Rant- my take, cancer sucks

Chickadee123

So my 35th b-day present was my bilateral mastectomies to remove my stage 3, grade 3 cancer. I am post op, surgery was April 2. I had an 8cm tumor plus 9 more in involved lymph nodes. I got a MRSA infection from my left Jackson-Pratt drains. I am really starting to feel like I am battling some serious depression. My insurance has been dragging me through the mud, trying to pass all this off as being pre-existing with no prior issues ever. I have a 5-year old with autism and a 2-year old. My DH has been trying to be supportive and working extra hard. My chemo was supposed to start Wednesday but has been halted due to non payment from insurance. My hair has been falling out ever since my surgery and I am struggling hard with serious self image problems. I have chosen not to go with reconstruction as I am terrified of putting anything back in my body that could cause further illness or more cancer. I used to have so much self confidence, I am a nurse. And yet, here I am Looking like jaws took chunks out of my sides, massive winking scars and looking more flat chested then my two year old. I have never cared what anyone thought I looked like and yet I cannot stand to be in public anymore. I know in the back of my mind it’s just just me self projecting my issues but I feel so lost. I am still trying to work through the whole anger, grief, etc stages and am failing. I didn’t give myself the time I needed to mourn the diagnosis and losses before they happened and now I can’t seem to find a way to do it. Everyone keeps telling me I am so brave blah, blah, blah but inside I am a disaster. My surgeon keeps telling me that it will ‘get easier’ and that I will feel different in ‘6 months and in a year’. I really don’t have anybody I can talk with about this. Certain people in my family feel it is their place to tell me what I should or shouldn’t be doing. I want to scream. I get so irritated-people forget they say these things but they get to go home, close the door and wake up to their same life and I get to wake up to this. It gets better and it gets easier, right

Betrayal

Chickadee123:

I can identify with what you have expressed even though we do not have the same BC dx. BC does suck and you are in need of the support you can find here; we can identify with you since we also have had BC.

If you were to post this under Emotional Crises the Steam Room for Anger I think you would receive responses that would help you deal with the emotions you are experiencing. I hope you will reach out on this site. There are so many helpful people who will offer the support and comfort you need.

Scrafgal

Chickadee,

I am sorry to hear about your struggles. I wanted to say two things:

First, you are not alone and your feelings are understandable. Cancer tries to take everything away from us physically, emotionally, financially etc. It might not seem meaningful, coming from your surgeon, but please take it from me and others here: It does get better, in time, but it takes a lot of effort...and a lot of time. Right now, you just need to focus on healing physically. However, when the time is right, you might want to seek support from a group or therapist. If you are being treated as a cancer center, they typically could refer you to someone there. You might not need a lot of sessions, but just enough to get you on the path to wholeness.

You are young enough, likely, not to know a lot of women your age who are dealing with this, so that makes things feel even more isolating, perhaps. Keep coming back here. You will find others like you (your age and family situation). Look around the threads.

Mods, perhaps you can point Chickadee to some useful threads.

Best to you, Chickadee. Hang in there....

Anonymous

I am so sorry you are here with the rest of us. Cancer does suck, big time, along with insurance companies. There is nothing “pink ribbon" about actually having to take this ride

On a more positive note, there are people who do medical claims advocacy who may able to remove the burden of fighting with your insurance company.

And I go to a hospital cancer center, they also assisted me with navigating the finances of my care. In addition to the counseling and support mentioned above

ElaineTherese

((Hugs)) It is hard to process cancer when you have children at home and other responsibilities to attend to. Do you have a nurse navigator at your breast cancer center who can help you with insurance and help re-schedule chemo? I also had Stage III, Grade 3 cancer, and I was blessed that my nurse navigator took care of all the scheduling. She also would have helped me with the financial issues if my insurance was a problem.

It's funny but cancer made me much more self-conscious in public as well. I never wanted the pity-stares of people who would look at my bald head and draw their own conclusions. "Poor dear; she's on her death bed for sure!" Before chemo, I made sure to get a wig I liked, and invested in little things (like false eyelashes) that helped me feel better about my appearance. The local cancer society might have some free or low-cost wigs or might sponsor "Look Good, Feel Good" sessions at your cancer center. I'd look into those if you're interested.

Right now, it might be best not to spend time with people who have ideas and expectations about how you should behave. They are an extra burden that you shouldn't be expected to carry. I can still remember one of my Mom's oldest friends lecturing me about how I could cure my cancer with some supplement she'd seen advertised on TV at my grandmother's funeral. If it hadn't been my grandmother's funeral, I might have socked her.

