingernails one of these days. A year of herceptin infusions? I about fell out of my chair when my oncologist told me that. I'm about halfway done. And unless recommendations change, which they might, I am looking at taking my last aromatase inhibitor around the beginning of 2024. It's depressing to think about how much farther I still have to go.
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I'm not minimizing Amica's problems with the Canadian health system, but I also live in Ontario (in a small town in northern Ontario) and my treatment for my BC (as well as my naughty appendix, my uterine polyps and my broken arm - all within 4 years) has been excellent. I used to live in the US - if I still lived there I'd be bankrupt by now. I don't know if I've been exceptionally lucky or if Amica's been exceptionally unlucky, but the care shouldn't vary so much within the same province and it shouldn't be up to dumb luck for you to get a medical team that'll work with you. I can see why Amica is so upset.
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Snickersmom, thanks you are so kind. I"ll PM you later!
I hope you have a good day and the heat and humidity are not too bad!take care,
Amica
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Amica - can you maybe take a few days or a week to travel to the US for a second opinion? Do you still have american insurance? When I went to MD Anderson I just told them where my path slides were and they use an outsourced company to gather them. A stage IV diagnosis involves lifelong treatment so you want to be sure it's really necessary. Ibrance isn't as bad as chemo but I'm told it has cumulative effects. I'm so sorry you have to deal with all of this. It really seems like its luck of the draw in Canada and you drew a crap hand.
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As you go through treatment, especially chemo, how does one mourn or grieve the life they gave up to fight cancer
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Nisha, excellent question that I’m sure many of us didn’t realize at the time. As I went through treatment i was simply trying to manage life as usual. Which was probably a mistake. Depression hit me after my reconstruction surgery. There was also a death but. I did see a grief counselor and took effexor for a while. I’m still coming to grips with essentially starting over on many things important to me and finding that some of what is important has changed.
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Nisha - I honestly have no idea. When I went through chemo I was so busy trying to get through it that I didn't take the time to process much. My MO and pretty much everyone at my cancer center preaches sticking to your normal life as much as possible, but I feel like that's bad advice. Your life isn't normal anymore, it never will be again, and it's better if you take some time to adjust to that. I'm doing much better after surgery, probably in part because I had six weeks off to decompress. How is your chemo going this round? Doing any better than before?
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hi hapa-
The ones that say to keep life as normal as possible have not gone through what we are going through. Sometimes I wish MO’s would do chemo just so they can get first hand experience with it. It is absolutely ludicrous to live life normal again. Nothing about what we are doing is “normal.” Putting poisons in our body to fight a disease. That’s the thing I have trouble comprehending..... putting poison in our body and the doctors are just okay with it. I had my 3rd round 11 days ago. Prior to it, my husband and I researched a lot what to do and take before, during and after chemo to minimize the side effects. Honestly, it worked pretty well. Out of 3 infusions, the 3rd one was the best. So hopefully we will continue doing what we did and it’ll work for the rest of the infusions. Don’t get me wrong, there’s still discomfort, but better. I hope you’re doing well
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Nisha
I went through chemo just focusing on staying healthy, rest, exercised some as tolerated, basically put my old life on hold. My surgery was after chemo and during recovery it hit me hard that it had been 6 months and I wanted my old life back. I had many physical limitations put on me by surgeon and felt like I couldn't even do the stuff that kept me sane during chemo, I sort of had a breakdown at this point. I ended calling susen g komen hotline and was able to speak with a cancer therapist on the phone. It really helped me a lot since I was feeling like no family or friends really understood. The therapist mentioned to me that breast cancer is one of the hardest cancers to deal with as far as how many aspects of your life and your "self" are affected both physically and psychologically. You can just call and talk to a therapist for free when you need it, and its free.
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A cancer diagnosis will change your life and that’s just the truth of it and in so many ways - physical and emotional. My initial diagnosis 11 years ago was rough but after radiation (no chemo) I happily went on with my life and honestly did not ever think it would come back but since cancer does what the f#*k it wants I now have a stage IV diagnosis. I hate it and unless you have experienced it you don’t really understand the emotional pain. I am fortunate with a loving husband and supportive family and friends, but not all,I have lost some relationships due to a lack of empathy on their part. My life can’t be the same but I get out of bed and go on every day the best I can. Part of me doesn’t want to look back and regret not living life the best I can. I had a rough start yesterday but for me I knew a long walk with DH would help and it did. Ended up having a lovely evening together drinking wine by the fire pit table and enjoying a nice dinner together. It’s also always so poignant and my DH and I shard an emotional moment with a tight hug and some tears too. Nope, life isn’t the same and never will be.... No easy answers for any of us and of course we are all different in our physical and emotional response. I do have access to a wonderful counselor and psychiatrist where I get treatment and they have been immensely helpful. I’m sort of rambling here - I just want to wave the magic wand and take away all the cancer and pain it causes. Hugs and love and if you can do one thing that brings you joy today no matter how simple.
