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Topic: . Failed relationship with stage IV sister

Forum: For Family & Caregivers of Loved Ones With a STAGE IV Diagnosis —

A place where family members, caregivers, and loved ones of people having a Stage IV (metastatic) diagnosis can share, discuss, and support one another through the tough times unique to this diagnosis.

Posted on: Jun 3, 2018 06:37AM

Merrylegs61 wrote:

Warning. Long post.

background.

Watched grandfather fight lung cancer then spine when I was 5. Not sure they knew which was primary/secondary back then. Broke his spine in mining accident some years previously. Who knows.

Age 14, dad died following hideous battle with lung cancer. Mercifully brief. Traumatic effects felt for many years. Things like mum having to leave to get to a phone (we had none) and elder sister running away from dad as she couldn't cope, leaving me to stoke his back and beg him to breathe, while tears ran down his cheeks and he struggled for breath.

Age 25 mum diagnosed with breast cancer. Moved many miles away from hubby to be with her. She got 2 years, defying prognosis to see her first grandchild, my daughter. Hubby told me just after, he was leaving, though actually stayed for a few years until leaving me a single parent to 2 girls.

Age 38, sister, then 42, diagnosed with breast cancer. Fought -like an absolute trouper, and beat it. She was the most incredibly brave, determined person I have ever seen. used to drive herself to and from chemo and go to work straight after!

She kept telling me to go for mammogram, see specialist etc. Genetics person told her to set down a blood sample for any future test. Sis said she would as we both have children.

13 years later, all of us utterly shocked to have her diagnosed stage IV. Her thigh literally crumpled. She had her leg pinned from hip to ankle. They had to use 2 pins or would have shatters the remaining bone. A few days later after tests, they had to pin other leg hip to knee as already had large hole in that thigh too.

In all of this, she cried once and once only. And only because nurse left the brake off her bed while she was in the toilet. She sat on the edge, both legs in plaster, bed rolled away and she couldn't move or reach her buzzer!

Again, an absolute star. Able to navigate stairs, on crutches, by the end of week one. Driving in a couple of months. Back at work - never telling them anything other than she'd had hip replacement. No adjustments asked for or given and a full time job with a long commute. She has monthly injections and hormone treatment. And here we are, some 6 years later.

I've never doubted our love for one another but we've never been close like other sisters. We fought most of our childhood and into adulthood. I mean physically! She has broken my toe (dropped a bed on it deliberately) and my finger (beating me off a concrete floor and jumping on me - she was 25!) But still got over those episodes and were there for one another. We didn't do stuff together though, and she's never been a sharer - of emotion, plans, feelings. She hurt my mum by her shutting out.

We live about 1.5 hours apart. As a single parent I've spent most of the years she's been ill, with little or no money, no transport and hard to get through to hers, but I tried. I was there when she had her mastectomy and tried in every way I knew, to offer her emotional or practical help. She has never spoken to me about her feelings over any of it. I don't know if she does with anybody. All her life, she has had close buddies and those have always seemed to be who she turns to or goes to. Not her family. That's the way it has been. I accept my own limitations in relationships and her choices in her preferred go to companions. Though it has saddened me and did my mum too. I'd see other sisters having nights out, spa days, shopping trips, all yon. And wished it could be us, but she would reject any suggestions made and I had no idea how to fix it. while she's been ill, I have regularly told her I am here for her, if she needs to talk or needs anything I can do for her. Any time I asked how she was doing, all I'd get was "fine".

She never did have a blood test. She always said she was going to but when I finally asked her if she could, or would at least go and talk about it, she refused. We both have grown up children, 3 girls, one boy. And I am utterly baffled.

2.5 years ago, I was so ill I had to stop work. Couldn't see properly, so dizzy I had to lie down to stop the world spinning, constant headaches, passed out sometimes etc. Sent for an mri amongst other things and out of the blue in an eye clinic, was told they had found what they thought was a Meningioma, (tumour) on my brain. At that point, single with a mortgage, no money and worried I would not be able to work again, would lose my home etc., I also found out there are links ( research in early stages) between Meningioma and breast cancer. Women who have one, often develop the other. I pleaded with sis to have the test. She refused. And as I sat there telling her how scared I was - not that I was going to die but of how the Hell I was going to live, unable to drive, work, support myself, where, how, I would be able to survive, what I got back was a stream of vitriol.

