Hi....need to vent.....too much going on...(long rant)

LJ-2
LJ-2 Member Posts: 1

Hi,

I'm relatively new to the caregivers field.    The wife was diagnosed with 1st stage, triple-negative breast cancer about 6 weeks ago.  since then, she has had successful surgery, just completed her localized(internal) radiation, and is set to heal for around 3-4 weeks before starting TC chemo(4 doses over 12 weeks)

All in all we are extremely lucky as to when it was caught, treatment so far and prognosis.  compared to a lot of you, she(we) don't even begin to scratch the surface of what many of you have been through and/or are going through.

However, I am a mess.   It basically started with her specifying that none of us in the family were allowed to say anything negative due to her fear of our words causing something to go wrong.   This, interpreted by me at least means no arguments, disagreements, questioning of judgement,etc....    I know this is not the healthiest approach, but as I am relatively low key, was hoping that we could fly under the radar, so to speak, and that after completion of treatment/remission/cure would then try to back her out to 'normal' behavior.

Her next problem is that she always thought of herself as a strong person(so did I), and her inability to stay rock solid(who can? under any cancer diagnosis) has created massive internal conflict in her, and makes me believe she has allowed herself to be the victim.    Of course, I can only sympathize and try to empathize with her diagnosis.   She has become either very wishy-washy in decisions(and speaks softly then) or rock-hard with no course for questioning.

An example of this is chemo.   Originally she was told she didn't need to undergo chemo, but her primary oncologist said she thought it was highly recommended(the chemo-oncologist has said that since it was caught early with no spread, but on the other hand it was triple-negative(more aggressive) that is could go either way, but he suggested it to raise her chances of no recurrences).  This caught her quite by surprise and she basically checked out of the meeting after that, and said she would NOT do chemo.   I believe there are two main reasons she is/was against chemo: 1) Her mother passed away from a highly aggressive luekemis(I forget the exact diagnosis) after only a short period after diagnosis.   This happened 16 years ago, and I'm sure the chemo she was on was extrememly nasty, and her mother said she would never have done the chemo if she had known how it would go for her.   2) my wife's chiropractor(who is fairly knowledgable in things medical) discouraged her from doing any chemo, but the family and I know that he is one who suggests lots of non-mainstream healing(and he and my wife are both very religious), and we do not agree with what he suggested as a primary method.

So, after saying no originally, when given time to think about long term(mostly for the grandbabies) she thinks logically and says yes to chemo.   However, this scenario has replayed itself 2 more times, even though the last time she hadn't said she was not going to have chemo.   She just recently said that she again decided to have chemo only after she saw(and asked) what was wrong with me - I've been feeling pushed closer to the edge(and if you knew me you would be surprised I could even say that)

As I have read here, it is common for patients to behave erratically, harshly,etc... to their caregivers.   She has never been mean to me, but does treat me as somewhat  incompetent in anything, and has treated me(per my feelings) more like the help than her husband.   I am 99% sure that this behavior is completely unknown to her and if I questioned her, she would be defensive as if I would be making it up(our relationship was not completely healthy in this respect even before the diagnosis)   In addition, between caring for her(I took over almost all cooking and shopping, as well as driving to almost all medical visits,etc...) and studying for a work exam I later failed, I have had maybe a couple hours of me time in 6 weeks.   When she 'caught' me playing a new computer game for an hour(and this is only the third game I have bought in like 20 years....believe me, I'm not a gamer), she complained that I was wasting time where I should be helping around the house.   Another aberration in her behavior was that she required me to refrain from cussing around her.   for the most part, that is totally appropriate and I could do with at least a little cleanup language-wise.   However, she will still get on my case for saying 'damn' ever.

 

In the meantime, during this period since diagnosis, my own personal and professional life have taken some major hits.   Work and health problems have been problematic at best.    I am fighting severe allergies, headaches, breathing issues as well as having severe sleep issues(mostly due to a new bed she wanted).  I am slowly trying to work at each of these issues, but all of these issues combine to make one miserable in their own right.   Even without my wife's issues, this would have been a rough stretch for myself alone.

Finally, I have a near non-existent family/support system.   The parents we have left are too old and confused that we don't want to burden them with her diagnosis.   My brother is unfortunately a non-emotional type that would have little to help out in this case, and his wife, who is usually a very helpful and concerned issue, stopped me cold the first time I asked her for help on how to deal with my wife and her issues.   She bluntly said she didn't want to take sides between the two of us, and wouldn't let me explain I wasn't asking for blame, but for help.    My wife's family is a mixed bag as well.   Despite not getting along well with her sister, I did talk to her once about her sister's behavior and to my surprise didn't instantly brand me as unsupportive.   I also briefly talked to my wife's two adult daughters about the same thing.   However, while being sympathetic when I talked to them, the few times they saw(the wife has been pretty good at keeping 'normal' while around them) any issue that she had with me, instead of getting any sympathy, they basically turned on me and suggested I wasn't being supportive enough.

