New diagnosis, Husband not handling it very well.

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StarlitMomMom
StarlitMomMom Member Posts: 29
edited October 2017 in Sex & Relationship Matters

After my diagnostic mammogram and stereotatic biopsies last week, I was given the news that I do have stage 0 DCIS. As the path reports come in, the tissue sampled is negative for estrogen or progesterone markers.

Stopped reading them (they come into my patient portal, glad they do, but the latest reports are becoming confusing--looking at FISH/etc. I have my appointment for my MRI and with the breast surgeon next week. Sinking in, I have had many biopsies over the years beginning at 36, I am now 56, some for calcifications, some needle aspirations, every mammo required a diagnostic because of dense breast tissue--so it seems a very good radiologist picked up extremely tiny calcifications (less than a few millimeters) which I hope will be contained to my ducts. :(

Anyway....my husband has always been hyper-OCD. He truly is a person who believes everything has a place, and unfortunately those places change all the time, so it is impossible to keep up with his extreme eye for what he sees as a mess or disorder. I have learned to live with that part of him, sometimes it is harder than others, now is one of those times.

Last week I worked 40 hours, had my biopsies (one of which had a whole lot of bleeding, took the nurse almost 40 minutes of deep pressure to let me go home--and it continued to bleed for about 24 hours until it finally closed up) I got the news at my consult appointment the next day, and have made my appointments as well as visiting my therapist to be sure I am mentally on the right track.

Husband is not doing well with this--he begins to pick about things--the two unfolded laundry baskets in the basement, the tiny specks of toothpaste left in the yellow bathroom sink, my shoes being kicked off near the couch, and other very minor things. He has caught and stopped himself when I remind him of why things in the house are not in perfect order--anyway--long story short, he decided on the spur of the moment last night to take a car drive to Texas to visit family and an aunt who is 95 and going into hospice.

He was thinking of going a few weeks ago, but made a spur of the moment decision to go last night--he has next week off work. :( In some ways I am relieved to have the chance to rest, sit, think, and cry a bit. I don't have sisters--nor super close friendships--work has been stellar supportive allowing me to make up hours missed for these initial appointments.

A little freaked out here knowing that I will have to deal with the MRI, the initial surgical consult, planning out an oncololgist, and meeting with my primary for review of results without a husband to come home to or talk to about what I am learning. Texas is almost 1500 miles away, door to door, from our house.

Anyone else had an experience like this? He is writing and texting all along the way--saying kind things--but seems kind of manic in his action and his texting. What might I do at this point to keep my own sense of balance and should I do anything to try to help him? Breasts are super important for him, annoyingly so, almost an obsession. So, I guess that has me a bit scared too. Help? A blessing to have found this site and have been reading along with you giving me extra strength far beyond what the women's health center or the book I got through them has.


Comments

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2017

    Hi!

    I did all my appointments, chemo, surgery, and radiation with little help from my husband. It's not that he was indifferent to my diagnosis; it's just that we have tween twins with autism and they are a handful. The best support he could provide was to make sure that they weren't destroying the house or each other. Plus, both of us work full-time. It would be helpful if your DH were there for you, but it's not impossible for you to manage some of this without him. Interestingly, I was able to rely on lots of help from co-workers and others whom I never considered "super-close." In fact, cancer helped us become better friends.

    As for whether you should expend a great deal of energy, supporting your DH.... Well, he's in Texas, surrounded by family! Meanwhile, you're....alone. Right now, I'd say that you are the priority.

    As for breasts.... Well, I was able to have breast-conserving surgery (lumpectomy). My right breast has a bit of a dent in it, but I guess if I cared, I could have plastic surgery to fix it. If your DCIS is extensive, and your breasts are on the small side, a mastectomy might be in order. But, by law, your insurance should pay for reconstruction, if that is what you choose.

    ((Hugs)) I'm sorry that your DH reacted that way, and that you find yourself without his support. But, some people really freak out when they hear the "C" word (cancer).

  • StarlitMomMom
    StarlitMomMom Member Posts: 29
    edited August 2017

    Thank you Elaine, you are right--he is going to be with family and even though it is somewhat of a blessing to have some self-time, it would be helpful to have him here IF he was able to be supportive at this early time. In some ways, probably for the better of both of us that I get some days for me and to see my girls, granddaughters, and cousins (tomorrow.) And that I get to read and think. It is weird to get out of the house, get the usual double takes--not necessarily of a sexual nature--but, compared to the rest of my body, my breasts are on the quite large side--38DD, and I am 5'4 with pretty skinny legs and a middle aged "normal" torso.