((Hugs)) Keep on venting here on BCO! (Also, I have twins with autism, and know that they are high maintenance.) Best wishes!

Moderators

Chickadee -- welcome to Breastcancer.org,

We're so very sorry for the reasons that bring you here, and for the rollercoaster of emotions you're managing. However, we're very glad you've found our incredible Community. As you can already see, we are made up of some of the best support around! Many members feel just the way you do, and are struggling -- but we're all here for each other.

In addition to the help and support you've received in this thread, we'd suggest you check out the Emotional Crises: Anxiety, Depression, and Other Emotional Effects forum to reach others who are managing difficult feelings.

We hope this helps and we look forward to hearing more from you soon!

--The Mods

Fritzmylove

Chickadee cancer is difficult enough without insurance giving you a hard time. I’m so sorry you’re having to deal with that. Everything you’re feeling right now is valid. You’ve already been through so much, and yet you’re still at the very beginning of your cancer story.

Your post hit home for me as we have very similar lives. 34 at diagnosis, stage III, 2 children, one with autism. I hope that you find support here. It’s a great group of people. I wish you well

rubyredslippers

I was 38. I had it again at 47. It's very very hard. I had to visit a Lymphodema Physio Specialist today, and I had the ptsd of having to enter the centre where I go for scans, have had biopsies etc etc etc, that I associate with so much trauma - that's hard enough. But then when she was talking to me about the chance I'm getting Lymphodema, I was just like, "oh I'm so sick of the worry of all this. It's just too hard" - and wanted to cry. felt low for the rest of the day, and now have a headache from the stress. I hate that I have this in my life. I hate that I have the worry of cancer every day. I hate that every bloody day I have to worry about it coming back again. We're too young to have this in our lives.

The sadness, the anger, frustration and fear are massive. I really don't have the answers. It's hard. it takes a lot of time. I'm two years out from treatment for a recurrence. I'm still struggling through that. Of course, for everyone else it's like ... it's over now, you've moved on, you look well. It doesn't work like that. They've moved on. It's yesterday's problem for them. It never goes away. I guess in a way you learn to live around it.

You're right that it's the people that haven't had cancer that make this harder - their expectations - how you manage your emotions, to be positive for them and so on. They don't understand. Only other people that have been through it understand. You need to find a safe place to talk about, or vent your anger and emotions. You can always talk here. Talk about your worries, and your anger or sadness. Or, you might find some other place. There is no easy way. All you can do is work through it, each moment. I know that the anger can be burning fury, like writing 10 pages of anger and your pen doesn't leave the page to pause anger. It's really hard. Nothing makes it easier, but time helps. Someone said to me once that the stress of this uses up a lot of energy. It does, i feel very drained from what I went though today. The Physiotherapist I saw is great - that's not what makes it hard. It's the fact that I have to deal with it. That it's this big bloody worry that I can't just get away from. It's tiring. It's like being the Linda Hamilton character in The Terminator - stress makes my Chemo Induced Cognitive Impairment worse, so I can't think of the characters name, even though I normally know it, and have watched that movie many times. But, she has to spend the rest of her life running. Thinking about this bloody thing catching up with her, finding where she lives, no matter where she goes. And that is so bloody tiring. That's how it feels to me. I guess in a way, I just find a space to say to myself, for now, I'm safe. i guess that means tomorrow I am too, so I'll just go with that.

Yogatyme

Chickadee, I’m so sorry you’re having to join this group, but you have come to the right place. Everyone has the experience of bc and the associated trauma. It really sucks that you are having insurance issues....getting through the treatment plan is hard enough without the added burden. You are right about others not getting what you are going through.....they have no idea that you don’t care what they would do or what they think you should do.....the reality is no one knows what they would do until they are there. You are there so trust yourself, get good information, reach out here and allow yourself to feel whatever you feel without judgment. Hoping for the best for you going forward.

