Vulva cancer

Affected by VIN (a pre-cancerous condition) or vulva cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

I wish you all the best and will continue to keep you all in prayer

elmslav
Posted by

Hey there my beautiful Vulvar Cancer and VIN Warriors, I want to wish all of you the very best in your journey with each other on this site, with your doctors and their teams and with our family and friends...do not be ashamed of this disease and spread love to all those in need of support and be your own advocate by writing and documenting all that you can to be up to date on your care and treatments.

I will post my "tips, advice and opinions" letter I have saved on my computer at the end of this post so you can copy and paste it somewhere so you can share it in the future and add to it your advice and tips.

I'm making this sound like my last post because it probably is. You see, I am a veteran here, and if you've seen my posts before you all know I've had my share of VIN and recurring cancer 8 times and spreading to my bladder, the after affects of chemo, radiation, 27 surgeries including the removal of my urethra, clitoris, lymph nodes, half my bladder and my story goes on and on. I truly believed that with my positive attitude and with God guiding me to be a glimmer of hope for all of you, I know that HE has kept me here on earth to help all of you that are just now beginning this nightmare or just dealing with your 2nd, or 3rd surgery and you need to hear that we are all different, heal different and have doctors that handle our treatment differently, we also all have very different pain levels and tolerances. 

So the reason I am leaving, well, I've tried to be positive and help all you lovely ladies with empowering words and tips and advice on care after treatment, surgery, etc. but I've had my posts tweaked, removed and pictures removed for fear of emotional distress to others on this site. WELL, the picture I posted was of my overnight catheter bag, you know, many of us come home from surgeries with a catheter for several weeks until we heal enough to have it removed. I never showed where mine came out of in fact I don't even remember the context at this point but if I posted the picture it meant perhaps I was having a bad day myself or I needed to let someone know how important our check ups really are as since my cancer spread to my bladder, half was removed and now my catheter comes out of my lower abdomen because my urethra had to be removed because it was full of cancer too. That is my reality, the cancer has taken so much from me and I don't want that to happen to any of you...I am just frustrated with my reality being censored and removed however I am one of the most positive role models on this site since finding it well over five or more years ago. I've been battling VIN and Cancer for 11 years now. I will continue on my social media v cancer groups and hope to hear from you all again some day. Until then...I will continue to pray for all of you. Please feel free to share and add to my tips list...

Sincerely,

Lisa from USA, MI

Lisa from USA Michigan

October2018
Posted by

Dear Lisa,

I am not sure you will ever see this but I just wanted to let you know how much your replies/support helped me through my fears/uncertainties during my initial diagnosis and treatment.  Thank you from the bottom of my heart.  I wish you well and hope that you will continue to perserve through this horrible process.

Hugs and prayers!

October2018

elmslav
Posted by

Oct2018,

Thank you so much for your kinds words and I am so glad I could be of help. I truly feel like this is why God has kept me around is to help other women realize how strong they are. I thought this site was to help others suffering from cancer or VIN which I’ve had it all too many times. The picture I posted that they removed and censored my post was a picture of my overnight catheter bag...just the bag on the floor in my bucket and you could see urine in my tube. You didn’t even know it comes out my belly not my urethra unless you’ve read my posts. Real life of cancer is it can spread; others can say breast cancer metastasized to lymph nodes, bones, blood, etc. but I wasn’t able to say that mine metastasized to my bladder! 

You can see I’m still upset and already crossed my own rules of not replying but I had to be specific about what picture was so “emotionally distressful” I sure am glad I got to meet all you lovely ladies. Please try to find me on FB but they won’t let me put my last name on here. 

Take care of yourself and stay diligent with all of your checkups!!!!

xoxo

Lisa S of MI

Lisa from USA Michigan