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Husband dealing with Tamoxifen needing to vent

Hello everyone!

My wife was diagnosed with Stage 2A in June 2019, so we are coming up to 4 years. She has had a lumpectomy and follow up surgery, chemotherapy, radiation and now hormone therapy (taking Tamoxifen). My wife also has co-morbidities including thyroid cancer and Type 2 diabetes with complications (nephropathy), and fatty liver. She injects herself with insulin every day. She is 47 years old now, 43 when diagnosed.

We thought things would be getting better at this point, but my wife tells me that her current hormone therapy has been the worst experience of all. At one point, she was taking Exemestasine (don't think I spelled that right), and said it was absolutely awful. She was prescribed but stopped taking Lupron.

I sometimes feel I am going crazy with stress. I am 49 and a supervising lawyer where I work, and we have 2 young girls ages 8 and 10. Luckily the children seem ok and my older daughter in particular is excelling at school.

About every month or two my wife melts down and we wind up having vicious arguments. I try my hardest to tell myself "its the medication making her do that", but too often I take the bait. Usually I repress my feelings to spare upsetting our children. I am starting to find that having repeated hostile exchanges will wear on you over time.

I suspect she is complaining and gossiping about me to her in-laws, as I notice they treat me different now and seem less friendly.

I am a practicing Christian and wouldn't ever leave my wife, but must admit the thought has crossed my mind in difficult moments. Our marriage hasn't been the same since June 2019.

She tells me she feels just awful a lot of the time, and I believe her. She has chronic pain and she must often take rest breaks. It seems she has developed some stiffness in her knees too. I love her and feel so sorry for her. If you can believe it, her own sister turned her back on her after the diagnosis. Their mother had died of cancer, so maybe it brought back painful memories.

She often complains the doctors don't understand or are dismissive of her fatigue and complaints. I believe her.

I think she also suffers from depression and anxiety. She just gets mad at me when I suggest she should see a counsellor. I think she has gone to see a social worker at the hospital a few times but not recently.

My family hasn't always helped. In particular, my mother thinks my wife should be over it and back to work by now, and insinuates that if only she would "think positive" everything would be ok.

I'd love to hear from anyone for any thoughts, comments, suggestions.

Just needed to vent.

Comments

  • wondering44
    wondering44 Member Posts: 247

    Dear Vent,

    Have you been diagnosed with cancer?

    Have you received a diagnosis after experiencing your mom pass from it?

    Have you been subjected to hormone blockers that change your body (i.e., man boobs, lower sex drive, provide you with erectile dysfunction, make you emotional, affect weight, bones, mental health, etc.)?

    Do you live daily chronic pain from treatment options that you take in hopes of not having a recurrence or Mets?

    Have you been dismissed by doctors for concerns while you combat fears of recurrence or Mets?

    Have you considered not telling your wife to seek out therapy for your dissatisfaction with her current dilemmas and sought therapy for your dissatisfaction with your wife's cancer rollercoaster?

    Take Care.

  • alicebastable
    alicebastable Member Posts: 1,933
    edited May 2023

    @Mods, can you move this thread to whatever the one is for caregivers, if that still exists? Someplace where women who have or had cancer don't have to see it since it's EXTREMELY triggering?

    ETA,this is why the thread category needs to be at the top of the topic, not buried in tiny print! How are we supposed to know what threads to ignore?

  • harley07
    harley07 Member Posts: 247

    Vidal - your wife has a lot going on health wise and you have a lot on your plate as well. Is there someone you can reach out to through your church or medical providers that can put you in touch with a counselor. You and your wife both need a way to vent independent of each other and find ways of dealing with this. I think most of us would agree that Cancer changed our relationship with those we love. As you know, Dealing with major health issues puts an incredible strain on a relationship.

    I wish you the best

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    This post is in the correct section but as alicebastable notes, tiny print makes it somewhat difficult to notice.