Firecracker73

Hi Chickadee123, I just read your post today, and I see that it is rather old and the only time you've posted. I'm interested in how you are doing and would love to see an update from you. I can TOTALLY relate. I was originally diagnosed on January 20, 2017, at age 43 with stage 1, grade 2, IDC in my left breast, w/no lymph node involvement. My children were 5 and 7 at the time. Hearing those words changed my life in an instant. I will never be the same person I was before that day. In some ways that is good, in other ways it is not. I had anxiety prior to my dx, but I guarantee you now that I have full-blown PTSD. I opted for a DMX. Was told I did not need chemo or radiation. My tx team was so positive. "It was caught early, go live your life!" 14 months later, on my son's 9th birthday nonetheless, I was dx'd w/a regional recurrence to the lymph nodes on the cx side. It was a complete fluke but it saved my life. I underwent an ALND and my BS told me that 3 of the 13 nodes she removed were "bursting w/cancer". This wasn't supposed to happen! So off to chemo and radiation I went. They considered my recurrence a "tamoxifen failure". I started my journey weighing 155 pounds and ballooned up to 210. I now have severe neuropathy in my hands and feet, capsular contracture in the radiated breast and my only option for reconstruction is a DIEP flap. On my last day of tx, my husband asked me for a divorce: he'd been having an affair w/a girl from high school. He told me, "I didn't even realize it was your last day of tx". When I was dx'd w/a recurrence, his only concern was how it would affect his hunting schedule. I desperately wanted a 3rd child- cx robbed me of that possibility. I drove myself to all my tx's, I homeschool my children and work full-time as a therapist- however, I could not work during my tx's so I was off for essentially 3 years as I had to take off 9 months during my original tx due to major issues with reconstruction. My body looks like a butchered Thanksgiving turkey. You could play connect the dots from all the scars left by the drain tubes. I have ongoing cognitive difficulties, and financially I have exhausted all my resources. Mr. Wonderful didn't bother to give me a cent until he was court-ordered to pay child support in November (8 months after he moved out). I have been out of "active" tx for almost a year. It is SOOOOOO frustrating because people, including my family, look at me and think I should be fine and don't understand why I'm not. I am emotionally and physically exhausted all the time. I never had a problem w/sleep unto the big C came along. Now insomnia is my best friend. My heart literally aches at what my children have been put through (6 months prior to my dx, my younger sister was dx w/Stage 3 triple positive cx- we tested negative for everything). I'm pretty sure my children think that everyone gets cx. My family rallied around my sister, who stopped taking tamoxifen because off all the weight she had gained and is now 9 months pregnant at age 43). She just doesn't deal w/her experience. I feel so alone and have finally begun to get angry, perhaps because my initial dx date is quickly approaching. I've tried so hard to maintain an attitude of gratitude, but I feel like I have been nothing but blindsided since 2017. I feel like I am constantly waiting for the other shoe to drop. I feel like my job is constantly in jeopardy. Financially I am terrified that I am going to sink like the Titanic. I do see a therapist, I really wanted to see someone who was also a survivor, but unfortunately could not find anyone. I'm on anti-anxiety and anti-depressants- hell I think I'm on every med that big pharma makes! I am 46 and feel like I'm 90. BCO is my solace and comfort. The people on this site are amazing. I can't think of one aspect of my life that cx has not negatively affected. I'm single, I have no desire to date (how can I trust anyone after my husband of 13 years pulled the shit he did) and sex? I have ZERO sex drive. My breasts used to bring me such pleasure w/regard to intimacy- I can't even imagine what sex would be like now w/no feeling in what used to be my most erogenous zone. Like you, I used to be very self confident and self assured. And looking back, physically I think I was very attractive. Boy did I take that for granted! I have managed to lose a great deal of the weight, but I feel like cx has made me so physically unattractive. Do you know a woman tried to sell me a wig at a yard sale last summer?! There is not a day that goes by that I am not reminded of what I have been through, and continue to go through. Maybe I'll just take all the mirrors out of my house- if the bank doesn't foreclose on it first! I have to believe at some point, things will get better. Maybe when the nasty custody battle I'm embroiled in is settled, maybe when my hair grows back- I don't know. I am just so sick and tired of feeling like shit, being judged, criticized and misunderstood- especially by my family. I apologize for the length of this text. Just know that you are not alone. Far from it. I feel like I fought so hard to stay alive and now I am hanging on by a thread that is quickly fraying.

MinusTwo

Firecracker. We are here. We are listening. I realize maybe that's not active help, but BCO members will be here to support you. Recurrence with subsequent ALND certainly changed my life too. 5 years after active treatment, I'm sort of on an even keel again. Regular exercise has really helped. Hope you're limiting interaction with people who are negative or act like your issues are trivial. Wishing you the best in the custody battle.