    Weird to be walking around knowing I have cancer--don't think about it all the time, but hard not to sometimes. It seems kind of unfair to me that this has so far been found only in my left breast, the one my babies preferred--and the arm and pillow I use to hold my grand girls. Two 13 month olds, a four year old, and a new babe on the way in November <3 I have gotten through a lot on my own, over the years. Was single for almost 16 years, married my husband who I have known for years, we married about 10 years ago.

    Going to give it some time, and maybe it is for the best that he left to deal with some of this on his own and with his family.

    Thank you....really hoping the initial staging is right and I am able to work through most of recovery and treatment....radiation and surgery not favorite things to think about. I am already tired from fibro, going to have to begin a healthy exercise program after I get through the initial stuff. Youngest daughter is marrying August 26th, I have been assured I can wait for surgery until after her wedding....that is a blessing.

  • StarlitMomMom
    StarlitMomMom Member Posts: 29
    edited August 2017

    ps, it triple stinks to go off HRT cold turkey since Monday...the big reason I got the mammogram just when I did was my good gyne wouldn't prescribe my next year without my mammogram. Really nasty hot flashes, aches, fogginess, tiredness--hard to be sure it is HRT, but pretty sure that is a major contributor.

    I wanted to put it off the mammogram until I had my year in back at my old job--had a break in service for a year to teach--set my work clock back until mid-December. No short term disability or FMLA (although I am pretty sure that will not be a major problem for me, my workplace is amazing in responsiveness, why I went back, not another place I have worked is so good to employees.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2017

    StarlitMom,

    Having DD breasts may allow you to have breast conserving surgery. In fact, some women will have a lumpectomy and then a breast reduction on the other side so that both breasts "match."

    Maybe your daughters will be able to help out, though it seems as though they are just getting their lives off the ground (just getting married, having babies, etc.).

    Having a supportive employer is very important. When my treatment plan became clear, I met with my boss and he agreed to reduce some responsibilities while I was going through treatment. He also didn't mind that I'd be working from home on some days. It was doable, but not fun.

    Hope your doctors figure out your diagnosis/treatment plan soon. Do they suspect that you may have an invasive component? The FISH test is designed to test whether or not your cancer has an overexpression of the HER2 protein. However, I didn't think they usually tested DCIS for HER2 status.

  • StarlitMomMom
    StarlitMomMom Member Posts: 29
    edited August 2017

    I understood the first two biopsy reports quite well--DCIS and the "nurse navigator" person triple assured me this meant it was a "zero" and said it didn't matter whether it was negative or positive for estrogen or progesterone. I had to insist on getting a copy of the first pathology report from her as I am a "need to know" sort of person. Second test from Mayo I also understood--negative for estro or progest markers....third one, had to stop reading....what I did understand is that they were testing for invasive, and it was too hard to figure out the values through research sources...decided I didn't want to necessarily know the values, to be honest. I do know negative does mean treatment can be more difficult and one can have more relapses in the first two years, I also know this is more of a worry if it tests invasive. Tumors are small but are "high grade" and I know that will change the picture if it is invasive.

    I wonder what more can be or will be told from the MRI I will have tomorrow? Does that show extent better than the digital mammography diagnostics and the stereostastic machine/biopsies? I see the surgeon on Tuesday. I imagine at that point we will have a better idea of what I am dealing with, what options are out there, and I also want to get a good and recommended Oncologist on board....they "assigned" me one through the women's center, but the appointment is almost two weeks out. I do intend to wait for surgery until my youngest marries, August 26th. I didn't like the women's center at our hospital that much. The fact she didn't want to give me the biopsy report and was somewhat condescending (told me she loved her job and loved giving results like those she was giving me) then she went on vacation and I had to talk to a fill in who didn't find my preauthorization for the MRI, :( I knew it was there, called my gyne's office--she did find it later--need it for the appointment with the breast surgeon on Tuesday.

    So, I do have the MRI scheduled tomorrow and the surgeon scheduled for Tuesday. I am pretty scared about how treatment will affect my worklife, I am pretty active in my job--teaching/case coordination/developing and implementing plans for persons with disabilities. I think my husband's leaving right now for a trip that far away is giving me more fear that I may be on my own in regard to financial worries as well.