    Vidal,

    Harley’s suggestion about seeking professional help is a good one. Your post is very honest and I hope you find a way to work on your relationship. Between your wife’s bc dx and her co-morbidities she has far more to deal than you do although I acknowledge the stressors this has created for you as well. While I have sympathy for you because diseases touch the whole family, it is your wife who has to deal with it first hand. As for your mother? If she can’t be a positive force at this time then she should say nothing at all. Just getting over it and thinking positive is not how it works for most of us. And yes this was extremely triggering. Again, I sympathize but as a bc patient , as most on this site are, I wish I’d never read it.

  • vidal1993
    vidal1993 Member Posts: 57

    This is Vidal.

    My sincerest apologies to all of you. It was never, ever my intention to cause or compound anybody's suffering.

    If it means anything, the visceral reactions have helped me understand a little more about what she is going through and that should improve things for us. Quite right—no matter what I'm going through, it is nothing compared to what she experiences.

    Once again, I am so very sorry.

    I leave it to the moderators to ensure it is in the correct category (I think it is) or to restrict its dissemination.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Thank you, vidal for acknowledging that. I hope you seek counseling for yourself because the stressors you are experiencing are very real and need to be addressed . Many of us already feel guilt over burdening loved ones with our medical situation and resultant issues which are often ongoing. If we could wave a wand and make bc vanish we would but the reality is that despite how fluffy and pink bc has been made to look, it’s anything but that. I am stage IV and my family has had to deal with this for almost 12 years (yes, I am lucky). I know there have been rough patches for them too but these things happen , medical issues that is, in all families. Sorry but my guilt over having bc has risen a bit today. It stinks all around.

  • harley07
    harley07 Member Posts: 247
    edited May 2023

    Everyone is entitled to their opinion. This is in the right section and the section is for caregivers to post

    Everyone is entitled to how they feel. Illness touches the entire family. For me this post was not triggering. I had stage 1 BC so it’s not what I think about every day. While this forum revolves around BC the rest of the world does not

    What do I think about every day? My adult son who has an incurable, life threatening illness and will likely pre-decease me. I find this much harder than dealing with my BC


    Given the post is in the correct forum and the subject line clearly identifies the topic, it appears several of you read the post looking to start a fight. Interesting way to use a forum designed to help others


  • cowgirl13
    cowgirl13 Member Posts: 765

    Vidal, as a starting point to making things go better, I strongly suggest that you get therapy for yourself and not focus on how your wife is not coping. Sorry, this is so strong but you have to take the lead here.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Harley,

    I can’t speak for others but starting a fight is the last thing I’m looking for. While true that the rest of the world doesn’t revolve around bc, you are doubly correct in saying that this site does. While we have threads that have nothing to do with bc, this wasn’t one of them. Yes, it is in the correct section but the way active topics is formatted it’s not as easy/obvious to spot when skimming as it previously was. So, I apologize for being hasty in reading a section I should have avoided . This post may not have been triggering for you but have a bit of empathy for those who may already feel badly about the effects bc has on their families and relationships. There are many of us who are simply not in a position to just get over it.

  • harley07
    harley07 Member Posts: 247

    @exbrnxgrl - You are very wrong that I have no empathy for others. I simply stated my feelings along with saying everyone is entitled to their feelings and opinions.

    I do agree the forum headings are difficult to read, however the subject line was easily readable. You posted that “I’d wish I’d never read it”. Any time we click on a post it is our choice to open it, read it and comment or not. I’ve had to remind myself of that more than once. I just thought some of the responses were unduly harsh.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,640

    Your self control is commendable. Unfortunately,I did indeed make a regrettable error. BTW, I am very sorry to hear about your son. Many of us understand as we too have an incurable disease.

  • alicebastable
    alicebastable Member Posts: 1,933

    Harley, I'm having a difficult time navigating the new site. I tend to open any thread that's on the first page, because I'm not yet used to the uncategorized listing, exacerbated by my horrible eyesight (those surgeries will be this summer, one on the anniversary of my lumpectomy). I, too, was stage 1 for all of my cancers, but it happens that this is the time of year when I have a LOT of tests and scans and doctors appointments, so yes, I found the post triggering because it brought back a lot of emotions I keep tamped down most of the time. I'm happy for you that you don't have these issues, but I find it sad that you'd make negative comments to or about those who do, particularly on this site where we come for peer support.