Firecracker73

Minus Two- Thank you for taking the time to read my post and respond. I don't know why, but it made me cry. I just want one day in my life where cancer does not pop into my head. I have started to become very angry and emotional lately- likely because my initial dx date is approaching along with the fact that I completed tx and was blindsided with the request for a divorce on January 31. I try so very hard not to become angry about the cancer (I'm hot headed about everything else in life though!). My ex and I didn't have a great marriage and it wasn't that I didn't want a divorce, but perhaps just a few days or so to catch my breath before I had to deal w/another significant life changing event. I think that since I am not in survival mode, per se, anymore, I am finally beginning to cope w/all the emotions I compartmentalized about the divorce and my health finally. But I don't want to deal w/them right now either. My soul is tired and needs to rest, if that makes any sense. On top of it, I was a smoker (I read your post from earlier today so I know you can relate). I LOVED smoking, but as soon as I was diagnosed, I put them down and didn't think twice, until this past March when my ex manipulated my son into texting me when he had them on one of his weekends, that he wanted to live with his father and was willing to return to public school in order to do so (he was 9 at the time and he despises public school). That was the straw that broke the camel's back. I went across the street to my neighbor's and lit up a cigarette- it was like, hello old friend. Since then my CEA levels have been rising. I get scans every 3 months and my most recent scan in October or November was fine. As I suffer from severe neuropathy, I am on pain mgmt. The neuropathy in my feet and legs have gotten worse since the winter months hit. I also do offsite therapy, which means I go into the clients homes and schools to see them for therapy. So I am constantly going up and down stairs, carrying a backpack that weighs 17 pounds. The doctors seem mystified when I continue to have pain since I have been out of "active" tx for almost a year. My oncologist, though I love him dearly, has been vacationing out of the country throughout most of my tx and is too busy typing away on his computer during our visits to really pay attention to me. I found out my CT results from my pain mgmt. doctor. My oncologist then decides I need a PET scan (which his office scheduled and never bothered to tell me about. It was re-scheduled for this Friday. I cancelled it today. First of all I have an upper respiratory infection and she said if I start to cough while I am in the machine that I will distort the pictures, but secondly, I am tired of being poked, prodded, blah, blah, blah.) After reviewing my CT scan, my pain mgmt. doctor didn't think a PET scan was necessary: he feels the cold weather and my job are just exacerbating my neuropathy. I'm not having weakness in my legs or anything else- just pain in my feet that shoos up to about my knees. When I contacted my oncologist today, he couldn't even remember the real reason he had ordered the PET scan- he thought it was because of the CEA levels. I had to remind him it was because of the increased pain in my feet and knees and asked if he had even bothered to read my CT scan-which came back fine! But if I'm being totally honest, I'm terrified of being blindsided again. If the CT scan came back fine, what are the odds the PET scan wouldn't? I know I need to quit smoking. I'm sorry to rant. So I have to go for a blood draw on Friday and I see my oncologist in a few weeks- he is making me get another CT scan instead and based on the results I may have to get the PET scan anyway. I have a feeling I may unleash on him at our next appointment. When did you get to the point that you weren't constantly waiting for the other shoe to drop? And scan days are the WORST! The waiting and the unknown- I just can't deal with it right now. Maybe in a few weeks when the anniversary dates have passed and my sinus infection is gone. Any words of encouragement and positive vibes would be so greatly appreciated right about now. I apologize for the lengthy chest- I didn't realize I had that much to get off what if left off my chest, lol

MinusTwo

Oh I let it go out of my mind shortly after my reconstruction in 2011. But then I had a recurrence in 2013 - almost exactly 2 years. That turned out to be IDC, so chemo, ALND sugery, more chemo, rads, hercepin for a year. And so I took early retirement.

Finished active treatment in 2014. I still get blood test every 6 months because I can't get the Prolia shots w/o current calcium & Vit D tests. But I get the shots from my GYN and have moved my MO out 8 months to a year. I too have neuropathy, but mine is numbness (dead feet) - no every day pain. And lymphadema, but mostly truncal & breast.

It's not so easy to let go the 2nd time. I've solved the problem by scheduling every doc appointment & test w/in a 2 month period. The other 10 months I do a fair job of not worrying every day. I go to Silver Sneakers exercise classes twice a week and chair Yoga once a week. In the summer I add at least two water aerobics classes a week. While I'd rather sit in my recliner and read, I've found my mood is better if I'm participating in active exercise.

