Friday, December 4, 2009

Getting On With Your Life.

It's amazing how many people think that once you have finished treatment, you're done. That everything goes back to normal or at least the way things were before your dreaded diagnosis and hellish treatments. Not so.

I suppose this is understandable coming from someone who has never had cancer and dealt with the significant change that you experience emotionally. I think this is probably worse than the experience of going through treatment and I don't believe that life is EVER quite the same again.

This is even more the case in dealing with HPV related cancers. The issues of shame, guilt, depression and anxiety remain long after treatment is complete. The stigma attached to an STD/STI makes it difficult to openly discuss your situation. Often, you're relegated to a small group of people. In my case, this was mainly one woman whom I met through an anal cancer forum. I had been responding to questions on what was mainly a cervical cancer forum and simply could not get the support and understanding that I needed because although these individuals could understand the HPV end of it, they had no experience with the treatments, side effects and other issues specific to anal cancer.

To be honest, there was a short period of time there when I found myself getting upset when women would write in hysterical, or close to it, after receiving a diagnosis of HPV. They didn't have any lesions to be concerned about, no need for any procedures or more drastic measures only the diagnosis of HPV.

Knowing unfortunately in exquisite detail just how bad all of these treatments can be and to get a diagnosis of HPV induced invasive cancer is much different than a diagnosis of HPV as I'm sure you can well imagine. It was at that time that I just had to take a break. I could not provide the compassion and understanding that these women needed because all I really wanted to do was tell them to get a grip, that things could be far worse and that I knew just how much worse and yet here they were whining over the diagnosis alone.

There are certain aspects in dealing with anal cancer not experienced by others with HPV induced cancers. For one thing, having to decide whether or not to have a colostomy. This is a major life changing event and despite the true courage of those who have had this procedure done, your ability to control your bowels will never be "normal" again.

Sometimes during treatment for anal cancer but definitely afterwards, you deal with an inability to control your bowels at all. I spent countless days, weeks, months basically chained to the bathroom and afraid to step out in public for fear of an "accident". When you have an "accident" in public it is something that you will never forget. It tends to stay with you unconsciously and there is also an unconscious trepidation when you do go out in public even after you've managed to get things under control. That fear lingers in the back of your mind. You find yourself scouting out just where the bathrooms are regardless of the venue. Even if you are at home by yourself and can't make it to the bathroom in time those feelings of humiliation and an assault to one's self esteme still occur.

(to be continued)