    Vidal, I hope you can get help with how you react to the many legitimate health issues your wife is dealing with. Yes, you posted in the correct place. It just happens that the new site is more of a work in progress than we'd expected, and emotions are running high these days due to our frustrations with it. Good luck to you AND your wife.

  • harley07
    harley07 Member Posts: 247

    @alice - I’m not sure why you think I made negative comments. I said we are all entitled to our opinions and feelings. I said ‘for me’, the post was not triggering. And I found it odd to see such harsh responses when Vidal came to this site for support.

    The layout of the new site is less than ideal. I’m sorry you are having a rough time, but I do understand and have certainly been there and continue to be. I wish you the best possible outcomes on your eye surgeries, scans and tests.

  • weninwi
    weninwi Member Posts: 742

    Vidal,

    No need for apologies. I read your posting as asking for help. I agree with cowgirl's suggestion that you take the lead and seek out therapy/counseling for yourself. You mentioned your wife has seen a social worker in the past. My experience of social workers is that they have a different skill set from therapists. I'd go to a social worker for resource referrals, but not for psychological therapy/support. Your faith community would be another place to turn. Many faith communities have intercessory prayer groups, whose ministry is to pray for the needs of others. Keep reaching out.

  • obsolete
    obsolete Member Posts: 333

    Hello Vidal, thank you for your most sincere & eloquent update. Without apology your feedback is most welcome here where all feelings and expressions are validated. Mrs.Vidal is apparently using her energy to express herself in the only manners she knows how within her limitations.

    If I may suggest seeking out second opinions with allopathic, integrative & naturopathic healers, it's vital Mrs.Vidal's experiences & needs are "seen & heard" by more compassionate professionals. An integrative team with pain mgmt, such as an integrative oncologist, accupuncture therapist and/or Chinese medicine/herbalist or CBD/cannabis therapy and a Reiki Master, those of whom would not typically diminish Mrs.Vidal's true self.

    When caregivers are being faced with extreme emotional pain, relationship growing pains & turmoil, together with stress from a demanding career, it is easy to misdirect focus when heavily bombarded from many directions. There are online videos for practicing relaxation techniques (yoga, tai chi, various meditations, classical music, sound therapy, acupressure, nutrition etc.)

    Mrs.Vidal's deep-seated feelings of abandonment by blood (sister) together with possible PTSD are excruciatingly difficult, thus it will take time and work to heal. Also other family members could benefit from spiritual support & life coaching themselves to heighten their sensitivity and empathy skills.

    A compassionate professional Life Coach may also prove helpful in dealing with unexpected warranted feelings. Caregiver's fears are truly valid as the entire family unit feels the emotional burdens of BC disease, not only limited to the cancer victims.

    You collectively are surrounded by feminine energy, so please use it to your advantage by tapping into these pure energy fields in further developing your feminine selves. If one practices seeking more deeply within their Divine for spiritual guidance, it will also serve to strengthen your divine feminine family bonds.

    Also continuing to express your love daily and reminding her regularly how beautiful she is, inside and out, will help you to continue showing your own inner beauty & strength.
    Hugs and Blessings are sent to you and your family.

  • tb90
    tb90 Member Posts: 279

    Vidal: I am so glad you came here to vent. That is the single most healthy way to address these issues so that you can be the best support possible for your wife. You have acknowledged her pain and challenges while also acknowledging how difficult this is on you. You are also important and valuable. She most likely wants you to get the support you need while she is unable to provide this. We cannot be everything to anyone. It takes a community. And BCO should be the community to support you. I am sorry for some of the responses you received but amazingly, it also highlighted what an amazing husband you are. Rather than becoming defensive, you apologized (completely unnecessarily) and reframed this into a way to better understand the emotional issues of having breast cancer. You have every quality to become everything your wife needs you to be.

