A friend asked me what I wanted my husband to know about my breast cancer. I literally can not stop thinking about it. There are so many things I want TFO (my nickname for my husband) to know about this stupid dumb breast cancer. Since she asked me over 5 hours ago, I haven't stopped thinking about it. I clearly need to write it out. While I do not regret anything he did there are many things I would want him to know or really understand looking back for sure.
First, know that my husband did the best he possibly could. We had no idea what we were doing then. NONE. He is a fixer, like many husbands, and he wanted so badly to fix this when I was diagnosed. He could not figure out how and that was frustrating to him.
That is the first thing: I would want him to know he can not fix this, ever.
This was not his fault or mine. There is nothing he can do to ever make this right. Nor can he ever really say the right thing. I am not sure if that was harder on me or him.
Which ties into the second thing: saying nothing is sometimes the best thing to do.
I think we sometimes want to say just about anything but in truth, the wrong thing comes out which ends up causing pain to everyone. A simple hug or shoulder to cry on is the best and all we need truthfully. Doing that would have saved many shower sobbing I know because asking me "what is wrong" as I sit with drains or radiation appointments is not really what he meant and not what I wanted to hear. We both know this now. At the time TFO did not know what to say, and thought he needed to say something but all I needed was him.
I want TFO to know that even 5 fucking years later this body is not what I envisioned.
The scarred, mutilated version I am left with is something that is difficult for me to come to terms with. That while my husband loves me all of me, I am still angry, hurt and sad that what I had is gone and I am so changed. That I can feel the way I did and that I am left with something I had no choice over cancer made me. Yes, I have made progress through this but the weight gain and the scars still creep in under the sheets. Add the fear that any moment it could come back and my mind goes very dark. Cancer is a mind fuck no one warns you of yet they leave you to figure it out after. I want TFO to know that part. That I am still processing this whole thing and I need time to build it back together.
My husband should know that these stupid pills I take to "lower my risk" also add to daily joint pain which is also a daily reminder that I even had stupid dumb breast cancer.
So while he may forget about I think about it daily with the pain, the scars, the fake boobs- it is all a reminder. I have changed because of this. How could I not? I have changed so much but I am still me. TFO needs to know that breast cancer screws with your hormones so while I may seem out of whack I am! I lost my breast, my ovaries, my uterus, everything. Then I take a fake hormone to block any other hormones trying to get in. It is a major adjustment. And I am tired, so tired.
TFO should know I am sorry.
Why sorry you ask? Because there is a layer of guilt. That I did this to our family. That for a year and now for life I put our family through surgeries, radiation, doctor appointments, drains, more surgeries, scans, and fear so much fear. That our boys were robbed of innocence at 12, 10, 6 and 4 years old. It is my fault that on their medical records it will say a history of "cancer". That for the rest of their life they will live in fear that something will happen to their momma or that they will get sick. I am so sorry. And that is a part of stupid dumb breast cancer my husband should know. One that shatters my heart.
My husband should also know that because of breast cancer I broke my filter right off.
I want people to understand that less than 7% of funding goes to metastatic research or worse 4% goes to pediatric. My eyes were opened because of this diagnosis. My husband should know that I will bare my scars, not only for myself but so that the next person diagnosed can see that you do heal, the drain holes to close up, that you do get through each step. When others relate to the images or see me they connect and validate my emotions and I heal a little too. Then we are both not alone. I have been there through it all I refuse to let the next person be in that bathroom crying alone.
TFO should know that while I may not always need him to fix me
, I do need him to shine my tiara, for life. Even if sometimes it is from a hospital bed.