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Topic: Please tell me I am not alone

Forum: Caring for Someone with Breast cancer —

A place to share your struggles and concerns about supporting and caring for a person you love diagnosed with breast cancer with others who understand.

Posted on: Feb 5, 2019 02:46PM

StillHaveMyPride_orNot wrote:

Hi everyone.

I can't believe this story, myself so I will understand if some of you do not either. Our story begins before her diagnosis, so please bear with me.

I am a 49 year-old male who was dating a woman for 11 years. Neither of us wanted to be married for different reasons -- we both like our space. We lived in adjacent towns so we saw each other when we wanted and had our alone time too or time with friends. We had an open relationship - either of us could pursue others if we so chose but our love was for each other. We had an agreement to disclose those arrangements with others.

In this (sorry for the long) post, she is Sabrina. We began our relationship when she pursued me after a common group of friends traveled and attended an event together. She was in the process of divorcing at the time and was divorced soon after we met. I helped her move and get her away from her abusive husband who controlled every dollar, etc.. for years. I took care of her.

We had several years of what I would call bliss. I am careful with words and I truly mean that. There were times where I was incomparably happy with Sabrina and our relationship. I never experienced joy like I had with her. I am a stoic, sarcastic personality and at times with Sabrina I would laugh in absence of humor but for joy alone. I truly loved Sabrina more than I ever thought possible and more than anyone I had ever loved. She professed her love for me and I know she meant it.

Fast forward to about a couple years ago. I faced a difficult abdominal surgery and recovery but I did OK - I was back on my feet in a few weeks and "performing" (trying to be family safe here) as well as one might expect. I still cared for Sabrina in every way that I could. Soon after, a close family member of mine was diagnosed with a rare and very aggressive form of cancer. I made every effort to cross the country several times to help with his family and to see him and care for him. Sadly, he passed within a year of his diagnosis. During this time Sabrina was understanding that I couldn't be there for her as much as I had been and she encouraged me. Between travel costs and pay cuts I had experienced at the time, I was not able to treat Sabrina and I to our weekends or trips we normally took. I felt bad but she understood.

Then about 16 months ago, Sabrina was diagnosed with triple-negative breast cancer, stage 2. I promised her I would help her in every way and would be with her every chance I got. Since her family is far away and they were not close (emotionally), I took that role for myself, to her relief. I would help with appointments, driving, research, comfort, cooking, etc. as much as I could. Sabrina seemed distant, which I suppose is to be expected.

Just prior to her surgery, my other close family member died, leaving me with grief for him and care of Sabrina, who again said she understood but I did my best in both roles.

After her chemotherapy she was to have a lumpectomy to remove the tumor. I attended her every minute. Cooking, pain meds, drains, assisted moving and bathing. Anything for her.

We got results of the surgery. No clean margins. More chemo. More tears and more despair.

Within just a few days of testing and scans, stage 2 became stage 3, then 4. No doctor would say it. Sabrina wouldn't see it.

So I took that role, too. I had to tell my love she was going to die. The doctors wouldn't give a window. From my reading I knew she had 6 months at best. She had no plans for anything at the end of her life.

So I took that role. I (gently) pushed her to find more treatments, immunotherapy, trips to Mayo. I pushed to organize her life a bit and see that she had a Will. And then I asked her to move in with me so I could care for her. She accepted.

During her last treatments, I essentially carried her, to and from. When they admitted her instead of giving her chemo one afternoon, I saw a glimmer of understanding. I did NOT ever want to scare her but she had to know the truth.

She wanted to die in my home but her condition was so poor that had they discharged her, I am not sure she would have made it there, so we stayed.

One hospital kicked her out (transferred her to another for as yet no viable reason, either spoken or on paper). Sabrina had no money of her own and poor credit so I think it was about money. I cannot prove this but it makes sense.

The second hospital also tried to discharge her but since I was PoA by then I denied it. While fighting with the hospital I stayed with Sabrina through her last days. I summoned all of her family who were able and coordinated her friends and co-workers from her bedside.

When Sabrina had deteriorated and her breathing became erratic, I picked her up and held her to my chest, whispering in her ear that everything was OK, I was here, she was safe and it was OK to go. I said this and, "I love you." More than once. I received a muffled, "I love you too," through her mask and when I said, "it is OK to go" she said, "OK."

That was her last word to me. She died shortly thereafter.

Strangely, I did not cry though I had many times before and since. I consoled her family and friends and told them we are together and everything will be OK. One by one I sent them home and eventually was alone with Sabrina again. I waited to sign her out and sat with her for about an hour, marveling at how much better my life was that she was in it. It seems an odd emotion to have, but I did.