    There needs to be support groups for family members living with cancer. Please check for this in your community. And take your mother!

    Please continue to reach out for support as I believe you have won everyone over and will receive great support here now.

  • wondering44
    wondering44 Member Posts: 247
    edited May 2023

    Vidal,


    I am speaking for myself here. Cancer was not an easy road for me or my spouse. While I attended therapy, my spouse kept it all bottled up with a smile to allow me to have my emotions without guilt. After a time when I realized he was affected and holding it in, I asked if he'd like to vent to a therapist. He chose not to share with a therapist. We recently discussed him not talking to me about all of it after I thought we had moved past it. I was hurt by his choice not to share his feelings. He finally said he didn't share because he didn't want to hurt my feelings or add to any guilt I may have over it. I guess it was a bit of a catch-22. So, we are doing our best to share our feelings without guilt.


    My spouse is very open about women who show their emotional sides (mental breaks). He told me that women are typically built emotionally, and it is natural for a woman to react emotionally (he meant this as a compliment to women). He doesn't understand men who think women are a lil crazy when they become emotional because it should be expected and understood. I love that about him.


    He and I were built and raised differently, which didn't make it easier for either of us during my cancer rollercoaster. However, I am genuinely grateful to him for the smile he wore for me to allow me to have my cancer rollercoaster.


    There was so much more between us that I didn't share. It was hard, and it still challenges both of us.
    I posted my original post to have you try to look at it from her shoes. Cancer is a lot to deal with physically and emotionally. Each person will need a specific amount of time to work through it; some may work through it quickly, while others may take years to move past it. Everyone is different in handling emotional trauma or grief; perhaps your wife may need more time to work through it.


    While I don't know your situation and can only guess from your post, I read that you both need to vent and need emotional support for the rollercoaster. Just food for thought...try to take Mom out of it and see if your wife can take your in-laws out of it. I can't imagine it helps much for either of you to have insecurities about discussions with the in-laws. My husband and I agreed years ago that if we needed to vent about one another, it must be with each other or only with someone in a solid marriage that could provide us adequate feedback for us to work together on.


    Lastly, while I 100% agree with seeking support, if you didn't consider how your wife would feel if she read this post, please consider it. I have written intimate posts but shared them with my spouse (only my writing. I did not share any responses because they weren't mine to share).
    I hope you guys find common ground to begin working toward one another rather than away from each other. The right therapist can be a Godsend.


    P.S. If you wonder if you are alone in this, I can guarantee you are not. You could ask others here to share their personal stories with you as a caregiver or patient to help you find answers.

  • emac877
    emac877 Member Posts: 648

    @vidal1993

    I also read from the headline and your post that you were honestly seeking help and a supportive ear from someone in a similar situation. I sincerely hope you find that. I'm not sure I have much else to offer except to say that I will pray for you both and that you can find some support from other spouses going through a similar situation. I am certain that you are not alone in your situation and I commend the love you are showing for your wife in seeking support and solutions.

    If it helps, I couldn't talk to a counselor either though it was suggested to me more than once. That did offend me when people suggested it even if it came from a loving intent. I think had I been married I might have considered going with my spouse and discussing the issues we were having and how this was affecting both of us. To have someone suggest that I go alone just pissed me off. Mostly because the suggestions usually came from people who had never been through what I had just been through so I tended to take it as a criticism. I found help here, connecting with others who have been through a similar situation although I do admit the change in platform has made that more challenging lately. In any case may you both find the help and peace you are looking for.

  • salamandra
    salamandra Member Posts: 723

    If this feels out of character for your wife, then dig deep, get counseling yourself, consider all the loads she might have been lifting for years with you barely or not at all aware, and do what you need to to do take care of yourself well enough to take care of her. Be open to the fact that there's something deeper underlying the arguments and be curious about what it is even if the process to get there feels hurtful and unfair.

