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A community of cancer survivors supporting each other.

I Am So Sorry It's Been So Long

Hello everyone. So I had my surgery November 8th and it's been hell. When I woke up I was in pain like I never imagined. I had a abdonimopeerineal resection..and the nurses said they had maxed out my pain meds in recovery and they couldn't do anything else and it felt like they hadn't given me anything. I am still now in a lot of pain it hurts me to sit more than 5 minutes which is why I haven't been here. But I have felt bad for not posting any update. The surgeon feels I have nerve damage from radiation and with the surgery over the damaged nerves is why I am still in so much pain. They put me on gabapentin and they have increased my dose which has helped but only when i am laying on my side..if i walk or sit long it still causes me pain even with the meds. I am also on oxycontin and percocet although I rarely take the percocet only when it gets really bad. I am on chemo every month 5fu and cisplatin if I spelled that correctly. Next chemo is 16th. Having bad issues with fatigue and thrush and mouth sores. According to my surgeon my wounds are healing well but very slow. I had a new wound care doctor come to my house and she was shocked when she saw my wound. So was I. I only looked at it the other day because it was hurting and it is just a huge open space..it looks like they took out the whole right side of my vagina and I just wanted to cry. The surgeon didnt tell me that was even a possibility. I was already not happy about a colostomy..but now even if I ever did recover from this no one will ever want to date me. And this has been so hard to go thru alone. I just have a big open space vagina..rectal area just open. My wound care doctor said she never saw anything like it and with the open space it is exposed to oxygen increasing my chance of recurrence. She is going to be coming twice a week and she said the only thing she can think to do is make a saline and honey salution to spray in there. She said right now she doesn't want to decrease my quality of life with packing which is extremely painful for me. I am really angry with my surgeon for a variety of reasons I may post later that is a whole nother post. So I plan to try and get a second opinion hopefully at Mayo clinic. 3 months later and I am still in pain, still a lot of drainage and some bleeding. I haven't had any scans yet to see if chemo is working. But just wanted to send you all an update. Again I am so sorry for taking long but I just have been not up to sitting long at my computer. But I will try and post more it is not as bad as it was but still hard. Hope everyone is doing well

3 people threw a punch at your cancer.
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Oh Nicole, I am so sorry. I remember the pain right after my APR. But my dr did not give me the hysterectomy and my cancer came back. I am praying the surgery removed all cancer at original site and chemo kills cancer in lungs. Is your whole abdomen stitched up? Mine healed pretty quickly. I wonder if the chemo slows it down? I honestly cannot imagine the who open area you describe. I agree a second opinion is in order. Have you considered md anderson?
hugs and prayers,
Betsy
Nicole -- I have been thinking of you lately. So sorry to hear that things are not going well. I can't offer any advice, just lots of good vibes and virtual hugs. Please know that you are not alone. We are with you in spirit and you are always in my thoughts. I know I am not close, but if there is ever anything I can do from a distance, please don't hesitate to ask.

Many many hugs!!!
No need for apology. I have missed you.
They are rebuilding people sexually, it would seem they could rebuild the original. This is a delicate time, I would push that wound care doc to do some research for you.
I tried out a very light weight lap top, it didn't have ability for a floppy, but, I was wondering if you have wifi, that you could use a laptop?
Hugs Jean
Nicole, just can't take this all in...some good suggestions in these other comments...get that second opinion and tell that surgeon what you think!

I hope your surgeons can help reconstruct your vagina, and
some day there will be the right person to share your life with you and there are many ways to share love. You are a strong and resourceful woman! HUGS
Easterly, Thomas like this comment
Nicole,
I don't even know what to say...I am so sorry that you are going through this. I pray that I never have to know how you feel.I can only imagine the toll that this has taken on you both physically and mentally. I agree that seeking a second opinion would be a good idea. I have heard great things about MD Anderson and have already decided that if my cancer returns I will be heading to Houston. I pray that this hell that you are going through has slayed the cancer. Please know that I will keep you in my prayers.
It is really good to hear from you, but oh, I am so, so sorry that this journey is pushing you to the limits. It's good that you have a wound care doctor and I hope she will be able to help you get some relief from your pain. My heart goes out to you and I send virtual hugs and prayers.
My heart goes out to you Nicole, I have been praying for you and worried, so thank you for bringing us up to date.
Back when I was a nursing student, I encountered my very first anal cancer pt, a young 40ish woman. Her wound was also large, that is the way they did it, and it healed by granulation, (filing in). We had to pack it daily. But the one thing I remember is that she got in a whirlpool sitz bath to which we added some Betadine solution, and that stimulated healing as well as was soothing to her. Not sure if you can avail yourself of that, but it sure seems plausible. They have everything in the medical world to rent these days. Speak to the wound care nurse and see.
The person to see would be a plastic surgeon who is expert in this type of reconstruction. Your doctor should have discussed all this with you, I am so sorry and am furious about his treatment of you. Truly, you should have been better prepared. Mayo in JAX may well have this type of specialist. Here is an article I found. The authors will know all about it, and maybe one is close by. It will take a little time to look up each one, but hopefully this will distract your brain from the pain. It works in Lamaze natural childbirth, right? Worth a try. I'll look this evening and see if I can find them too.
https://www.ncbi.nlm.nih.gov/pubmed/15827789