I was morose over the next few weeks. Everyone involved - her family, friends, co-workers all thanked me for caring for her and helping her and getting everyone there. It was of some consolation to me that everyone told me I had done the right things. Everyone told me how compassionate I was. I at least had the comfort that Sabrina had died in a circle of loving family and friends, warm and safe. I did everything I possibly could have done.

Or so I thought. I was her everything, executor, inheritor, etc. but we never talked about accounts and passwords so I had to wait for legal processes to pass. I couldn't access her email, etc. but she had no assets to speak of so no big deal. I set her phone aside.

A month later after I had cleaned up her affairs I turned the phone on again, just to wipe it clean and perhaps give it away or sell it. Her email was open. I did not open it nor did I request that anyone do so. It was then that I saw the messages.

Between Sabrina and him.

The affair had started right about the time I was with my other close family member just prior to and during his death. Sabrina was not distant because of her illness. She was distancing herself because she had been seeing another man, one she did not tell me about (even though she had permission as long as there was disclosure). Our intimacy had been lighter, less frequent and shorter because she was sore, but not just from illness.

To say that I was devastated is a colossal understatement. I literally collapsed. I cried out. I didn't understand and still don't. It has been a few months and still I wake with a start and tremble at night. My anxiety attacks are fewer of late, only about 2 per day instead of 10. My counsel (who has been amazing) tells me this is one of the most trying situations she has ever witnessed.

Tremendous grief and loss are now overshadowed by anger and embarrassment. I ask questions for which no one has the answer. I will never know why. I will never be able to confront her. She even had permission and we had joked about bucket list items like this and I had said, "well you had better damn well go for it if you have the chance!" And she did. Silently, secretly.

I started to remember details of other times when Sabrina made excuses to stay home, not have me over, etc. and those corresponded with the messages. I had even thought something was wrong more than once but I let it go. I pushed it aside. I was naive. She couldn't possibly have the energy to cheat much less the will, right? She was sick!

Then I found more emails. Telling him how she could not have done this without HIS support. How HE helped her decide to do all those things that I did. Things that he did literally none of. He couldn't because I was there and would have seen him...

I am lost. I don't even care about the sex as we had both had other partners. I was rejected. All she had to do was ask me for help or tell me she was missing something. But she stayed silent.

As I said above I am sorry this is so long but I swear it is true as well as I am able to convey it. My dearest love and dream girl effectively dumped me after her death. I am trying to not drown in guilt. I know it is not my fault but it is so tempting to blame myself.

I wanted to share with someone but I don't want to tell her family or mine. I cannot find any stories like this "out there" so I am posting my own. Advice is welcome. I know it does not compare to confronting one's own mortality and having cancer but it is a great struggle in its own right.

Thank you for reading.

Tom

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Feb 5, 2019 02:55PM Runrcrb wrote:

Tom, this is heartbreaking to read. It will take a long time for you to process and move through. Since you loved her and you talked of an open relationship i ask, would you have behaved differently in the final stages of her disease if you’d known? That answer may help you

My condolences on the loss of your Sabrina.

Dx 6/27/2016, IDC, Right, 1cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Dx 6/27/2016, ILC/IDC, Right, 2cm, Stage IIB, Grade 1, 4/10 nodes, ER+/PR+, HER2- Surgery 9/21/2016 Lymph node removal: Right; Mastectomy: Right; Reconstruction (right): Tissue expander placement Chemotherapy 10/31/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 2/8/2017 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 4/22/2017 Aromasin (exemestane) Surgery 12/12/2017 Reconstruction (right): DIEP flap
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Feb 5, 2019 03:00PM StillHaveMyPride_orNot wrote:

Nope. Even knowing the cost I would do everything exactly the same.

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Feb 5, 2019 03:34PM Moderators wrote:

Tom,

We're so very sorry to hear of your heart-wrenching experience. Could you find comfort perhaps in the fact that you DID do everything in your power to help Sabrina -- even if she didn't see it. Giving so selflessly to help her ease through her transition (whether or not you were aware of the affair), should give you the satisfaction that you did show her true love. There was nothing more you could do.

We know it must be very painful and you must feel betrayed, and we are so sorry for all you've been through. We hope others will join in soon in lifting you up and giving you the strength and understanding to move on.

--The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...
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Feb 5, 2019 03:52PM LoveFromPhilly wrote:

dear Tom,

I am sorry for your loss and the betrayal you are feeling at this time. That must’ve really felt like a slap in the face after all the communications your two shared about trust and honesty.

I can’t speak for your relationship or for Sabrina, but what I do know that with grief it is natural to feel anger. I’m sure you’ve heard of the 5 emotions/phases of grief? Denial, Anger, Bargaining, Depression and Acceptance. It is normal to fluctuate in and out of these emotions and there is no set rule that we have to follow them in any such order.

My heart goes out to you.

Hugs!