    If this feels in character for your wife, then… also dig deep, and remind yourself that this is the person you chose to spend your life with, shortcomings and all, and it is not fair to expect chronic medical problems and pain to bring out the best in her. Do what you need to do to do not engage with toxic arguments, and maybe work with a counselor independently to think about the role that you also played in these relationship dynamics.

    "Usually I repress my feelings" - reframe this. Not expressing every emotion you have in the moment you have it is just adulting and adult management of feelings. It is ok to let one person at a time express big feelings, and attend to your own feelings later and decide what follow up to do. A counselor for you could be helpful to support your own emotional management, triaging, and deciding how/when to express difficult feelings to your wife

    Has your wife asked her doctor about toremifene, lower dose tamoxifen, and/or foregoing hormonal treatment (which is a valid choice)? Maybe a second opinion consult to review options and risks? If she is willing and you go with her and back her up that it's having a destructive impact on her quality of life, doctors are more likely to take it seriously (this is a sad but apparently true fact that doctors take female patients' pain/symptoms more seriously when a man is vouching for them…).

    And keep your mother far far away. That is some toxic bs.

    Can you take some FMLA leave from your work, or even intermittent FMLA, to help create some more time for you and hopefully decrease some of the stress? Send the kids to an extended sleepaway camp this summer?

  • vidal1993
    vidal1993 Member Posts: 57

    This is Vidal again.

    My sincerest thanks to all of you who responded. There were so many thoughtful and intelligent replies.

    I apologize again to anyone who was "triggered" by my post. The guilt survivors feel is something my wife has mentioned many times. I wrote that post simply because I needed to somehow express my thoughts and feelings. As many of us unfortunately know, friends and family eventually forget about the diagnosis or they don't want to hear any more about it after a certain point.

    This week-end will mark the 4th anniversary of my wife's diagnosis.

    I have decided that for the time being I will not seek counselling, but rather simply try to improve communication and make a concerted effort to just "be there" for her a little more and see where that goes. If we do seek a counsellor eventually, it will be with her rather than alone.

    I agree that to do otherwise might drive us apart as one of the posters suggested. At times I have been so hurt and upset. One of the posters said the right counsellor can be a godsend.

    I think my wife has to some extent been in denial. We've been through so much. In 2016, we had a stillborn son. And now her sister has abandoned her.

    I am not blameless. Too often, I let work get in the way. Its almost impossible not to. Yes the girls have to get to College but I guess I could delegate more at work. Even 4 years later I am still learning how to try to juggle everything, my work, caring for her, the girls' needs.

    One of the posters made an interesting comment re: "What if your wife read this?" Indeed I have sometimes wondered whether posting like this is a form of marital dishonesty. I find though that just writing my honest thoughts helps.

    I will add I have encouraged my wife many times to join this forum. She is however intensely private and inclined to regard her diagnosis as an embarrassing secret. I have told her that I joined it so I could read and learn about other experiences. I still hope she will.

    I liked Salamandra's comment about having a man with you at the doctor. One of COVID-19's unfortunate effects for us was that I could no longer accompany her to appointments. She also mentioned a substitute for Tamoxifen. This is something I will investigate. I've mentioned to my wife that some women decide to drop hormone therapy entirely and maybe that is worth considering.

    Once again I thank you.

  • obsolete
    obsolete Member Posts: 333

    Vidal, so sorry you lost your baby & it's so sad some souls may sobb over trauma indefinitely. Grief and abandonment are such heavy losses which further causes our minds to be very busy adding stress. However, to be present to heal from higher consciousness, our minds must be somewhat open & blank without our usual daily busy thoughts.

    Please be open to forgiveness in the mind for it holds much power. The spouses of BC patients are also victims of poor circumstances. There is no blame here, even though it's a most difficult task to ask ourselves to forgive (oneself). But it's important as we all go through our many growth stages.