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Shazza I am sending you a private message. I live in Spain and may be able to help translate for you post op if you want me to depending on where you are exactly.....but very often the nurses in Recovery wards (called re-animacion here so don´t let that scare you!) speak enough english to communicate with you....you are lucky if they offer fast reconstruction in Murcia as I had to battle for mine over 6 years in a different Region in Spain!
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KatyK - I'm so sorry about your stage IV diagnosis. I can't even imagine how hard that must be. I look forward to the day when I can start putting this behind me but for people who are stage IV that's not even a possibility. I think you're right, only other stage IV folks can understand. I think that's why the stage IV board on this forum is restricted to metsters only, and I think it's a great policy. I hope the Ibrance and Femara work for you for a very, very long time.
The day I came back from leave for my BMX, our admin assistant came back from leave as well. She has been dealing with tachycardia for a while now and finally got a diagnosis. Dilated cardiomyopathy with fibrosis. She's looking at 5 years to live, maybe 10 if she's lucky. I'd guess she's around my age (early 40s), divorced with three kids, two still at home. She's selectively telling people and I'm one of the people she told. I heard her crying in the bathroom yesterday and just waited for her to finish and leave until I came out of my stall. I know there's nothing to say to make her feel better at this point so I'm not going to even try.
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Well, I had a good few days but the anxiety is ramping up again over my pending radiation treatment. I so don't want to do this. I'm doing it at a different cancer center and I feel ok about the rads itself but the process of getting all set up to go there is such a pain in the ass because I'm still on herceptin and so I need to get my infusions there too. I keep telling myself it will all work out and things will be fine.
In the meantime, work has quickly thrown a bunch of stuff on my plate which I'm supposed to finish before I go out again. Except that I'll be out three days next week for my simulation, and then gone for six weeks for rads starting the following Monday (tenatively, I'm trying to push it out a week). And my work, it's just so boring. It's all details, minutia, writing reports and checking boxes. And I just don't care.
I went to the break room to try to get my head back together, and I ran into one of the ladies that works on the test floor who had triple positive BC (same as me). She found hers when she reached up to scratch an itch (same as me). She had 20 lymph nodes removed (I had 18) and hasn't had any problems with lymphedema, which made me feel a lot better, because she's older than me and diabetic. And she's almost 5 years out. We chatted and it was helpful. Only other BCers really know what you're going through. I hated all the reassurances from people who didn't know wth they were talking about.
When I was diagnosed I had my bone scan and CT scan and they found three little nodules on my lung. Two of them were 1mm and the third was 4mm. Too small to biopsy. They could be nothing, they could be cancer. I had them rescanned before surgery (hell if I was going to let them carve me up if it wasn't going to get rid of all the cancer) and this time they only found the one, which came in at 3mm. They called it "stable". So I still don't know if those were cancerous or not, if I'm really stage IV already and doing all of this for nothing. The nurse practitioner said they'd keep scanning them every three months for a year and if they didn't grow, they'd call it good. But I think I'm done scanning them. There's no result that can tell me definitively that they're not cancer, and if they are I'd rather not know for as long as possible. So I think I'll just skip the rest of the scans and try to not worry about it unless I start having symptoms.
Every time I mention these lung nodules to my husband, he says "I didn't realize you had lung nodules". Every time.
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Husband Translation: I don’t want you to have lung nodules, I love you, I can’t fix it. Therefore you don’t have lung nodules.
You have been through so much in a year— you are almost there now. It doesn’t matter if you cross that finish line looking good or gasping with the street cleaners right behind you. You will finish and then you can start to heal
Take care.
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hapa, I agree with kassy on the husband translation. Question if you don’t mind sharing- why will you be out of the office for 3 days for simulation and then 6 weeks for radiation? Travel? Mostly I’m curious as I worked full time, simply leaving at 4 for my 430 radiation appointment. No need to explain or share if you don’t want to. Each of us goes through these treatments differently and I'm not well versed on triple positive.
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I live in Phoenix and I'm doing my radiation with a doctor in Texas. I got a bad feeling from the doctor here and was originally going to refuse rads but decided to get a consult with a doctor who was active in research on breast cancer radiation. That went much better so I deccided to do my rads with him despite the inconvenience. I work in a factory so I'm pretty limited to what I can do remotely.
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Hapa,
Good for you for doing what you need to do. Sorry that you can’t get the treatment you need more conveniently. All the best.
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Hapa--keeping you in my thoughts during this challenging time.
HUGS
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Hapa
I know what you mean. I hate my body now too. I wasn't a big fan before but now it's so much worse.I can't even look at my chest right now and only glimpse when I bathe.then I cringe.physically.i call them frankenboobs, they are scarred,ugly, don't match and right now got an object sticking out each side.i feel physically ill whenever something brings to notice the numbness where my nipples used to be.
i think if I had been able to keep the nipples it might have been slightly different but right now feel like I got two misshapen freakish looking balls on my chest that don't really belong.
