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Just Need to Vent

Sorry if it sounds like I am whining, but I really just need to vent and if the post rambles on I am sorry about that as well (chemo brain is not fun)

I guess I really just need to vent to someone, anyone really. I am just so tire of pretending like everything is okay and my life does not feel as though it is imploding. I will say I am truly fed up of people asking if I am okay and before I even answer start telling me I will be okay....I mean let me actually answer you before YOU start telling ME how I am! I hope that I am okay and I pray every day that the stuff I am going through will work and destroy the cancer. But you know it is all a crap shoot, we can only hope and pray that we have done all we can to stop it, but there is always that chance that it did not work.

I do feel lucky that I have not had as bad of side effects from treatment so far compared to so many others in this community, so I do not want to offend anyone with this post. I also know that this could be much worse...and I worry about that as well.Scared I guess my anxiety is just going through the roof right now. New aches and pains showing up that just seem to add that much more worry about did it spread or is it just a normal side effect? The doctor does not seem to be worried and says it is just a side effect of treatment....trying to believe him.

It is not just the cancer, the fatigue, and side effects of treatment. I have a business that is greatly declining and we could potentially lose our only means of income and health insurance. So now I have to worry what is going to happen if we have to close the doors for money and how I would be able to continue my treatment. Not to mention the sense of failure of that happening. My husband and I are constantly fighting because of all the stress of the cancer, the business, and then he is still grieving from his father passing away from liver cancer. Just crappy!

All this stress is just really getting to me and bringing me down. I have not really cried very much since the cancer diagnosis was confirmed back in August 2018, but it seems as every little thing sets me off now. I work really hard at not crying in front of my husband or letting my son see me cry so sometimes it just comes out while I am driving or when I am trying to go to sleep at night. I am working really hard not to let this get to me. I tell myself to keep fighting that God would not put more on me than I can handle, but I just do not know how much more I can handle.

Once again sorry for the whining, but I needed to get that out!

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Comments

  • salamandra
    salamandra Member Posts: 732
    edited April 2019

    Hey Bookworm,

    I'm so sorry. I'm glad you came and vented. This illness has a huge mental/emotional component that I think is NOT adequately supported by many medical practitioners.

    Do you have access to any mental healthcare support, maybe through the cancer center? If you are open to seeing a psychiatrist, there are some meds that make a huge difference with anxiety. A therapist for a weekly check in and emotional support and tools could be really helpful too. This kind of healthcare is just as important as physical health care.

    I think it should be ok to cry in front of your husband. What is family for if not people you can be weak and vulnerable with? He might need instructions from you on how to respond when you're crying, if he's not so strong on his emotional/social skills, but he should want to be supportive.

    Sending good vibes!

  • hapa
    hapa Member Posts: 613
    edited April 2019

    OMG Bookworm, you're only 35?!?!?? This is a soooo much to deal with. I agree with Salamandra that it's okay to let things get to you sometimes. I know everyone says you need to stay positive, but it's okay to feel down and cry sometimes. I think you need to let yourself have those moments. And I know you need to keep your head together to run your business and your life, but maybe just set aside some time every day and allow yourself to get upset and worry and cry.

  • bookworm14
    bookworm14 Member Posts: 71
    edited April 2019

    Salamandra,

    Thanks for posting. I was on anxiety meds before the cancer diagnosis. However, when added with the chemo it makes it harder for me to focus at work so I discontinued the meds until chemo is over. My insurance will cover weekly visits with the therapists, but right now is just about finding time. I work about 40-50 hours a week, then chemo, then fitting in lymphedema appts, blood work, and my family. I hope that just by posting this may help me work through it. I do think that too many people do not place enough significance on how mentally exhausting this all can be. My husband, while awesome, does not handle emotions very well. He will try to comfort, but you can tell that he is upset. I hope that you are doing well. How are you handling the Tamoxifen

  • bookworm14
    bookworm14 Member Posts: 71
    edited April 2019

    hapa,

    Thanks for stopping by on my venting post. Yep 35,but now 36 (hopefully many more to come). Really unexpected since there is absolutely no history of breast cancer in the family. Staying positive in the beginning seems pretty easy, but now there are some days that I feel pretty down in the dumps. Those days just keep getting more and more common. One would think that most of the crying would be at the beginning, but I really did not. Maybe I am making up for lost time or it is just everything going on at once. All I know is that I am just tired of it all right now. My car is probably the place I cry the most just to get it out before I get home.

    My next stop is radiation....how did that go for you?