    Please know it is you and your BC patient who actually hold the power, NOT any potential psycho-therapists who anyone might wish to consult with. It's been my experience
    patients can easily leave each formal psycho-therapy session with painfully open wounds until their next follow-up session a week or month later, which can sometimes be a counter-productive prolonged hurtful & expensive process with the wrong professional.

    We collectively are the ones we've been waiting for. The right-sides of our brains may simply need some reawakening (or a tune-up or calibration). Any old habits and addictions can be neutralized if people can find the sources of their problems and if the person truly wants to embark on healing from within. We all each hold our own power.

    You need not blame yourself for your work duty obligations. It's apparently your personal mission on Earth to create legal changes. Also please understand many indigenous tribes and the Iroquois Confederacy (oldest living participatory democracy) hold ancient 7-Generation philosophies:
    In our every deliberation, we must consider the impact of our decisions on the next seven generations.”

    https://7genfoundation.org/7th-generation/
    For example, lawyers are gifted with special skills, talents & foresight, and thus it's every lawyer's personal duty to share their gifts with Earth's civilizations. However, many careers use left-sided brains exclusively, which sees everything as logic & ego, detached from consciousness negatively draining one's own energy.

    One solution would be to hike in the woods with Nature & connect with wildlife and trees for rejuvenation. It will allow our own frequencies to connect with Nature all around us.

    An escape to a health & wellness retreat center for energetic healing modality or quantum healing hypnotherapy session might be a good vacation option for both you & Mrs.Vidal as a potential getaway. Such destinations are ideal for reopening the brain's right side for energetic healing, imagination and creativity to tap into one's "higher self" or consciousness. It's the beneficial healing of the mind-body-soul connection. Best wishes in your family decisions.

  • aprilgirl1
    aprilgirl1 Member Posts: 743

    @Vida1993 , have you or your wife discussed this with her oncologist and her diabetes doctor ? Perhaps there is some link between her medical treatments / medications that could be improved/ changed and have less side effects. Tamoxifen is for premenopausal women . There are other meds for post menopausal women .

    Finding a good talk therapist would be a great idea. Individually or as a couple. Don't give up ! I have a lot of empathy for her and for you.

  • lw422
    lw422 Member Posts: 1,375
    edited June 2023

    @aprilgirl—FYI, Tamoxifen is a hormone (endocrine) therapy drug. Tamoxifen is used to treat breast cancer in both premenopausal women and postmenopausal women. It can also be taken by men who have breast cancer. Some breast cancers use estrogen in the body to help them to grow.

  • aprilgirl1
    aprilgirl1 Member Posts: 743

    LW22- yes . My point is, make sure you discuss your concerns and the side effects the patient and her husband believe are caused by tamoxifen with their oncologist. There are other options besides dropping all hormone therapy. It's challenging as the patient in this case has other health issues. Quality of life is important but everything is a balance of risk vs reward .

  • vidal1993
    vidal1993 Member Posts: 57

    This is Vidal again here.

    Things have been improving for my wife and I. She will continue with Tamoxifen for now but discuss dosages and possible substitutes with her oncologist in September. We may even change oncologists. My wife has long complained she is too theoretical and they don't connect or lack personal chemistry.

    My wife's case is complex—she has both breast and thyroid cancer, Type 2 diabetes with complications. She takes insulin every day.

    I also know she saw a psychiatrist for childhood trauma (very difficult relationship with her own mother) long before her diagnosis.

    She's amazingly strong considering everything, what with her sister now abandoning her.

    Someone suggested we need our endocrinologist (diabetes specialist) to take a closer look at the interaction of all the medications and we will.

    This is a great community. On this site, there is a very helpful podcast for spouses that I recently listened to.

    The most important insight I've gained from the responses to my original post is that I need to take a closer look and accept responsibility for my own response to all the stress. I've also learned that I'm not just imagining the crushing weight I often feel.

    We are taking a brief holiday this summer down to the Coast which should be a nice change of scenery. Looking forward now to the summer months—we tend to do better in the warmer weather.