Mental health and MBC : My daughter... - SHARE Metastatic ...

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Mental health and MBC

Jpl5036608 profile image
35 Replies

My daughter with stage 4 but oligometastatic is having single mastectomy dec 2. Says she is not worried about surgery. Is completely unraveled as my husband says. Two kids 18 months and 5. Good husband. Made them all move to huge rental and sell current home because she said gives her ptsd about chemo. She is 13 months into cancer. Moved this past weekend. Now claiming she needs a divorce cause hubby mean. Told 5 year old daddy wants mommy to die. I mean absolutely horrific behavior very narcissistic and borderline. Says she will move out and he gets the kids etc. After just making them move!! I do not understand her. Oh and that she will not do surgery or any more treatments and just die. Her current prognosis is good as chemo has worked! What do I do? What do I say?

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Jpl5036608
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hdhonda profile image
hdhonda

Unfortunately, you and your family members are not going to reach her. She needs professional help - perhaps a physician or minister. My heart goes out to you and the rest of your family. Many prayers and hugs for all of you. Blessings, Hannah

Jpl5036608 profile image
Jpl5036608 in reply tohdhonda

She sees a psychiatrist and a psychologist and has a new fabulous oncologist!

hdhonda profile image
hdhonda in reply toJpl5036608

I am so sorry. Wish I had the right answer. My heart is with you. Blessings Hannah

Jpl5036608 profile image
Jpl5036608 in reply tohdhonda

Thank you!

Hi Jpl5036608,

I'm so incredibly sorry for what you all are dealing with! I recall you posting a few months ago with similar issues and have wondered how you all were doing...It sounds like things have not improved...

Clearly your daughter needs the help of a psychiatrist, medication, etc. I suppose the issue is that she won't see a doctor or do what they say? If this is the case, I'm so sorry...I know that this happens sometimes with psychiatric issues and it's heartbreaking.

I don't know that there is much you can do, unfortunately, except be there for her and, especially, for the children (and husband).

My heart goes out to all of you...Take care... Lynn

Jpl5036608 profile image
Jpl5036608 in reply to

She sees two docs plus a couples counselor. She tells them only what she wants to. Things get better and then worsen!

in reply toJpl5036608

I was thinking of you all evening and as I woke up. I've experienced similar issues with a family member who had mental health issues and then wouldn't get help or would go to the doctor but not engage productively. Incredibly frustrating and leaves one feeling absolutely helpless.

I was wondering if her state of mind was constant or intermittent...it sounds like it's the latter? So at least you all have some less stressful periods of time?

I have no words of wisdom but will say that in every similar situation that I or my friends have experienced, somehow things did turn around. Time, getting the meds right, etc.? Although I know it can be hellish in the meantime...

My very best to you all...

Lynn

Jpl5036608 profile image
Jpl5036608 in reply to

And then the move to this new house is over and she is back to her normal. Fixed the kids rooms up first so they would feel good. And is washing mastectomy bras in prep for surgery. She is just truly unable to deal with stress is what it boils down to. They did zoom with couples therapist yesterday and it went well.

Jpl5036608 profile image
Jpl5036608 in reply to

And you are really smart!!

Julie2233 profile image
Julie2233

I was only thinking about you last week and wondering how you were getting on.

I really think this has progressed beyond a counsellor and her children need safeguarding. In the U.K. I would speak to social services to ask them to consider child protection provision being put into place but I know that systems are different in the US. Telling a 5 year old that Daddy wants mummy to die is emotional abuse.

Just because we have mbc it doesn’t stop us developing all the other human ailments. Her cancer definitely sounds like it was the trigger or the accelerant but she is not well and from what you have said this is not because of the mbc. I think you need to separate the 2 conditions. I know you care very deeply about your daughter and your grandchildren, but your daughter is the adult with the power in the relationship with her children, and I’m sure if she were not going through this she wouldn’t dream of hurting them or anyone else, but the bottom line is that they are not old enough to defend themselves. I am really sorry if this sounds harsh and critical, it’s not meant as such. Child protection doesn’t automatically mean breaking the family up - in my experience in the U.K. great lengths are gone to to avoid this, but it is about ensuring that the children are in a safe environment. Apologies if I have said too much.

Jpl5036608 profile image
Jpl5036608 in reply toJulie2233

No you didn’t. However I do trust my son in law. He has told her in no uncertain terms that these outbursts are unacceptable and if they should ever continue he will leave with the kids. He and I have an excellent relationship. Yesterday I believe the couples counseling was good and he was able to get stuff out. She was much calmer yesterday. She adds stress to her stress and her anxiety by doing things like moving this past weekend just days before mastectomy. It is no excuse I know but it compounds the crazy. She has also hired a safe nanny ( covid) who is the wife of my son’s best friend and that has helped enormously the past two days. So maybe she realizes the things she says are so beyond ok. I will keep you posted. Thank you for caring and listening and giving good advice. You are needed!