I will keep you in my prayers, for sure. As for dating, cross that bridge when you come to it. We are way more than our vaginas, girlfriend!
Sending you a huge virtual hug {{{X}}}
Easterly, Thomas like this comment
Nicole...I have been thinking of you & wondering how you've been. I was wondering if you can go to another doctor in the area versus MD Anderson as you sound like you're in incredible pain & need a second opinion asap. Perhaps there's a patient advocate at the hospital who can help you.
I am so sorry you are going through this. I wish there was more that I could do and I hope you're kids are helping you through this.
We're here for you...Hugs...Lisa
Nicole, forgot to ask you, can you get some MJ prescribed now that it is legal here?
Nicole,
Wow, so amazing to hear from you today as I just wrote you a letter last night! What the hell, you have been through the wringer. I don't understand the plan of healing progression. What has the surgeon told you to expect? I'm so sorry you are suffering so much. A second opinion right may bring you some relief. I have read about the healing, antibiotic properties of honey. That sounds good. The pain has to be reigned in for you to get the proper sleep to promote the healing. Sleep and meditation will help you heal. Doing a laying down meditation of breathing will help calm your nerves. A long slow deep breath in, hold it, a long slow deep breath out. Try for a count of 6 breathing in, hold 4, release for 6 and breath in again. Work up to a round of 20 repetitions. When you hold your breath, it releases oxytocin, the love hormone, which will help you feel better, calmer.

I'm so glad you posted, we have all been so concerned about you. Please know you're in my prayers and I'm asking you be connected with those who can facilitate your healing. Bless you and stay in touch.
Bless your heart!! Sending prayers your way for healing, comfort and recovery!!! XOXO, Lenae
I am so sorry. Sending hugs, love, and prayers
I can't believe that you would even think about apologizing to us!!! I have thought of you often and hope you are hanging tough! Praying for healing for you. Thank you so much for taking the time to fill us in on your journey. We are with you!
You should not apologize about anything. I can't imagine what you're going through. Just know you have a place here to rant, rave, vent, ask for advice, etc. Thank goodness we have this blog. Please let us/me know if there is anything at all I can do to help. I'm in CO but I can make phone calls and do research. My heart goes out to you.
Would a barometric chamber help healing? I seem to remember various folks speeding up healing through that.
Tyndall likes this comment
God bless you. There has been some great advice posted. I don't know if the whirlpool baths would help you, it's worth discussing with your CR surgeon. After my surgery, the had me get into the whirlpool every 3 hours for 20 minutes, once home 3-5?warm baths daily, that did help with the healing, but I did not have an open wound. I can't imagine what you are going through, surely there is help out there for you. I agree with everyone on a second opinion. The only advice I care share is what our BFAC family shared with me, go to MD Anderson. It was the best thing that I have ever done, they have access to everything and state of the art equipment. I know it may sound impossible to travel in your condition, they do have air ambulances and there are resources available to cover the expense. I wish I could help more, I will send you positive thoughts and prayers. I know it's rough, yet you have been though so much and are a very strong woman. God will see you through this difficult time, just don't give up, you can do this. God bless you. Ann
Thomas likes this comment
Thank you so much for taking the time to write. You certainly don't need to apologize! I am so sorry to hear your struggles. Lots of good suggestions here. I will say that the body is amazing and it tries desperately to heal itself. I hope you find some relief soon and the healing will speed up. And I agree with Tyndall about the vagina :) Be persistent with your care - ask questions, seek a second opinion. Prayers and hugs to you!
Nicole I so sorry your still going through so much.. Its so good to hear from you my friend. Please know I am praying for you.. hugs and love and always prayers Sabina
Nicole, I just thought of something else, not sure if they will, but what about a pain patch? You change it every 72 hours, and it is a steady dose through the skin, much better than pills.
Thomas likes this comment
Nicole, I am so sorry this hell is upon you. The pain you're having is beyond imagination. If you need any help to get more and better medical assistance, I will fly to JAX and do whatever you need. I love dogs, adopted my most recent foster dog, and can help with your "crazy" fur baby. I want so badly for you to find The Best Doctor in the world to help you get past the pain and to speed your recovery. You are exceptional. And, you're traveling a path to NED. You will get your life back to a place of peace and contentment. Trust in your ability to do that because, as I said, you are obviously exceptional.
Nicole, I am concerned about your wound and still taking chemo. I had the same thing happen to me. It took almost 6 months before I could sit down due to the wound. They had to wait to do chemo because of the wound not healing. I too am older but feel like you do with the colostomy about anyone wanting to date me. But I try not to dwell on that matter because I am still fighting cancer. I also am on my own which I thinks makes it harder due to the fact there is no one to hold you or be with you. If you ever want to talk please send me a message and I will even give you my phone number. But you might ask the wound care person about taking chemo with a wound that isn't healed. Good luck!! Love & Hugs to you.
DeAnna likes this comment
Nicole - I have been thinking of you as well. As I may have shared with you my mom had APR with vaginal reconstruction. At the time of the APR surgery, the plastic surgeon stepped in and reconstructed the vaginal area with a flap so it was done all at one time. He took a piece of skin from her thigh I believe, and totally reconstructed the area. I am so sorry to hear about your situation! I wish I could help you in some way. Please try to get that 2nd opinion when you can. Love to you my dear.
Nicole, I'm so sorry you are having to go through such pain. Hang n there and know we are here when you want to share.
Nicole, I just saw this post. I am so sorry and cannot imagine what you have had to endure. I hope that now that nearly a month has passed, things have improved significantly. You're in my thoughts and prayers.
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Vital Info

Posts

March 22, 2015

Flagler Beach, Florida

March 10, 1973

Cancer Fighter

Cancer Info

Anal Cancer

Stage 3

Colostomy

April 20, 2015

Started with itching first 6 months. I thought was a hemorrhoid. The last 6 months experienced excruciating pain after BM's and in between that lasted hours. Went to ER for severe pain was told I had anal fissures. Also my vagina swelled and started bleeding and wasn't my period. Thin stools and rectal bleeding.

Mouth Sores, fatigue, nausea

Burns, fatigue, bladder irritation

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