  • hapa
    hapa Member Posts: 613
    edited April 2019

    Well, the good news is that my depression peaked before radiation (after BMX, before rads. I had neoadjuvant chemo) and I had no treatment related anxiety during rads. The bad news is that I am still dealing with the side effects in terms of tightness in my pec and axilla, and I have developed some capsular contracture. Rads itself made me really tired. I am surprised that you're getting comprehensive rads with only 1 node effected and a 2cm tumor. I had multiple tumors throughout my breast, two of which were RIGHT behind my nipple, and I had nipple sparing BMX. Plus, I had three nodes affected, and that was AFTER chemo, and I still had residual tumor in my breast. I almost refused rads. Still not sure it was the right thing to do, but what's done is done so I try not to think about it.

    This stuff is so hard.

  • moth
    moth Member Posts: 3,293
    edited April 2019

    holy cow, you're like a superwoman Bookworm! I seriously cannot imagine working through chemo and worrying about paying for health care and having a young child. I was barely capable of watching netflix and keeping the couch warm for 7 months last year while I did chemo. (I'd been a student when I was diagnosed & took the next 2 semesters off. I'm in Canada so healthcare is paid for). Rads burned but were otherwise tolerable. I had cording afterwards but it dissipated a couple months later.

    I think at the beginning emotions can be easier to handle because there's stuff to do and you just go into a 'get it done' mode. But after a while reality starts to creep into the mind and you also just become exhausted with holding it together... I would suggest you try hard to make the time to see a counsellor. As much as I know it seems like a time investment, it's possible that this will invigorate you and help you focus better at work and sleep and that will end up saving you time and making you feel better.

    But also just take the time to really be proud and amazed of yourself. You've been through & accomplished an awful lot since last July. This isn't minor, it isn't like getting over a broken leg...this is major, life changing stuff and you will all be forever changed by it.

  • bookworm14
    bookworm14 Member Posts: 71
    edited April 2019

    hapa,

    Did they put you in therapy at all for the tightness? I had heard that radiation would make someone very tired. I hope that you are able to get the tightness handled. The capsular contraction has to do with the implants correct? What can be done with that?

    They decided to go all out on treatment due to my age, BRCA 2+ and due to some areas in my sternum that lit up in the PET CT scan. Also, all the scans and tests they did were wrong on how big the tumor was and that there was lymph node involvement. The IDC ended up being over 2cm and then 4mm of DCIS that we never knew was there, and then 10mm of macro metastasis in the lymph node. I guess they decided to throw everything at it. The first thing that was mentioned at diagnosis was surgery first, then other treatments depending on final biopsy. . I do not know why they decided to go that way other than at first it looked to be no more than a Stage I with a 4mm tumor and ended worse Maybe to cover all the bases?

    Completely agree...this stuff is tough, but here is to hoping for that light at the end of the tunnel for all of us.

  • bookworm14
    bookworm14 Member Posts: 71
    edited April 2019

    moth,

    I think anyone going through cancer has a bit of a superhero in them. How else could we continue to get knocked down by the treatments and then get back up for the next. 😁 sorry to hear that you had to postpone classes...I’m sure it take a bit to get back in the grove of things once you are out for a bit. Best of wishes moving forward on that when you are ready or if you are already working on it. Ah cording.....I had that after my surgery. It was pretty painful, but as you said it does eventually resolve. That statement you made about reality setting in is pretty accurate. I hope you are doing well after your treatments.

  • bookworm14
    bookworm14 Member Posts: 71
    edited April 2019

    For everyone posting...thank you! Being able to get this out has really made me breathe a little easier. I hope that you all will vent when you need to. Have a great night and a great tomorrow!!

  • salamandra
    salamandra Member Posts: 732
    edited April 2019

    Hey Bookworm,

    Come vent any time! If not here, then where!!

    I've had some really annoying side effects with tamoxifen, the main one being terrible fatigue. I had blamed radiation but I started tamoxifen at the same time and now I'm wondering if it was the tamoxifen all along. But I'm trying different brands and hoping for the best. There have been so many times though I've wished I were independently wealthy and could just ditch my job. Working through treatment is no joke. I wish none of us *had* to do to it, and it makes me so angry how health insurance is tied to employment. UGH :(

  • bookworm14
    bookworm14 Member Posts: 71
    edited April 2019

    Salamandra,

    It would be so much easier for people if we were able to get some form of disability for early stage cancer so that we could concentrate on getting better. While our insurance is wonderful, you do have to work in order to keep it...really sucks when you just feel like laying in bed all day (kind of like today). I wish there was a way that we all could get on a form of disability strictly for cancer that allows us to keep our employer insurance at the same time. Maybe something will eventually happen with that. I had heard about the fatigue with the radiation, but not the Tamoxifen. Well, heap on the fatigue I guess! You would think that they would try to find something that works with the added benefit of boosting energy as we are all worn out from the other treatments! My Onco said that I cannot start Tamoxifen until after all treatments are done....wonder why that is? Here's to hoping that you can get some energy back soon and not be so fatigued.