    Downing every antioxident, supplement, and health drink I have used--I want it to just disappear when they do the MRI tomorrow :(

  • StarlitMomMom
    StarlitMomMom Member Posts: 29
    edited August 2017

    I also only care that I get a lumpectomy as I know the recovery is much shorter....I love my breasts, they served my children well....I guess I worry because my husband is "breast obsessed" and I always wondered what that would mean if I had a breast cancer diagnosis :( For me, it is more like I want to be able to pay my bills, do what I need to do, and think down the road about reconstruction....this sucks.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited August 2017

    Starlit, can I just say you seem overly concerned with your "absent" husband and his feelings when YOU are the one who is sick with cancer and he just walked away?

    Granted, a lot of guys are "fixers" and don't know what to do when they can't fix things, but it really seems you are apologizing for having cancer and inconveniencing him and preventing him experiencing his perfect house and existence. I find it sad that you are semi-relieved that he left so you couldavoid the continued need to be perfect when he should be there for YOU.



  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2017

    Amen, Melissa Dallas.

    An MRI could give you a more accurate idea of what is going on. Unfortunately, an MRI can also be the bearer of bad news. Ultrasound showed that my tumor was 3.9 cm; the MRI showed that it was 5 cm+ and had a satellite tumor! Yay. However, that doesn't happen to everyone, and might not happen to you.

    Yes, a lumpectomy does have shorter recovery time, and I was happy to avoid reconstruction (which can involve multiple surgeries). I really didn't take much time off from work after surgery; I went back part-time for a week and then was back full-time.

    Starlit Mom, let us know how the MRI goes! And, yes, keep asking for copies of your reports! ((Hugs))

  • StarlitMomMom
    StarlitMomMom Member Posts: 29
    edited August 2017

    Melissa, I am not overly concerned--except he has already been more difficult than usual--both of my daughters (from a previous marriage) are getting married or got married this summer. Oldest married July 4th, youngest is coming up on August 26th. Dad not contributing much or anything, so I did spend a lot (for me) on their weddings this summer. Tab will ultimately come to about 5500.00 for both weddings--they both contributed more for their own weddings than I have. Husband has been majorly upset about that, I have felt all along that this is important for me....so I did spend, help a lot with the DYI projects, all to my husband's chag I didn't ask him for money, but did run up my credit cards and spent what I could.

    I know he is who he is, and I do love him. He has been (not) dealing with his daughter's gender transition, so that has been difficult for him...I guess I am scared to be left with very little and the prospects of not working for a while, if necessary, scares the hell out of me. He makes more than double my salary, has our insurance (very good insurance) but we made an agreement that we would not mix finances because of his horrible divorce almost 20 years ago--he lost everything.

    So, I agree, I need to be worried about me, taking care of me, buying earplugs so his house clean crap just fuzzes in and out of my brain. I honestly care about an environment free of bacteria (kitchen and bathroom) washed dishes and clean floors and counters....but seriously, he has always been wacko about tidy and I am recognizing I will simply not even be able to deal with those expectations as all of this gets moving along. He is OCD and many of his own family believe he may be on the autism spectrum. I know he needs help, but I do not make enough money, even if I am able to work without a break, to support myself very well....scary. I am scared today, haven't been scared until today. My dream husband would have taken me for a massage, hired a cleaning person to help for a few days, and been with me when I go with my kids in a few minutes for an outdoor concert....

  • pupmom
    pupmom Member Posts: 5,068
    edited August 2017

    StarlitMomMom, I agree with MelissaDallas. Also, your issues seem to be more about money than cancer. Of course, the two do frequently intersect, but still. My advice is to put your health first, and forget about the other chit until you are better able to cope with it all.

  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2017

    I'm a bit nervous about chiming in here since I don't know you guys. But as you know, Starlit, OCD is not logical, nor is the general anxiety that can accompany it. With real OCD, your husband can't simply give up his perceived need for tidiness, etc. by an act of will or caring because it will feel too scary. On the other hand, you can't be expected to let OCD rule you as well. Are you on good terms with his family, enough to ask them to try and get him to a psychiatrist for help, including medication? And to encourage him to support you in ways he is able to? With autism you may have to be very clear and direct, as in, "Would you be willing to pay for X in order to help our household and family?" If he can at least provide health insurance, that is huge.