Maybe now I would no what it felt like to be her. Maybe I would know something of what she's gone through over the years. Etc etc. I told her that I loved her and was sorry as I knew it would hurt her but that I didn't want to be in touch any more. I just couldn't bear all of this on top of everything else. And we haven't been. She has messaged me saying if she ever has the test, she won't tell any of us - including my daughter's, the results. I didn't respond.

What to do? I am not great at relationships I accept. How do you know what somebody is going through if they repeatedly refuse to tell you? I have cared and supported others all my life. I have consciously worked to help other struggling working extensively with single parents and carers. I am able to empathise and I cared for mum in ways my sister couldn't. There was nothing about her cancer journey she and I didn't share and 30 years later, I miss her still, but have no regrets.

But my sister. . On the one hand, realistically nothing much has changed. We were down to texting one another every month or two. The occasional call and meeting up a couple of times a year. And judging by her last rant rant ( which I don't ever want to face again) she clearly didn't get much from me!

But.. she's my sister, the only previous generation I have left. And time is passing. I have no idea what to do or if, aside from the way it "should" be, if there is any point for either of us. Once upon a time, 20 odd years ago, it turned out my brother-in-law had been seeing somebody else and at Christmas, took an overdose. It would have killed a smaller man, was no cry for help. My sister took her baby and toddler, jumped in the car, and drove for hours to spend Christmas with HIS brother. The whole village had known everything. She only told me (who lived considerably closer) some months later because she knew I was about to find out from somebody else. That, is our relationship.

Is it fixable? Should I try? Or are we both just better off leaving well alone?

Thank you, if you made it this far.

X



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Jun 3, 2018 01:33PM bluepearl wrote:

I suspect you have a "toxic" sister so no. Sometimes it is best to keep a distance, which you seem to be doing and expecting someone to change when there hasn't been any effort on her part. would be futile in my humble opinion. I am sorry you have got through all of this....it has been really, really tough. I hope you have friends...you can pick them, but you can't pick your family as they say. Narcissism, which seems to be the case with your sister, is rarely reformed and you can certainly tell she has toxic relationships with her other family, including her daughters. She sounds a bit histrionic as well. Leave well enough alone, is my humble opinion. Wishing you an easier road ahead of you. (((HUGS))))

Heart

Dx 1/6/2011, IDC, 1cm, Stage I, Grade 1, 0/7 nodes, ER+/PR+, HER2- Surgery 2/12/2011 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Dx 2/2013, IDC, <1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2- Surgery 3/10/2013 Lymph node removal: Right, Sentinel; Mastectomy: Right Hormonal Therapy 3/18/2013
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Jun 3, 2018 01:44PM nash wrote:

I'm sorry that you and your family have been through so much. I don't have a ton to offer on the relationship end since I don't have any siblings, but it does seem like it would be hard to change the dynamics of a relationship with an adult sibling who is physically abusive and refuses to give you the results of genetic testing should she have that done. If I were in your shoes, I think I'd accept that the relationship dynamic is never going to be the way I'd like it to be and move on.

On a more practical note, I assume you mean BRCA testing when you say "blood test"? Have you seen a genetic counselor yet? If you haven't, it's probably worth seeing one. Another option would be taking one of the over-the-counter genetic tests you can buy such as 23 and Me or Color Genomics that test for the more common BRCA mutations. If one of those mail-in tests came back positive, you could then go to a genetic counselor with that info and probably get the full Myriad BRCA panel, and whatever other genetic tests appropriate for your situation, ordered. You don't need to rely on your sister to start the investigation into genetic mutations in your family.

I was first diagnosed with bc at 38, had a local recurrence at 46, and now have a new primary at 49. My mom died of bc and my dad was an Ashkenazi Jew who did of pancreatic cancer (usually BRCA related). I've had genetic testing run twice (Myriad BRCA and BreastNext 17), and no genetic mutations of any kind have been found.

Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IA, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IIIA, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain, Grade 3, ER+/PR+
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Jun 3, 2018 02:11PM DearLife wrote:

Merrylegs I am sad for both of you. I had a younger sister who also did not engage with the family. When my mom and dad were ill and dying, she stayed away because she “couldn't handle it." She just became overwhelmed by emotions. There was no abuse or other history behind it; she just couldn't handle her feelings.

She was a sick child and I think felt resentful at some level that she got the “bad genes" in the family.

About ten years ago, she was diagnosed with advanced cervical cancer. She never went for PAP tests because she “couldn't handle" seeing the doctor. I did everything to be supportive but didn't get much feedback. I sent cards and flowers and even met with her doctors.

Two years ago, she died. I was there with her in hospice and I think it meant a lot to her. I am glad I continued to be supportive, even though she had nothing to give to me. I just think she had some kind of emotional dysfunction and saw herself as the victim in the family.

I don't know if this helps, but this was my experience.

Good luck to you. You have been through so much and deserve kindness in return.

I've looked at clouds from both sides now. Dx 12/1/1998, LCIS, Right Dx 1/9/2018, IDC, Left, 1cm, Stage IA, Grade 2, ER+/PR+, HER2- (IHC) Surgery 2/25/2018 Lumpectomy: Left; Lymph node removal: Sentinel Dx 3/1/2018, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/4 nodes, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/16/2018 Femara (letrozole) Radiation Therapy Whole-breast: Breast
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Jun 5, 2018 07:24AM edwards750 wrote:

I’m sorry for both of you too and agree you don’t get to pick your family.

We have a brother who has officially ostracized the rest of the family. Long story but he too felt like the victim growing up. There were 7 of us. 5 boys and 2 girls. We have already lost 2 brothers. One was killed by a drunk driver at 24 and the other died suddenly on his office at 50.

When our mother died more than 10 years ago(father already passed) he decided to disown us. We have had a few emails from him over the years asking for money despite the fact he got the brunt of our parentsmoney and the house because he was their caregiver for years. Another long story. He’s the only single one in the family.

My sister is upset he has shunned us but I have told her repeatedly it was his choice. All efforts to reach out to him have been futile. He doesn’t want to be found and we aren’t sure where he is.

It sounds like your sister is of the same mindset. It’s sad but it’s their choice. All you really can count on is your family whether you chose them or not.

You have done your best to have a relationship. It’s up to her if she wants one. My mother always said you can’t put feelings into people. So true.

Diane





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Jun 5, 2018 03:35PM Merrylegs61 wrote:

Thank you to all for taking the time to post replies and for your kindness. You have settled my mind considerably. I think the crux of my pondering is what I think in reality i.e. we're neither of us really doing without much or missing lout on much versus the right and wrong of it. She is my sister. It's not right. But when I do think of getting in touch with her, every bit of me hits a blank wall. I just don't know what I would say to her or how to improve the way things were and if it's just going to be the same...... no point. I worry about when the end does come, what if she would have wanted me and I'm not there. But based on the past, I don't think it's likely I would ever have been the one she would turn to and she has a husband, her children and very close frineds. I think of her every single day and say a wee paryer for her health to be maintained and for her to be OK for as long as possible.

You've made interesting points. My sister was a sickly baby and my folks were advised to have her baptised in hospital as she might not make it home. It does seem like she's had more than her fair share. I've said that to her - it ISN'T fair. But when she let rip at me it did feel as though - and who could blame her - there was an element of - "how come YOU get off scott free?" Or maybe that's just my guilt. She is definitely entitled to be angry, but she picked one of my weakest hardest times to do it.

Testing here, I live in Scotland. NHS stipulates they must have a blood sample of somebody diagnosed with breast cancer (obviously there was nothing like it when mum was ill) before they will test mine. I didn't know you could get tests yourself but will look into that.