  • hapa
    hapa Member Posts: 613
    edited April 2019

    Bookworm - I started physical therapy two weeks after BMX due to tightness from my ALND. I couldn't lift my arm over my head enough to even get radiation. The very first PT got me to almost 100% range of motion, it was freaking amazing, I think I had pretty much the best physical therapist in the world. Unfortunately she retired and moved back to madagascar or something (seriously) but my new one is pretty good too. I just had a few sessions after rads and got exercises to do at home. But no matter how much I do those exercises, the tightness always comes back. The capsular contracture isn't too terrible - not really painful and frankly it makes my one boob look better - you can't see any rippling from the implant because it's squeezed so tight, lol! But anyway I don't like these implants so I'm having my PS put in wider, flatter ones in about a month and she'll release some of the scar tissue then.

    I think the stuff under the sternum are why they're giving you rads. It is necessary if there's cancer in those nodes, as they are not removable via surgery. I'm really annoyed that they gave me ALND if I was going to have rads anyway. Though I did have a chest CT recently to check on some small lung nodules and the CT showed that a couple nodes were missed and are still in my axilla. Yay, I still have some nodes! We gotta take the small victories, ya know?

    I'm glad you're feeling better.

  • bookworm14
    bookworm14 Member Posts: 71
    edited May 2019

    hapa,

    It is the little things that can make you smile! It is odd that if they knew you were going to get rads that they would do an ALND. Hoping that the area that lit up is just inflammation and not something else. Pretty worried about my lymphedema getting worse with upcoming rads. Hope you are well.

  • CarolAnnieLumpLump
    CarolAnnieLumpLump Member Posts: 54
    edited May 2019

    Keep swimming Bookworm. Everything you described a month ago was exactly how I felt too. BC is overwhelming and you are juggling a lot of stress right now. I see your doing rads now too. Keep slathering cream on your skin, drink lots of water and rest when you can. Above all cry when you need to, tell yourself you’ve been through a lot and it will get better. I am 6 months ahead of you in treatments but I didn’t have chemo. Plus I am now 60 years old. I am beginning to feel like myself again. You will too. 🙏🏻

  • meow13
    meow13 Member Posts: 1,363
    edited May 2019

    My SIL called and she is taking tamoxifen just started she is 2 years post mastectomy. This SIL had DCIS and a very tiny invasive IDC, she asked me if my mo told me that my breast cancer could spread to vital organs like the liver. I couldn't believe it she didn't know that and said the tamoxifen was to treat stray cancer cells. She didn't know that, wow! Why the hell did she think BC was confined to the breast, why did she think I was so worried about the cancer. She really takes the cake, doesn't listen when we talk. I mean I spent hours talking to her about the cancer so dense!

    Another SIL got endocrine cancer from taking tamoxifen. I told this one to be careful but she knows it all. I am done with cancer conversations. What an idiot.

  • bookworm14
    bookworm14 Member Posts: 71
    edited June 2019

    CarolAnnie,

    Thanks for posting that. Some days are better than others, but I just try to push through. Glad you are starting to feel better

  • bookworm14
    bookworm14 Member Posts: 71
    edited June 2019

    Meow13,

    Sometimes the palm just meets the forehead or say “here is your sign”!!

  • m0mmyof3
    m0mmyof3 Member Posts: 9,368
    edited June 2019

    Bookworm, vent as much as you want, it helps! I was 37 when I was diagnosed six years ago. Stinks that you have to go through this your age. If you want to talk, I'm here for you. Although I don't have a child, I have three wonderful furbabies that I call my "kids", would have had four but, I lost my oldest furbaby a year after I was diagnosed. Between my beloved angel kitty Charcoal and my Sheltie, Jackson, they saw me through the worst of the fight. Now I have Jackson, and two beautiful girl kitties Princess, a black kitty like Charcoal and my precious brown Tabby, Grace. If you would like to talk, I'm here off and on during the day.

  • bookworm14
    bookworm14 Member Posts: 71
    edited July 2019

    M0mmyof2,

    Sorry for not responding sooner, just busy with life I guess! Venting does help sometimes...I actually decided to begin seeing a therapist to help get all my feelings out. Super sorry to hear about your loss, but glad that you had your babies to help you through. I hope you are still doing well.