    If you can attend an in-person support group, I think that might help you with the stress. Call the hospitals in your area; likely you do not have to be a patient there to attend the group. A group is a good place to learn about local docs as well as get support. Also search for the Wellness Community/Gilda's Club in your area. And try some mindfulness/meditation/yoga practice.

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited August 2017

    I suggest getting him a book called The Breast Cancer Husband. He may have absolutely no idea what to do. He doesn't know what to expect, the book may help. So sorry that you have to deal with a troublesome husband on top of BC. My DH did not do well on the day I was diagnosed, but he recovered and was with me every step of the way since then. Wishing you well..

  • Beatmon
    Beatmon Member Posts: 1,562
    edited August 2017

    well, Starlight, I think he sounds like a complete ass! His first wife burning him shouldn't have made you suffer...that is in the past. I can understand why you are scared because everything is obviously about HIM. You need support and love. I'm sorry that you are here and hope that dcis remains your duagnosis

  • Freya244117
    Freya244117 Member Posts: 603
    edited August 2017

    What about you?? Everything you write is about him, how he is feeling, how he is not coping etc. How are you?

    I get it, I really do. I was married to a man who would literally do the "white glove" test on the house. I am no longer married to him, there is only so long you can put up with that type of shit.

    You seem to be always making allowances for him, doing things the way he wants them done. Once again, what about you, where do your needs fit in to this marriage. If there is laundry to be done or folded, and it is bothering him, well he can look after it. Honestly, having him go on a trip is probably good for you, you get to relax and stop walking on egg shells. On the other hand, he has failed as a husband, he should be there giving you support. He does not seem capable or willing to do that though.

    We can only give you our thoughts, what you do is your choice. Only you know how much you are willing to put up with. Cancer doesn't change our relationships, it just intensifies what is already there. The good gets better, the bad gets worse.

    You deserve better, you deserve to be treated with love and respect, you deserve to be cherished, held and supported.

  • Artista928
    Artista928 Member Posts: 2,753
    edited August 2017

    He is very ocd. If he isn't on meds then he should be. They do help. I have a couple ocd's in my fam and it's rough for all parties. The ones I know don't like being ocd. Getting help and therapy should help him, that is if he wants help with it.

  • aussierockchick
    aussierockchick Member Posts: 12
    edited August 2017

    And Starlit, you have said twice your worried because HE is breast obsessed about what this will mean for your marriage!!!! What about you as a person,surely you are much more than a pair of breasts to him.!!!

    As for MRI,........not wanting to scare you but MRI showed 90mm of DCIS in my right breast. The actual size after my mastectomy was 70mm which was still huge. Ultrasound had showed nothingat all, there was no lump no discharge no anything. Several tiny spots of calcification on the mammo that they only biopsied to be thorough. I am glad of MRI though as it saved me having up to 3 lumpectomies then ending up with a mastectomy anyway,as theres no way they wouldve got clear margins and they do up to three lumpectomies here in Oz trying to achieve clear margins.

    I agree with pupmom put your health first you are going to have enough on your plate without continually second guessing your husbands reactions and worrying about things that havent happened yet.

    Be kind to yourself. xx

  • Shellsatthebeach
    Shellsatthebeach Member Posts: 316
    edited August 2017

    Hi Starlit, cancer is a tough enough row to hoe without the added stress. Please, put yourself first! If you are feeling tired and can't keep up with house cleaning, see if you can get help or realize that some things will have to go unattended for a little while. If he gets upset that is on him not you. You are dealing with something bigger than dust or unfolded laundry.

  • Momine
    Momine Member Posts: 7,859
    edited August 2017

    My husband came for a couple of appointments, but I quickly dissuaded him. I did not want to have to censor myself to avoid having him get upset or grossed out. Nor did I want him to take up the limited and valuable time of the doctor. It gets very tiring having to stay all upbeat, positive and "no big deal" all the time, with friends and relatives. My time in the hospital and with the doctors was time for me to be able to talk directly and without filters about the illness and not having to pretend that getting cancer was just the coolest thing ever.

    Our daughter was in college at the time, in a different country, and I had always been the one to talk to her, make sure she had what she needed etc. I managed to persuade him that he would have to talk to her and look after her, at least some of the time, which he did eventually.

    I also made a decision that he would have to take care of himself and that I would not be worrying about his moods etc., for the duration of my treatment. For the most part he stepped up in that regard. It is not your job to worry about your husband's OCD issues and boob obsession, while you are going through cancer treatment. Now is the time to take care of you, and he will have to behave like a grown-up. If he can't, please try not to make it your problem.