Again, thank you for your kind replies. I go for my NHS mamograms when called and always get the "any history of breast cancer in the family?" I tell them about mum and my sister and the next question is always - has she been tested? Why not? But I can see from looking at the forums, some women, some families opt not to do it and that's helped too.

Meg xx

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Jun 5, 2018 04:52PM FaithsMama wrote:

Merrylegs61: Ditto to BluePearls response. :D
I am really sorry for so many losses in your family that you can't rely on the one person who shares so much history with you. I don't think she will ever change, or the dynamic between the two will every change, unless your sister acknowledges the problem, recognizes that there is a problem, and has a desire to fix it. I don't see any of those traits from what you've explained. I would seek out close relationships with other female peers who can perhaps fill that void for you.  Best of luck!! 


Dx 3/30/2018, IDC, Right, 1cm, Grade 2, ER+/PR-, HER2- (IHC) Dx 3/30/2018, IDC, Right, 1cm, Grade 2, ER+/PR+, HER2- (IHC) Surgery 5/18/2018 Lymph node removal; Mastectomy: Right; Reconstruction (right): DIEP flap
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Jun 10, 2018 06:55AM illimae wrote:

interesting read. I seem to identify with your sister mostly (although, I do not understand not getting tested, at least for the kids sake). It sounds hard but please don’t take the distant behavior too personally. Some of us just don’t enjoy the company of others much, I have just a few people I spend time with and family didn’t make the cut. Just because we’re born into a relationship with people doesn’t mean we have stay there. My family aren’t too bad but we have little in common and time spent in person or by phone is a chore. Maybe texts every few months is the best she’s got. I would try to accept things the way they are and not spend time feeling bad about the state of it.

Perhaps this is considered selfish by many but from my own stage IV perspective, my life is too short to spend with those who’s company I do not enjoy and it isnot my job to fix what I don’t consider broken.


Diagnosed at 41 Stage IV De Novo Dx 11/16/2016, IDC, Left, 5cm, Stage IV, metastasized to bone, Grade 3, 3/13 nodes, ER+/PR-, HER2+ (IHC) Chemotherapy 1/2/2017 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 1/2/2017 Herceptin (trastuzumab) Targeted Therapy 1/2/2017 Perjeta (pertuzumab) Surgery 6/26/2017 Lumpectomy: Left; Lymph node removal: Underarm/Axillary Radiation Therapy 8/10/2017 Breast, Lymph nodes Dx 10/5/2017, IDC, Left, Stage IV, metastasized to brain Radiation Therapy 10/20/2017 External: Brain Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 10, 2018 07:32AM beach2beach wrote:

Sorry to hear this, but it is not an unfamiliar tune in families even friendships. If it would perhaps make you feel better, throw her text just checking in, thinking of her, if she needs anything reach out. If she doesn't reply, she doesn't. You made the move, showed the care and concern. It may give you a little bit of piece knowing you extended the olive branch.

Some people are just like that but it is a little more difficult when it is a family member.

Dx 7/28/2017, LCIS/DCIS/ILC, Right, <1cm, Stage IA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 8/8/2017 Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Hormonal Therapy 9/12/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jun 10, 2018 04:37PM Micmel wrote:

I have been estranged from my older sister, one brother, my father, my step monster. For over 15 years now. I realized I needed to create my own family. It was too much for me to handle the manipulation and the behavior of just dis function and meanness. You tried , you reached out. Sometimes people just aren't meant to be close to others. They pick and choose who they are with an what they decide to share. An arms length approach. I myself have suffered many relationship fractures since diagnosis. Some occur under my own roof. You must put yourself first and realize you're a caring sister/person who honestly tried. Best wishes ~M~

Dx 1/22/2016, IDC, Left, 4cm, Stage IV, metastasized to bone, Grade 2, 13/35 nodes, ER+/PR-, HER2- Chemotherapy 2/10/2016 AC Surgery 6/21/2016 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Chemotherapy 7/20/2016 Abraxane (albumin-bound or nab-paclitaxel) Targeted Therapy 11/7/2016 Ibrance (palbociclib) Hormonal Therapy Arimidex (anastrozole) Surgery Chemotherapy Chemotherapy

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