I'm not going to be positive about anything because right now I have nothing positive about. So much has happened after both before during and after surgery that I've pretty much given up at this point. The misery never ends why would I want to add to it.
Try explaining to people that it doesn't matter if you end up with years or a lifetime of NED, NOTHING is going tone the same as it used to be ever again.
Also speaking as someone making decisions single,no it doesn't seem to be easier. I am making decisions based on and hoping for a future i might not have. At this point I'm not sure I'm going to survive to and I'm not talking about the cancer killing me caus life is doing a fine ole job of doing that itself. But Given a choice I would have liked to have somebody to share the decision with.
You have the right to feel what you feel and if that's not positive then it's not positive. You have every right to be sad,angry and questioning if quantity of life is more important then quality.
I guess I will just say what many have told me: make the choice you can live with and don't look back with regret no matter the result.easier said then done,I know.
I hope you find your path and it's a good one,that brings you back at least close to where you want to be.
The others are right though. Sometimes life just sucks and there's nothing to be positive about.
Thinking of you.
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I don't want to have any more scans. I don't want to go back to the doctor. I don't know what will happen to my dog so but I want to commit suicide. don't want to live like this. I think about sitting in my car in the garage and letting it run but I just can't do that to my dog. what a cancer patient has to deal with is just too overwhelming.
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dazzlingeagle- I understand the treatment exhaustion. Please tell your doctor how you are feeling. And please work w him or her to find emotional support. Your dog needs you and there are more people than you realize who do too.
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DazzlingEagle - this stuff is so hard, I know. Hopefully your despair is short lived. "You can always kill yourself later" has been my mantra a few times when I've wanted to give up or refuse a treatment. Usually the feeling passes but sometimes it takes a while. I'm away from my dog right now and he is probably heartbroken - he isn't nearly as fond of my husband, who is taking care of him right now. Be aware that if you tell your doctor you're thinking about suicide he/she may be legally required to send you for a psych evaluation, which could end with you being admitted to a hospital or mental institution, which will probably help neither your depression nor your dog. If you want outpatient help for your depression, tell the doctors you're depressed but be wary of mentioning the word suicide or killing yourself to a doctor unless you actually think you might do it. Some anti-depressants may help you get over the hump if waiting it out gets too hard to bear. If anti-depressants aren't your thing, I suggest a nice long hike with your dog any time you're feeling really lousy. Exercise and nature can do wonders for your mood.
Jo - wondering how you're doing lately. If I hadn't been able to keep my nipples I was planning nipple reconstruction, is that an option in Canada? Hopefully the two sides are settling into the same size (approximately). My two sides are nearly done baking and they're still quite mismatched.
Nisha - wondering about you too, are you still thinking about quitting chemo? I always made a deal with myself during chemo that I only had to make it to one more round. After that, I could think about the next one. But to think about taking five rounds or three rounds was too hard so I just thought about taking one more round. Usually by the time the next one came up, one more round didn't seem so bad.
Amica - I hope thinks are going ok with your treatment, assuming anything has changed considering how slow things seem to have been moving. I read some article about using steroscopic radiation in combination with chemo or targeted therapies to try to cure oligometastatic patients. You had mentioned that being part of your treatment plan and you weren't excited about it but I think it might be a good idea despite the liklihood of side effects.
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Hapa, thank you for your post. I am still pretty down but I'm okay.
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DazzlingEagle, I recently lost a family member to suicide. Please stay with us. This disease can be beyond awful for some of us, but I hope you feel better soon. I just wanted to say that we are all here for you, and we are wishing you the best. (((HUGS)))
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hi hapa-
I think about quitting chemo a lot, but I’ve made it to 4 rounds! I only have 2 rounds left and my last one is December 11! Yes, I also think ok one more and then i somehow make it to more than one. Thank you for reaching out and for the words of encouragement. December 11 can’t get here fast enough.
I hope you’re doing well, as well. How many do you have left
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Nisha - I'm glad to hear you're doing better. For some reason I felt a lot better after round 4, like maybe I was going to make it to the end after all. Only two more to go! I finished chemo a few months ago. Had surgery and now I'm trying to make it through radiation. I'm getting "comprehensive radiation", which means they're zapping my scar, chest wall, supraclavical and inframammary nodes, and the axilla (whatever's left of it). It seems like so much but two doctors recommended the same thing (though one wasn't going to zap my scar because she wanted to "respect my reconstruction" but frankly I don't even know if I'm going to keep these things right now. I've had two of 30 rounds and I already itch where they're zapping the axilla, but maybe that's psychosomatic because it seems early for skin reaction. Best of luck with the rest of your chemo! You got this!
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Hapa- I used a large tub of aquaphor during radiation. Slathered it on twice a day. It helped with itch, tightness and overall skin condition. Didn’t prevent that angry red look i was sporting by the end but it did help how my skin felt.
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