Julie2233 profile image
Julie2233 in reply toJpl5036608

I’m so glad I didn’t offend 😊 Sounds as though your son in law has things in hand - it must be so tough for him and you to deal with all this. I’m sure you will get your daughter back eventually and it’s a good sign if she is starting to understand that what she says was not ok. My husband would always compound the stress when he was ill too, I think it was his coping mechanism but it used to drive me to distraction. It came to the point that I knew he was about to become ill because he would start getting himself deliberately into stressful situations which could have been avoidable. It was almost as though he was subconsciously looking to create a situation to blame.

Jpl5036608 profile image
Jpl5036608 in reply toJulie2233

Sounds familiar! A crisis must be created when things are even just to shake it up. Actually my mom was so much like my daughter it scares me. She lived to 95 but she was always difficult and depressed and anxious... I guess this might be genetic too!

Weird how they create crisis in order to cope but cannot cope with crisis. You sound like you are amazing to have withstood all that.

Julie2233 profile image
Julie2233 in reply toJpl5036608

Yes, I think it runs in my husband’s family too. I think if you create a huge crisis you can’t be blamed for not being able to cope, as who can be expected to cope with a huge crisis?

When you are in that situation you just get on with it, don’t you 😊 I was very lucky to have my parents’ support and I understand how important grandparents can be and what a fine line they have to tread. Interestingly my son is now working with children with emotional problems.

Jpl5036608 profile image
Jpl5036608 in reply toJulie2233

Sounds like he learned from the best.. you! Actually interesting that in couple therapy she told the therapist she had no empathy for her husband. That is pretty sociopathic and I do not like that. The therapist handled all ok according to my son in law but he said she was definitely aware about the fact that there is so much going on in my daughters head mostly unhealthy. She even used the word nutty about certain things she heard. Nutty is a good descriptor.

hopefulinadks profile image
hopefulinadks

It sounds like she is really feeling sorry for herself and not thinking clearly about her family and getting better. She is in a lot better place than most of us as far as the cancer progression. There is a lot of hope left in her situation. Radiosurgery is a great option to knock out the ogliomets. This pity party isn't helping anyone, least of all her. I pray that her husband continues in his patience and perhaps explores this alternative treatment and continues with couple therapy for his family. He sounds like a very good man, Good luck to you and to your daughter and her family. Don't lose hope!

Jpl5036608 profile image
Jpl5036608 in reply tohopefulinadks

Thank you! Yes pity party is good description. Her husband is pretty wonderful. You are correct. I tread lightly when I tell her that cause it gets twisted to i do not support her! But he needs support too! How are you doing? Where are you located!? I see a lot of UK on here

hopefulinadks profile image
hopefulinadks in reply toJpl5036608

I am not doing the best but I retain hope. There are always miracles. I am currently using a walker and wheelchair because bone mets caused me to break my femur unexpectedly(sooooo painful!) and then they advised a tibia rod as well. I have had two operations since September and progression showed on my recent scans - lungs , liver, bones and afraid to look at MRI results until after Thanksgiving (in the patient portal) regarding brain mets. So you see, your daughter needs to know that she is in a terrific place as far as this disease goes for treatment. It could be so much worse! I take it a step at a time and hope to walk again. I too have a terrific husband who loves me dearly and three great children who are grown and doing well. A lot of people are praying for me. I don't have the luxury of feeling sorry for myself because this is serious business and I must keep positive and still believe it is doable! I live in the mountains of New York State in the US. It is quite beautiful here and that helps! I have done Radiosurgery and it does work on the areas that were treated. It's just tough to keep up with this. Advise your daughter to take Modified Citrus Pectin daily before her surgery as it may help to contain the spread of CTCs (circulating tumor cells) which can be a result of the operation. I believe that is what happened to me. Although I do not believe there is absolute proof that this works , it really can't hurt as it has other benefits as well. She can research this. I use the Eugenics brand. Good luck to your family. You are a great Mom!

Jpl5036608 profile image
Jpl5036608 in reply tohopefulinadks

You are amazing to be dealing with your issues yet worry about us!! I grew up in montreal so I know NY upstate well! My brother in law is in buffalo and my son’s wife grew up in Elmira! Where are you treated? Have you done any trials? My daughter was diagnosed stage 4 de novo at just five days before her 40th bday. Baby was 5 months. So we are grateful things have improved. But with this disease who ever knows! She is treated at univ of colorado but sloan is her second opinion remotely. They are wonderful. Have you been there? Glad you are positive and my kid cannot thing like that unfortunately. She has always been like that but this is magnified... I will check with her about the pectin. I hate that surgery did this to you... you are so wonderful I can tell!