Philly

Lung and Liver Mets 8/2020 Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/4/2017 Femara (letrozole) Hormonal Therapy Targeted Therapy Ibrance (palbociclib)
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Feb 5, 2019 04:28PM - edited Feb 5, 2019 04:30PM by StillHaveMyPride_orNot

Thank you for the support. Sharing all this helps. Being heard helps more.

Through counseling we have come up with a few theories.

1) Her not telling me was an assumption that no one would ever know and she wouldn't hurt me. Permission at this point doesn't necessarily mean no jealousy. Maybe she couldn't admit to me she wanted someone else because she thought it would mean something different in this particular time.

2) Chemo at her age (she was younger) caused early menopause and then tack on hormone and immunotherapy - I do not know and am not female/have not experienced any of this but I have read in some cases it can "ignite" different reactions in people.

3) I was experiencing anticipatory grief and she was in denial of her death. I was pulling away to not pressure her and maybe she wanted to be more normal. Or maybe she decided she was dying and "what the heck?" She just never told me. I also was not as, um, energetic given all of my issues at the time (hence the self hatred) and I will always wonder if I could have done more. I know logically how hard I tried, but that still doesn't remove the doubt.

I do not believe she would deliberately hurt me. I still believe she loved me. I still believe I was the most important person in her life. I wish every day that she died as comfortably and safe as she could have. I tell her every day that I miss her and that I love her. And that I am angry at her.

It is never knowing why that kills me. ANY reason from her would be better than this.

I do have this though -- In none of her emails to him did she ever tell him she loved him. She told me she loved me every day. In her final days, she only ever spoke one name and it wasn't his.

I forgive her for the act. I am having trouble with the lie. I can't imagine what it must have been like to face death and feel alone. No matter what I tried to do, I wasn't myself - it was obvious. If she needed someone to reach out to, I can't blame her for anything other than the secrecy. It will forever haunt me.

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Feb 5, 2019 05:01PM Polly413 wrote:

Tom - People handle the prospect of their own death in different ways and those of us who love a dying person of course want that person to show at the end that their bond with us is as strong as we ourselves believe it is. I took care of a man "Ted" who was dying of cancer. We were not married but we had been in the past and had been an enormous part of each other's lives for years after the divorce even though we lived in different states when he got cancer. He believed he had less than a month to live but in fact lived 9 months. I went to where he lived and brought him to my house by means of a harrowing plane ride where the oxygen he was on failed and so forth. And that was just the beginning of 9 months of stress and unpleasantness. He was young and the idea of death was more than he could handle gracefully. He was angry and struck out at everyone including me. His grown sons were upset with his behavior when they visited him during those 9 months. I was so upset that he was dying and then had to contend with all the bitterness when I just wanted to be close to him and comfort each other. I am going through cancer now myself and have determined that if I get a stage IV diagnosis I will do my utmost to be accepting of my fate and keep any bitterness to myself. In fact I can honestly say I have not cried one tear from the day of my diagnosis, through chemo and other treatment up to this day and that is because of my experience with Ted. Like your friend, Ted did bazaar things like complain to me that an old girlfriend who sent him flowers at my house included on the card the name of her current boyfriend. Whatever missteps your friend made during the dying process does not negate in any real way the joy you brought to each other. You took care of her because of who you are, not who she was there at the end. I grieved a lot when Ted died -- a lot-- and have no bad feelings about him now.I hope you get to that place eventually. Polly

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Feb 5, 2019 05:18PM edwards750 wrote:

Tom - you are such a caring guy. I know the secret is gnawing at you but try and focus on the happiness and love you two shared. I’m not a person who likes to leave things hanging or unanswered either but it happens sometimes.

You have suffered a lot of grief with the loss of family members and Sabrina. Give yourself permission to move on. It’s okay you did everything you could for all of them. That’s so admirable and unselfish.

I’m glad you are seeing a counselor and by the way I’m inclined to believe theory #3.

Diane




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Feb 5, 2019 09:43PM StillHaveMyPride_orNot wrote:

Thank you again. I miss her more than anything and anger will fade. I owe her more than that. I was told it will take years to work through this and I am not enjoying that idea. I have to believe that helping people doesn't have to end this way. I appreciate the advice and will check back periodically.

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Feb 6, 2019 09:44AM NotVeryBrave wrote:

That is such a sad story. I feel so badly for you. And her.

Maybe this other guy was just a distraction from everything. He was something that didn't remind her of her past or what she would be leaving behind. He was important in that short period of time.

You did all that you could. You rose to a challenge of many levels. You loved and cared enough to put her wants and needs first. That is commendable.

I think your anger is justified, regardless of what situation or agreement you'd had in the past. But her actions are also a little understandable perhaps.

