Scared, scarred, and alone

Dear Tymayo, I am so heartsick to learn of the fear, pain and shame you have experienced. You are so courageous in sharing it, though. Speaking only for myself, I am in no way offended and feel absolutely clear that having this space to share what you've held for so long is a very good thing...for me, and maybe others, as well. I have read postings that describe my worst fears as well as posts that offer me hope, strategies for coping and encouragement. I feel grateful to be currently experiencing so much less of what you and others report here, and so much compassion for any and all who endure discomfort, uncertainty, worry, fear, frustration, pain, and yes, shame. My sense is that each of us reads what we feel up to reading and pass over reading what we imagine we're not ready to know is possible in this life.

I want to respond to your comment that you have been your own worst enemy. I don't see it that way at all. I see a culture, that has taught us, as women, especially, that certain parts of our bodies are not subjects of "polite" focus or discussion. This has kept too many of us from stating our needs and our fears, and from reaching out for care that we need and deserve. I went a lifetime with urinary incontinence that, when I finally asked for help as a young adult, was "treated" in ways that traumatized me physically and emotionally, and resulted in my hesitance to seek further care for over 30 years. It was much easier to see my situation as a "personal failing" rather than a medical condition deserving care. Upon finding my way to this Mayo Connect resource, I learned that there are whole departments dedicated just to what I've been hiding and feeling shame about all these years, and care available that is respectful, tender, kind, responsive and (I hope...waiting for clearance post-op to give that part of my surgery a comprehensive test in real life but preliminary signs are promising) effective.

That this support option is here is a gift to me and I hope it remains one for you, as well. Just as others' honest sharing of their worst nightmares has been a gift to me ( I learn that one can survive and cope with much worse than I currently face, thereby giving me courage to stand tall in the face of my obstacles) your sharing of your experience is valuable and will help others, I am certain. I arrived here first seeking only information and have found bomb-proof support and then excellent care at the Mayo Clinic as well. I wish you whatever support and information you need and hope that you, too, will find care that brings you hope of relief and closer to a life you can enjoy living most fully.

I send so much gratitude, care and hugs your way...

Words don't do justice to how much your response means to me. Your analysis of the culture and that you shared the same reaction makes me know I am not alone and not as "at fault" as I have always believed. Mayo Clinic literature and now this forum and finding someone like you who truly understands are life changing finds for me. Thank you is inadequate but the best I have. Thank you.

More than adequate. Thank you, tymayo. I hope you will keep all of us posted about what you learn, how you choose to move forward and how it unfolds for you. Many hugs...

Tymayo, I am so sorry you have dealt with this for so long. I was very lucky and mine was discovered early, I had a partial radical vulvectomy, and honestly can hardly tell a difference except that irritating lump is gone that I had written off as a scar being inflamed. My Gyno's NP ordered the biopsy and within days I was sitting in the oncologist's exam room. Everyone I dealt with has been caring, professional and understanding. I wish you could get that kind of care.

@tymayo I too am dealing with vulvar cancer. In the past 6 months I have had surgery, chemo and radiation. I also live alone and the bathroom issues were described perfectly. The crying and pain caused me to stop eating solid food. It was terrible. I know it was hard for u to put your post out there but I am thankful to hear from someone else out there that has the same cancer. Remember u are stronger than u think.
Bobbi

Thank you for your kind encouragement, @bobette1. It really helps to know that I am not alone in some of these side effects, even though I am sad to hear anyone else has to deal with it. Coming across the Mayo Clinic low fiber diet has been a game changer for me. I still struggle with pain but the worst, the impactions, have mercifully stopped.

@sillywabbit I am so relieved and glad to hear that your initial surgery experience has been so positive. While I was traumatized by mine, that is on me. The takeaway I hope others have is don't be traumatized and don't neglect follow-up care and regular checkups. I did not and it came back with a vengeance. That and circumstances (fear of COVID, etc) led to it increasing to a size that is now spread down my left thigh and left me virtually bed-bound. Don't be me.

I am facing a radical collectors with skin grafts and I am so afraid this is my third surgery can any one give me hope and some wise words of wisdom

Sorry for the spelling I am facing radical vulvectomy ca someone give me hope

Sandra,

I do not have the same medical problem you are experiencing, but I have had advanced cancer and I know what it is like being alone. Friends and family just stopped coming around, calling, or texting. If you need to vent, I am here to listen and support you. I am sending all the strength and courage your way to face your upcoming surgery.

Jennifer