  • m0mmyof3
    m0mmyof3 Member Posts: 9,368
    edited July 2019

    Thanks Bookworm! It’s good that you are taking a positive step to deal with this crap!

  • m0mmyof3
    m0mmyof3 Member Posts: 9,368
    edited October 2020

    Venting time again! Lost someone who I thought was a friend. She got her nose all out of joint because I didn’t agree with her on a subject. I basically told her that we are all humans and have our own views and we will never agree on everything. So instead of talking it out with me, she all but called me shallow and ended our friendship. Guess she wants to let a difference of opinion destroy a nearly 20 year friendship.

  • m0mmyof3
    m0mmyof3 Member Posts: 9,368
    edited January 2021

    So tired of always being in the wrong! As always when it comes to my husband, he’s always right and I’m wrong! I am close to giving up and walking away, the only thing stopping me is the pets. They are the only reason I stay.

  • minustwo
    minustwo Member Posts: 13,044
    edited January 2021

    Mommy - sorry your DH always has to be right. I hate what this does to you. And I don't think just turning & walking away does any good. It's been my experience that men are more wrapped up in having to be right because of: a) their egos; and b) their need to control; and c) the need to fix things instead of just having back & forth discussions.

    Unfortunately I expect Covid makes it much worse. I have a friend who calls me several nights a week just to vent. She used to golf & go to the gym & shop & have lunch with friends, but now she & her DH are stuck at home together and the pot keeps getting closer to boiling over.

    I'll be keeping you in my thoughts.

  • m0mmyof3
    m0mmyof3 Member Posts: 9,368
    edited January 2021

    Yeah, it’s gotten worse since hubby has had to work from home. He acts like I was put here to wait on him all the time. He hardly pays any attention to anything but his job. Does almost nothing to help out and when I ask for help, I get snapped at. If I get a phone call from my family or a text from my best friend I hear nothing but sarcastic comments.

  • minustwo
    minustwo Member Posts: 13,044
    edited January 2021

    Have you been married a long time? That might make change even harder. But maybe you could start by setting some small borders. Like between 8 & 9p is your "me" time and no matter what, you are NOT available to do anything for others. Can't remember the ages of your children,but are they old enough you could park yourself in the middle of the couch with earphones on and read a book and ignore everything else? Or you don't do dinner dishes until after you take a walk.

    Sigh - it is REALLY hard. I'm of the generation when women were raised that their primary job (and indeed their only important job) was to make their DH happy. And 'chores' were NOT a two way street. I expect you've seen enough of my posts to know that I haven't believed that in a long time.

    Funny aside. When I married my second husband he HATED yard work, which I loved. We made a deal that I would take care of the lawn & gardens and he would mop the kitchen floor (which I hated). We live in Houston where things grow jungle size in a week. We were married over 20 years. I did the yard every single week - either on the weekends or after work. The kitchen floor maybe got mopped twice a year. I did sweep because I really didn't like stepping on crumbs, but I had turned over that responsibility for mopping in my mind & I wasn't going back.

  • nopink2019
    nopink2019 Member Posts: 384
    edited January 2021

    MinusTwo, I like your determination. We haven't had our maid since Covid started (I'm a terrible housekeeper and DH doesn't even understand the term). Only a few people in the house, just to drop in, stand & talk for 5 minutes. DH said he'd vacuum. Ongoing 2 months now. I ask him almost daily, but I get a shrug or "sure, today". Occassionally I pick up dust bunnies and dog hair. I've thought about hiding his slippers so he has to walk on the floor and know how awful it is. I REFUSE to tackle that, along with almost everything else. Drives me crazy!

  • minustwo
    minustwo Member Posts: 13,044
    edited January 2021

    Way to go NoPink. Somehow they MUST step up to the plate. I like the idea of putting his slippers on the other side of the house.

  • m0mmyof3
    m0mmyof3 Member Posts: 9,368
    edited January 2021

    We’ve been married 16 years and no kids. We wanted kids but it never happened. He was never like this but the last few years he’s become really lazy. I am at the point I am going to quit asking when he’s going to do stuff and find a way to get it done myself, like I did with the new exercise bike we got.

  • minustwo
    minustwo Member Posts: 13,044
    edited January 2021

    Mommy - yes I saw on another thread that you put together the exercise bike by yourself. GREAT job. Should have mentioned it before. Hope you enjoy riding.

  • m0mmyof3
    m0mmyof3 Member Posts: 9,368
    edited January 2021

    I did. Tried it after I was done and loved it, though my knees weren’t happy. I once worked in a factory where I learned by doing.