I hope that one day soon you'll be able to look past this and remember your love and joy in each other. I can't imagine how hard all of this must be. I'm glad you've sought counseling. Take care of you.

TCHP x 6 with pCR. One year of Herceptin. DTI pre-pec surgery. Quit Tamoxifen after 3 months. Dx 11/21/2016, DCIS/IDC, Left, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (IHC) Targeted Therapy 12/18/2016 Perjeta (pertuzumab) Targeted Therapy 12/19/2016 Herceptin (trastuzumab) Chemotherapy 12/19/2016 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 5/8/2017 Lymph node removal: Sentinel; Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 9/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 6/25/2020 Evista (raloxifene)
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Feb 17, 2019 10:36AM StillHaveMyPride_orNot wrote:

I wanted to post an update - not really for anyone but myself.

The more I reflect on this, the more I think things needed to unfold as they did. Going back through my own emails, I knew what she was up to but I did not press her for details. More than once there are exchanges where I was upset she was so distant and silent to me and that I knew she had to be turning to others for support even though I was doing the "heavy lifting" so to speak. I didn't specify in what capacity those "others" were but it was implied. I had forgotten all of this in my self-pity.

If I had pushed more, she would have died alone and afraid. Let me back up a little. Near the end of her life she had a tumor which was putting pressure on an artery that was critical for oxygen supply and the result was she was short of breath all the time. It is ultimately why I admitted her that last time. Had I not insisted she go to the hospital, she would have died from this when I wasn't present (this was before she moved in with me). I am convinced of this. She began treatment for the shortness of breath and radiation for the tumor(s), which worked for a couple weeks while we organized her life and moved her.

If I had pressed her on the affairs at the time (there was more than one I have now found out -- a former co-worker also) she would have ended our relationship before she would admit to anything. She was terrified of any type of confrontation and would shut down or become belligerent if she were threatened with discovery. And if she had dumped me, she would have been alone when she needed help the most. Neither of the other two guys would have been there and she didn't even tell her family how bad it was. Both of the other guys were married with children at home so they weren't going to show up/step up for her.

So she would have died in her apartment, alone, because she couldn't breathe.

Consciously I know I would make the choice to stay with her and care for her regardless. It was better for her to die under my care and it was better for her to die thinking she wasn't hurting me, even if that was not true. So while I am uncertain if I made this choice for her sake or because I was in denial, I am hopeful it was the former.

And, I am happy to have found the emails where I told her that she had to come to me if she wanted help. I had forgotten that I had showed any strength for myself and remembered being powerless to save any of my own pride as I thought she was cheating. But I did stand up for myself when I told her I knew I wasn't the one she was turning to and if she wanted me to help her she had to talk to me. When those other two guys couldn't show up for her when she needed them to (obviously!) I reminded her who the person in her life was that was there for her and not just himself. I don't know why this discovery is so powerful but I actually smiled when I read those emails.

I "knew." I told her I knew. It didn't stop her but it did show her what love actually is and at the very end, when neither of the others even entered the room, I was there. I now believe she felt guilty and there was a realization in those moments. She never did say she was sorry but I never brought it up at any time she was in the hospital. I was not going to have her die during a fight and honestly I didn't even think about it at the time.

I know I was not able to give her all the attention she needed in the last year/18 months of her life due to all the other things going on (above) and I now have a better understanding of how scared she actually was and I know some of this was actually her not wanting to burden me further. I am not excusing her affair but reaching out to anyone she could find would be natural. The guys took advantage of the situation and I am trying to decide how to handle that. I also now believe her co-workers/friends knew what was going on and no one told me. So while revenge is not my nature, I think some shared information might be forthcoming to those who might want to know. :) I won't directly tell spouses who weren't ever present but I have friends, too, who likely don't know but should and you never know who might pass something on. 'Nuff said.

Nights are still terribly lonely and for an introvert like myself it will be a long road to finding another person (we don't go for groups) to share my life with - not even trying at this point. But I do hope that everyone here is doing better or at least finding peace and understanding with their own struggles. Thank you again.

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Feb 17, 2019 11:24AM leftduetostupidmods wrote:

Tom, so sorry you had to go through so much heartbreak.

One question: did she have any brain mets? Most of the time brain tumors can cause a lot of changes, not just in cognitive and physical function, but at the level of core personality, behavior, proper perception of ethics or priority, and more.

left this forum this time for good due to how stupid moderators are
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Feb 17, 2019 11:26AM StillHaveMyPride_orNot wrote:

No her brain scans all came up clean, even a few days before she died.

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Feb 17, 2019 11:43AM leftduetostupidmods wrote:

I will send you a PM sometime later this afternoon. There is a lot to be said here and maybe some of it might help you be able to find some peace.

left this forum this time for good due to how stupid moderators are

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