  • StarlitMomMom
    StarlitMomMom Member Posts: 29
    edited August 2017

    Thank you all for the support here. My husband did come home, at first he was "manic" trying to be super happy about everything--the last few days he has sombered up, is caring and compassionate, and has been very honest about how sad he feels that I will be going through this. I understand he loves "his girls" as in he is a breast interested/love person, I like mine--but over the years the continual biopsies, extra diagnostics, fears fears fears as I wait for the reports then as the date looms on the calendar, getting more and more sick to my stomach, mammograms have caused me stress since I needed the first one in my mid 30s.

    I am going to have a simple mastectomy, left breast. Multifocal, high grade, solid and inflammed DCIS have created the situation that the only path, per my long term internist, long term gynecologist, and all the new doctors I have met (all part of the Mayo network) (surgeon, oncologists) don't even put lumpectomy on the table. Yes, it is stage 0, at present--had a terror day when the MRI appeared to show something in the nodes in my armpit--so far, until the mast, pathology still says 0 or 0.5 if I am technical and do the math myself.

    I am opting to have an elective right mastectomy as well, as long as my insurance will cover it. The oncologist says it is likely they will as my 7-10 yr. risk out is over 35% for the right breast. I am getting genetic screening as the spaces they had for blood relatives with a cancer diagnosis with just five spaces, was ridiculous--I had to go into the stroke space, the heart disease spaces--so, for me and my girls and grand girls, I am getting the full genetic workup.

    Planning for a double mastectomy with immediate reconstruction. Am reading I will have a good deal of pain with the recon (saline placed with planned fills) and don't want that, but am almost certain that if I don't do this now, with my fear of surgery, I won't do this later and living life as a DD then going flat will be very psychologically hard on my image of myself. Plus my grand children (4 with one on the way in November, all girls) :) love to snuggle on my chest--and I want to try to preserve that part of myself. Sick to my stomach with fear about surgery, pain, drains, pain, not waking up from surgery....my husband is a very good provider as far as income to keep the household going. My own personal bills, car payment--credit cards--small loans for the weddings my daughters had/are having this summer--those are mine, and my credit may go to absolute hell, but it seems I will live to dig out from that and keep my job as I have support there in all ways.

    Thank you....I get to wait for surgery until my youngest is married, August 26th, I will be on the surgical calendar the week or two weeks after her wedding. A month ago this would have freaked me out, today I am scared of the surgery, but not freaked out...blessed...likely is no chemo, no radiation, double mastectomy and immediate reconstruction and our insurance will pay the lions share--and I NEVER have to have a mammogram again, from now on it will be one MRI a year for the small amount of breast tissue remaining behind the implant, for about five years per the oncologist, and he says my risk for developing breast cancer will now be 2% once this is over. Blessed...by early detection....scared because I hate pain, infection, drainage, and especially going under. Will deal with that fear....thank you all for helping so much last week. It meant so much when I really was feeling alone.

  • Colt45
    Colt45 Member Posts: 771
    edited August 2017

    Husband here. You are the jewel in all of this. Understand that. Anything less than complete support and understanding for YOU right now is unconscionable. Your job is to take care of you right now. And everybody's job around you is to get their asses in line and facilitate your recovery. My wife had a lot of the same fears you have identified. She had BMX and recon. We dealt with the drains and an infection from a suture that didn't dissolve. Most of the 1st year of recovery was interspersed with what my wife called "crappy annoyances" that she just pushed through, simply believing she would soon get past it. And she has. I pray for you that all of your supports rise to the occasion. God bless you

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    Here here colt45!

    StarlitMom, I know that surgery can be scary (especially thinking about possible pain). But I will tell you that when I had my umx, I didn't even stay the night in the hospital. I had some instances of pain, but wasn't even on pain meds during the day after a couple of days. I did take them at night as I had the habit of trying to roll onto my side (ouch). But as I was a therapist and sat most of my work day, I went back to work relatively quickly (took about a week). Working was a great distraction! I did have some help washing my hair in the first weeks, and turned over some household chores. My TEs didn't actually cause me very much discomfort. I did notice some tension right after I had fills, but other than that, honestly they weren't an issue.

