I'm here anytime you feel like talking...have fun with daughter and children.
Your letter so touched me! Thank you for sharing your experiences. You have had an unbelievably traumatic time since with the death of your son. I can't even imagine how painful that must be and send my heartfelt good wishes for the courage needed to cope with all that.
You are so right about taking a day at a time.....I am off to visit my daughter and her two wonderful children now despite anxieties about the unpredicable state of my bowel.....grab it while you can eh!!
Thank you once again.
Good afternoon..
Just popped in and saw your post.
I am happy to share my experience with you. And thanks for chatting with me about yours. Our treatment sounds similar. Mine was done @ M.D. Anderson in Orlando: after referral from the surgeon who diagnosed it.
I am grateful for the high quality of care, too. My family had to chip in to help with some of the expense, as Medicare didn't approve one of the chemo drugs and a couple of other things.
It was 6 weeks of 2 bags of chemo hanging from my chest, and radiation 5 days a week. Then a week in hospital to treat c-dif and kidney failure (caused by chemo).
Your are so right about the after care ....patchy is the word. I felt I'd been dropped into a wasteland. As I live alone, it was a struggle to keep my spirits up as I went thru one thing after the other...calling surgeon's office for reassurance, making appts with urologist/gyn..to get answers to damage...I felt very much on my own with it all.
Fortunately, after one visit to gyn who repaired surface damage to vulva...I was referred to a therapist @ hospital. Her assistance was part of program and no charge...as Medicare doesn't pay for therapy either.
The cause of cancer is HPV. How I got it wasn't of much interest to specialists. I am single so have had several sexual partners. Also have the herpes virus. No one I talked to gave me a straight answer, actually...only that the virus is transmitted sexually...and can live in system for years before causing damage. The question is moot..as one doctor said heh.
The sign that was caught @ the colo/rectal surgeon's was a small genital wart. It must have been close to invisible as wasn't noticed when I had first colonoscopy..lol. Or in any physicals...
We have to carry on. I take life a day at a time now. Believe our experienc definitely changes us..and now just physically. I'd like to think we are braver and therefore able to cope better with other life events.
When I lost a son (he was shot by his dad in a dispute) in 2010, I was devastated. And confused. Why him? What is the universe up to?
Remember attending the celebration of his very full life (in Depends..lol) and having what must have been a panic attack after @ Starbucks...more drama..as I was rushed to emergency room...uncontrollable diarrhea and vomiting...awful stuff. Which I overcame.
This is probably more than you need to hear....what is most important after life changing events....is to find joy in each day. Not so hard to do really.
Best to you....hope I answered a few of your questions...I am too lazy to scroll up..so I may have repeated myself...
Sorry lost that half way through!
I am in UK and had my treatment under NHS in a London Teaching Hospital. It has been very thorough as I volunteered to go on a trial they were doing.
The follow up on after effects....and there are several....has been more patchy. But of course I am for ever grateful for their cancer treatment!
Where were you treated and what was that experience like? No worries if you don't want to share that!
Very best wishes and thanks again
Did they give you any idea why you got anal cancer? My oncologist thinks it is probably a virus. I have had genital herpes since my mid forties and possibly they are related. The herpes society denies this so goodness knows. He always slightly implies it could have something to do with sexual practices but actually I have been in a 32 year happy relationship!
The reason for the colonoscopy is to test the action of my bowel as the constipation has become acute despite going to the loo every day! Apparently damage can occur many years after pelvic radiotherapy. I felt unwell but it only showed up on a CT scan. Could be a blocked valve at its simplest. Guess your medic was right in keeping an eye on it anyway!
Glad to be here for you. The wait is anxiety making ...I should check in with my doc...but think I am well...and don't look forward to another barium enema..bleck!
When I first posted here..no one...I mean no one could relate. Depressing...feeling so alone. Then I did hear from someone ...but think it was a sister who had it and was in hospice. It is still a rare cancer, but my doctors felt it would be an 'epidemic' if ppl ignored. And young ppl need to be vaccinated. Jumping down from soapbox now!!
Oh..I will share another thing I learned. I asked a resident once why I needed colonoscopy/barium enemas when I had no problem whatsoever with colon....he said it is a safety measure....as (in his opinion) we are at higher risk for colon cancer...
I'm hoping you will get past this, and nothing is amiss with your colon.
Best..
Much appreciate your response. In all this time I haven't met anyone else who has had anal cancer! It is quite unusual in I think.
Great you have got to the 5yr post...quite a marker in the statistics. I am a bit daunted having to wait 7 weeks for the colonoscopy and dreading what they might find! Was feeling so much more confident that I could put it all behind me......
keep up the good work. I find I have to be very watchful of diet too.
Best wishes
Hey there...
I am 5 yrs away from radiation and chemo for anal cancer (stage IIIb), and know that I have to be mindful of regularity. It is all a balancing act really...I take fiber and stool softeners ...but may need mild lax off and on. Then again...we have to watch for overdoing in that direction and having diarrhea...most embarrassing.
Some of us take probiotics..I did for the first year or so...but a resident told me it was probably not essential at this point.
As to a colonoscopy....do a prep with Miralax (spelling?)...very mild...and you really won't be all that uncomfortable. It is not acidic..so no worries.My doctor didn't care how I cleansed the colon ...just that I did it.
The procedure is nothing. You are put to sleep and wake to hear your doctor tell you what is what.
Back to bowel problems....we have to be aware of what we eat and staying regular...as anus has changed due to radiation...you alread know that...scar tissue replaces normal...no sphincter..etc. I think it is simple. We must be alert to changes ...i.e....no bowel movement for a couple of days? Take action ...Too many in a day...again, tweak diet and keep on going....
Best to you...