Rant anytime. I'm a firm believer that getting it off your chest (so to speak) is useful. Please do update us on your tests.

blah333

WHOOPS I WROTE ALL OF THIS BEFORE I REALIZED THIS POST WAS FROM 9 MONTHS AGO UGH

I was diagnosed at 35 and lost my breasts then too, no recon. Implants didn't appeal to me nor did altering other parts of my body with surgery to make mounds. I remember being so mad because I had two different people work on me, I still get annoyed - one side is perfect the other is more jagged, a residents' writing and has some flaws. But the two year mark hit and I am so used to it now. I remember seeing myself in the mirror recently and even noting I still look hot somehow this way. It is insane, didn't expect that. Of course in other lighting on another day I'll feel like whoa I'm old and corpse like now..... but STILL. It's possible to love your new body, you're in the roughest part of it right now! The more it heals the better you'll feel.

One thing that helped me was putting kineso tape on the incision lines (once the stitches dissolve, or a month after surgery or so). (or whenever your treatment plan/types allow and it won't hurt radiated skin etc). You basically cut two strips and put it along the scar line and leave it on until the tape starts to get ratty or peel up on its own (In about a week). You can shower in it, and it helps the scar line heal, fade, but also helps your skin heal in a way where the skin tissue will align properly as it heals and be nice and flat. The bonus is, while it is helping you heal, it covers the incision lines, so you can't stare down at them or overanalyze your healing process. When the tape gets frayed or peeling up, you take it off, and then in 3-5 days, put more on. Apply some almond oil and things like that during the tape break. As more months pass you will start healing more and more and -- to me having a flat chest feels totally natural now! I still have some residual anger because some of my ribs have been pushed out/jutting out from lymphedema and it's uncomfortable, as well as other negative feelings that get stirred up. It's natural. Let them pass but don't beat yourself up about them daily.

Your doctor is right - it does get easier. And weirdly enough, the 6 month mark felt like one corner (maybe months 5-10 seemed to have a lot of healing). My chest had some skin that was unevenly sewed together; I was shocked my body evened it out! Only within a few months too! I remember one side felt tigher than the other (in my back) and one day randomly I noticed that was gone. Don't underestimate your body's power to heal! It wants to heal.. it's its natural inclination to. But you do need to give it some tools to heal, like nutrition, and stress is certainly not beneficial. Sorry insurance companies are making things even worse for you. The fact they are trying to paint this as a pre-existing condition just tells you how evil they are and if you live in the US I hope you plan to vote in November, accordingly............

I hate the idea of people calling you (me) brave, people with cancer just go to their appointments and treat it, because if not we die. That's not brave, it's like being dealt a shit sandwich and having to eat it. However I did tell a friend going through this that she was strong, which I hope did not feel idiotic for her to hear. I use that word because I am not sure I would be able to endure the insane 14 months she is in the middle of? Sorry to tell you this but you are going to here A LOT more stupid shit out of people's mouths. A lot of it is cliche crap and some of it will just be plain ignorant. It can be tough.

blah333

Firecracker - I would continue to write on the boards here for support. Going through divorce just on its own is usually one of the top most stressful life events that people face. Cancer diagnosis is another! They are probably both in the Top 2! Your soul does need a rest. These are also financially precarious times; not to downplay your situation but a lot of people feel the same way as you right now, economically. It creates incredible amount of stress in the body. I would ask around on this site and type neuropathy in the search box/pain -- other women have this same issue and might have some tips for you. Or you can start your own new topic about it too. Hang in there. I'm sure some relief will be coming your way. But also take some time each day to treat yourself to a moment or small pleasure if you can. You can find a new "guilty pleasure" than smoking, like having a nice warm tea or something. Find some small ways to make your life more pleasant, something small like getting new sheets or a new body lotion. This advice must sound inane! But you need to ease your agitation and frustration and stress you've (rightfully) been experiencing. You can't solve these bigger issues at once (and an ex-husband will be a thorn in the rear for awhile) but you can try to make your day-to-day life a little smoother. I just think, starting small is better than nothing, then you can build momentum. I mentioned sheets/lotion - just things to make your body feel better but that are also restful (and soft - the opposite of anger). Make sure your bedroom is a peaceful uncluttered place. Rearrange some things if it helps. It can also be powerful to clear things (belongings) out of your life or physical space. There are a lot of small, inexpensive things that aren't super time consuming that you can do, like little favors to yourself.