 

To get back on track, I realize it is my wife who has cancer, not me.   I try my best to bite my tongue and not think disparaging thoughts.  However, again, per the standards of those cancer  patients here and everywhere, she has been very lucky.   I hate to think how this would all be going if she had a more serious condition or were in final stages.   Of course, I feel guilty that I am feeling any resentment, but I am only human.(altthough being OCD positive and having at least some mental issues about myself magnify my negative feelings about her, myself and our relationship/future).   I am also concerned about after 'cure'/remission, that she won't return eventually to her old self.   We have mentioned some face to face counseling, but  of course, she will leave that up to me as she is basically doing nothing on her own.   I am afraid that if we go to counseling, or even have a face to face, if I start, it will not stop til it all comes out, and that we will be in a much worse place than we already are.

This is my first rant(hopeful thinking that it could be the last), so I hope I get some cathartic release from it, and I know there are sympathetic ears/hearts here.   Not looking for a huge amount of sympathy(a little might help :)), but if there are any other thoughts of things to try besides talking to her or face to face counseling(since I know about those options) I am all ears.

 

thanks all,

LJ-2

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    First of all

    Welcome.

    I hope that the expression of your anxiety has helped. There is nothing easy or defined about categorizing. Every situation is different.

    Take care of yourself however you ended to. That is primary.

    You and your wife are early in the process and it is difficult to see the way ahead. Things may remain in flux for quite awhile. Please relax and go with the flow.  

    Counseling can be a wonderful idea even if it is just for yourself.

  • Catholic
    Catholic Member Posts: 86
    Rant anytime.

    Rant anytime.

    Im not a doctor or oncologist.  I always thought that Stage 1 meant that there was no chemotherapy.  I went to one of the initial meetings when my wife was diagnosed with cancer and the oncologist said something on the lines that if this was detected earlier, that they could have done a mascetomy and radiation and that would have been it.  Triple negative means your wife tested negative for estrogen, progesterone and HER2 receptors.  I dont know much about estrogen and progesterone receptors. My wife is/was HER2 positive and HER2 is a protein that promotes cancer cell growth.  So if your wife is negative HER2, thats good.  There is also a nottingham scale which tells you how aggressive the cancer cells are.  My wife has/had a nottingham score of 9 and the oncologist said that "90% or more of her cancer cells are dividing and moving".  You said:

    "Originally she was told she didn't need to undergo chemo, but her primary oncologist said she thought it was highly recommended(the chemo-oncologist has said that since it was caught early with no spread, but on the other hand it was triple-negative(more aggressive) that is could go either way, but he suggested it to raise her chances of no recurrences)."

    Talk to the oncologist and ask them what the nottingham score is.  The highest score is 9; the lowest score is 1.  

    A few other comments. Is your wife younger than 40?  My wife was diagnosed when she was 36 but she should have went to the clinic 5-7 years earlier. Again opinion here with some fact somewhere, but I believe if the patient is under 40 and still has menopause, that the cancer tends to be more aggressive and there is a greater chance of recurrence.

    Last but not least, again opinion, but I feel like chemotherapy is/was a business.  And business was brisk.  My wife did chemotherapy and hormone therapy for about 11 months in 2015 and into 2016. There were many patients at that clinic. My wife was an angry person before chemotherapy and is now as well after chemotherapy.  I dont feel like chemotherapy did much if any good (again opinion).  I did feel like the clinic was a business and finding new patients and doing chemotherapy was the only option provided by the oncologist.  I like lots of options and the oncologist only gave us one option. The drugs like tamoxifen have tremendous side effects like fatigue and depression that my wife has not pulled out of 1 year later.  Tamoxifen (and you can read about this online) can cause cancer.  When your said that the oncologist "recommended" chemotherapy, then ask "what drugs are you recommending that she take and why?" then go study those drugs online.

    You as the caregiver are at the beginning stages of all this.  If your wife goes through with chemotherapy, yeah your busy running errands and keeping the house organized.  But the work really begins when they stop chemotherapy.  Does your wife get better and become a human being or does she just sleep on the couch and blow up randomly?

  • Martha_Boone
    Martha_Boone Member Posts: 6
    I am sure that it can be

    I am sure that it can be tough, and I know that sometimes as a caregiver there is a tendency to dismiss your fears and worries because you think you might be unwittingly selfish. I hope that using this forum to vent has helped you in someway. Although I do not have any solid answer for you I do encourage you to stay strong. I am also a strong proponent of communication, I believe that taking the time to adequately communicate with your wife will help stabilize the situation. I commend you for attempting to reach our to family members, but sometimes these things are settled when you take a more direct approach. I know that this might not sound appealing, given the way you said she has been in regards to "negative" comments. I implore you to stay strong and to give it a try, also make sure that you are giving yoursefl an adequate amount of time to rest. If you do not properly tend to yourself when you can, it makes being an appropriate care giver that much more difficult.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    Staying strong

    Martha, are you a caregiver or patient?