    Also, I was hormone negative as well. If your mx doesn't find anything other than dcis, then the hormone negative status simply means that there is no indication that hormone therapy would be effective, so they didn't recommend Tamox for me. After my recon surgeries, I was done! (which will also feel sort of weird)

    I do agree with all above in setting good boundaries with your DH. I have worked with folks with OCD before and it is his disorder, not yours. So if the shoes on the floor by the sofa are bothering him, but not you, then he should either soothe himself and work on letting that go (if he's working with a therapist and perhaps on meds) or he should move them himself. This is not the time to be complaining to you about the things that are bothering only him. He will need to be responsible for his own disorder; which would ideally mean seeing a psychiatrist and working with a therapist, but that is certainly his decision (as long as it doesn't negatively impact you). Many women have found that their diagnosis put a kink in the way that things worked around their house for awhile (they were the ones who typically fixed whatever needed fixing and took care of everyone else), but if your DH doesn't want to adjust that's just tough beans. People who love you will adapt. That's what we do for people we love. We support them.

    Sending you warm thoughts and gentle ((Hugs))

  • StarlitMomMom
    StarlitMomMom Member Posts: 29
    edited August 2017

    MT Woman and Colt 45, I thank you both for your warm and thoughtful responses. I have been "caregiver/caretaker" as well as full time professional level employee (with the responsibilities that go with that) for many years. My own children are raised (33 and 25) but my 4 yr. old granddaughter had a birth injury, and does have cerebral palsy. I do not have primary caregiving tasks for her, her mother does a very good job in all of her therapies, treatments, and babe is doing extremely well. I have her as many weekends as possible b/c my daughter works primarily nights and has a 14 month old and new baby due in November (don't ask, have no idea why, but she has taken on Mom role as her life-task and most of the time is stellar. I have my little munchkin because I know I can give her the attention outside of care needs, in a very low stress environment--usually very low stress. As my work is case management for persons with DD or physical/mobility needs, I know why I take her--to work with her and to love her.

    I also have primary care needs for my mother with Alzheimer's. She has been in assisted care for going on four years. She thrives in this environment, but the paperwork, challenges to assure her health care and physical needs are met along with the overwhelming (for me) paperwork and stress of 24/7 concern is an ever looming problem/issue for me. Keeping a relative in assisted care with a diagnosis of dementia is very stressful :( My mother loses important mail, medications are prescribed that insurance doesn't cover, I get pounding calls for more paperwork and documentation (she is medicaid qualified and this is the only facility in our area that takes Medicaid qualified pensioners who do not have enough pension to pay the 3400.00 per month fee, medicaid picks up most of the leftover, I try to juggle the other bills and push off the parasitic providers who come and give "physical therapy" to Mom without consulting me, it is a mess--but, she loves it and it is very sad that I may have to move her for MY peace of mind and health.

    Last evening after work we did visit a step up care facility--memory care--it is much more like a nursing home, and right now it is not a fit for my mother, although she would be admitted based on her very failed ability to remember many important things related to her health and her ability to manage more than her day. I don't quite know what to do with this situation, I do know I cannot take the stress of managing her care with hostile staff and billing people at her current placement :( I like the new facility well enough, I believe I could recover with more peace of mind if she has true wrap care, I also believe she would adjust to the new facility, but she would lose her friends, her interesting outings, her sense of herself as independent. Anyway, had a long day of work, appointment screening for genetics during my lunch, went straight to get Mom, drove out to the possible new placement for a tour and interview for Mom, got home exhausted--literally weak from exhaustion--and my husband decided to make last night one of his nights for "organization talk"...throwing away stored (nicely stored, by the way) items we are not using in the basement and spare room....good god. It is ridiculous. He does not see he needs help, I love him but his OCD is affecting my life--usually I ward it off or brush it off, but when I am vulnerable like now, especially now, it seems abusive to me.

    I woke thinking I may need centering therapy with a goal of putting me first, back into my body and life first. I do not believe he will change, I do know I have to. I do not believe my brothers will change (begin to support Mom or me as I support Mom, have tried to garner support from five younger brothers in this care journey, it isn't happening and I get too hurt when I try to get physical help to make calls, help with paperwork, get her physical needs met (doctor appointments, hair cuts, clothing, toiletries, etc.) I think I need to place her, if it works out, at more of a nursing home type environment--it is the sort of placement she will need in a few months or year--and adjustment will be better right now, as she is mobile and social :( hell life is hard--I haven't wanted this role in such an intense way, but it slowly happened that I got buried under the role of caregiver, I do not want to die because I cared too much for others :( I do wonder if others think this placement for mom, taking the weight of her medical and financial concerns off of my shoulders, seems right--even though it isn't really time or right for her exactly now, it is right for me :( oh the things this diagnosis has brought up, the piled things I have let overwhelm my life and take my energy. I need to be strong for surgery next month, and trying to dig enough space for myself to be healthy going in, it is HARD to make a place for me in my life. Doesn't that sound stupid? Hard to make a place for me in my life.....