hopefulinadks profile image
hopefulinadks

You are very sweet. I had my surgery at Sloan in February 2019 (mastectomy and lumpectomy for two different cancers in both breasts) and ACT chemo in northern NY before surgery with guidance from Sloan. My oncologist at Sloan recently died at only 38 years of age and I have not secured another one there yet. I do have an oncologist up near me. I did External Beam radiation in Burlington, Vt after surgery on my chest and stayed at the Hope Lodge, going home on weekends. Unfortunately it did not work, I developed Mets the December 2019 after my February 2019 surgery. I am currently on Fulvestrant and just started Ibrance and in addition to my medical oncologist up here, I go to a doctor in NYC for Stereotactic Radiosurgery one area at a time. He is not affiliated with Sloan. We have been traveling down there on and off 2x a week since February 2020. It's a brutal ride now after the leg surgeries but it gives me hope that we are trying to keep up with the cancer lesions. As I said, it does work in the area treated. I just have so many! I have not done any trials but may if Ibrance does not help. I am not sure how to pursue that but I will find out from MSK if it comes to that. I hope and pray that Ibrance helps. Your daughter is so young and has the stress of young children as well. I will keep her in my prayers. I will pray that she turns her thoughts to working hard to contain this thing that is cancer rather than dwelling on her bad luck. Life is unfair and she has had a tough hand dealt to her. Perhaps with time, family support and maybe some positive scans, she will turn her thought s around. The best to your family. Take care of yourself so that you can continue to try to help her. :)

Jpl5036608 profile image
Jpl5036608 in reply tohopefulinadks

My daughter adores Mark Robson at Sloan. Has not met except remotely but you might try him! What happened to your young oncologist? Also it seems like they can definitely stop your progression a little at a time. Maybe that gives better longevity to the treatment. Cancer sucks!!!

hopefulinadks profile image
hopefulinadks in reply toJpl5036608

Thanks. I will look into Mark Robson as I feel the need to have Sloan involved again. My oncologist up here is a very nice young smart guy but it is a small hospital and thus no clinical trials etc. I don't know any details about young Dr Lyon's death except that it was unexpected and he was at work . He was adored by his patients and colleagues. I had him for a brief few months.. I suspect Covid at his young age. I actually found out about his September 29th death from a women on this site. I was recommending him to someone and she got back to me and told me! Once again, good luck to your family. Enjoy the holidays as best you can. One day at a time.

Jpl5036608 profile image
Jpl5036608 in reply tohopefulinadks

Same to you! And yours! Hopefully you can get in with this Dr. Robson!!

mariootsi profile image
mariootsi

Omg, I'm so sorry you are going through this. I would suggest your daughter may need professional help. I pray she agrees and seeks help. This damn disease is just so hard to deal with.I just started weekly Telehealth meetings with a psychologist and it is extremely helpful.

Sending love and prayers to you and your family.

Jpl5036608 profile image
Jpl5036608 in reply tomariootsi

She does have two therapists plus couples one but she doesnt always show these crazy parts to them

ChrisVict profile image
ChrisVict in reply toJpl5036608

I had a breakdown during my chemo treatment I was extremely depressedGot treatment for 10 days took anti anxiety meds for 3 mos and antidepressants 6 months. The hospital stay was okay mainly to stabilize and Not deal with too much. afterwards I continued with psychiatrist and finally found an excellent psychologist. I saw the psychologist 2x a week and 1 week and then less. It is important to have a good psychologist with clinical experience. Unfortunately he died of Covid but he was responsible for pulling me back together. I understand what your daughter is going through and so young with young children amplifies everything.

She is lucky that treatment went well

needs to find hope. Meditation and physically activity combined will help ground her. I hope this helps.

Jpl5036608 profile image
Jpl5036608 in reply toChrisVict

The psychologist died of covid!!? Omg!! My husband has been talking to her about exercising etc. She does chase kids around all day so there is that! I wish she would do an intense hospital stay but I do not think that is in the cards. So glad you found your balance. Wish I could bring you here!

mariootsi profile image
mariootsi

She is actually very lucky to have ogliometastatic cancer. I have read it may be curable.

Jpl5036608 profile image
Jpl5036608 in reply tomariootsi

They just informed her she has been NEAD since May... so 7 months after diagnosis she was nead! Tumor marker 0.4 since then. She was actually happy last night

mariootsi profile image
mariootsi in reply toJpl5036608

Oh that's wonderful.

Jpl5036608 profile image
Jpl5036608 in reply tomariootsi

And yes. Oligometastatic is different and that’s why they are doing more aggressive treatment now.

mariootsi profile image
mariootsi in reply toJpl5036608

Excellent!

ChrisVict profile image
ChrisVict

Best of luck with her treatment!

Cocothecat profile image
Cocothecat

In reality, your daughter's husband had to agree for the move to happen. This is important to remember.I recommend you call your daughter's psychiatrist and therapist and leave messages. Each can choose whether to listen. If they do they can use this information or not in their treatment.

And remember that asking for your own support is wise.

Blessings.

Jpl5036608 profile image
Jpl5036608 in reply toCocothecat

Cannot call therapists. They will share this with her. I did call her psychologist once and it was not good. So I can just watch from afar!!

Also surgery is happening Wednesday. Her tumor markers are 0.6 so she is NEAD. Now she is happy... for a bit anyway. Taken off perjeta after 14 months cause it has done its job and she has that hand foot cut syndrome. She is happy about being off it and can do cutaneous shots of herceptin now! Ysy

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