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017

    It doesn't sound stupid at all. It sounds like life. I am glad that you are seeing ways to begin to make space and time for yourself. You'll need it. The step up sounds like a good place to start. You're right that your Mom will adjust and that a move now, while she's doing a bit better, will be easier than later. And whether it "makes sense" to anyone else who isn't helping you shoulder the overwhelming burden of paperwork and fighting staff, so be it. If they want to make different decisions, let them say so and then step up and take the burden from you. If not, let them be silent. I'm sorry if that sounds harsh, but you seem to be making some hard (and it sounds like well thought out and good) decisions and anyone second guessing them, but not offering any help of their own, should just back off.

    It sounds like spending time with your dear granddaughter provides you pleasure, and you should continue to spend time with her as your journey allows. There may be times after surgery when that won't work as well, but that won't be such a long time. If you have to readjust the schedule a bit, then it is better to spend some smaller amounts of quality time with her, where you are engaged and fully present, than the usual amount of time but are overwhelmed and mentally absent. You'll find a balance.

    As far as your DH is concerned, IMO the more stress/uncertainty that the household is going through, the more regularly his OCD will come into play. It is his way of exerting some control and managing his overwhelming anxiety. That is NOT an excuse, just a matter of how OCD works. I think that laying out very clear limits that provide you with the space you need to heal and de-stress will be imperative. For example, the timing of these "organization talks", has to be good for you both, not just when he feels like it. (i.e. he has to ask if it is a good night for you to have a talk/plan and if you say "no" then it doesn't happen OR he asks you what day/time might be a good time to have a talk/plan and you make a "date" to do that) If he can't seem to live with that, it is fair to ask him to seek help. It honestly may not seem to him that his OCD is a problem, but if it is problematic to those he loves ("it seems abusive to me") then it IS a problem. Calmly discussing it, and how it affects you, might get you farther than waiting until you are too frustrated to have a calm discussion. So sorry you are having to deal with this now, on top of having to deal with everything else, but making space for yourself in your life is WORTH IT! big ((Hugs))

  • Colt45
    Colt45 Member Posts: 771
    edited August 2017

    StarlitMomMom, to say that you have a full plate is an absurd understatement. You are a gift to those around you. The simple fact is that for all of these people in your life to continue to be blessed by your love and caring---they have to allow you to rest and heal.

  • Colt45
    Colt45 Member Posts: 771
    edited August 2017

    MTWoman: for what it's worth, I think your advice is thoughtful and comforting. What a gift you have

  • MTwoman
    MTwoman Member Posts: 2,704
    edited August 2017
  • StarlitMomMom
    StarlitMomMom Member Posts: 29
    edited October 2017

    you were all so kind when I first began reading here. My surgery is set for November 13th BMX and DIEP flap. Have worked out issues for my Mom, worked and continue to work full time, watch things swing back and forth with my DH. We will be having our first therapy session next week with an oncology social worker...we will see if that helps. This is a sad weekend for me, first sad weekend so far... at least first self wallowing in sad weekend. I really hope it lets up soon. Going off HRT and nicotine at the same time has been a roller coaster ride to say the least. You guys are so amazing. I am awed and inspired even on a sad for me day. 💕

  • Colt45
    Colt45 Member Posts: 771
    edited October 2017

    You are allowed to have sad days. You'll make it through this sad day and any other sad day that may pop up. And with each passing day, you are another day closer to putting this challenging time behind you. Keep moving forward. One day at a time.

  • MTwoman
    MTwoman Member Posts: 2,704
    edited October 2017

    Starlit, I agree with Colt45, you are allowed whatever feelings you are having. Being real and actually feeling your feelings means that you can be present in your life. Feelings are fleeting, if you allow yourself to just notice and not try to push them away or hold onto them, you'll see that they pass. The enjoyable ones as well as the difficult ones. You can do this!

    I am also glad that you and your DH are starting with an experienced oncology social worker. Sending positive thoughts of healing your way!

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