Jolene wrote:I'm sure there is another side to the story. I guess we all come to terms with our diagnosis in different ways and at a different pace with different life circumstances. Perhaps he/she simply needs some more time to go through the motions.
When I was first diagnosed with the possibilities of a temp bag, LARs and perhaps even a permanent bag, I went into a downward depression spiral. It was the darkest moments of my life and mind you, this was still in the process of me being a potential WW when I should be somewhat "happier" than most so to speak.
I visited this board countless times and came across posts by parents being grateful for the surgery and the bag. Some of them even gave up the WW option and opted for surgery anyway as it was far more important to make sure that damn tumour is removed entirely so that they get a better chance at watching their kids grow up than risking it all for a WW recurrence. The bag was mostly insignificant for them. Unfortunately, it didn't resonate with me at all because I have no children. Being on the WW list thus became my obsession.
I can appreciate how the love for one's own children may have helped parents conquer even the greatest fear and uncertainties and that's really awesome and heartwarming. I'm married but at that time it felt like even having a spouse was not enough of a reason for me to want to live on if I were to have a bag or suffer from LARs. I was fortunate enough to have access to a good counsellor and she made things a tiny bit better (only after confirmation of me going on WW).
If I have to go through the idea of LAR and bag situation all over again, I'm sure I won't be taking it well. Perhaps as someone without kids, nothing will ever reassure me that the bag is okay unitl I actually have the bag ? But I hope the day never comes and I know I will not be okay if it did.
I didn't have this option due to how Neoadjuvant went (it worked great but the remaining tumor was still pretty big). I recall my surgeon telling me about the potential for a colostomy - and she would make the decision during surgery. I had the training for the Ileostomy but it didn't really sink in. And then I woke up with a bag. My surgeon has offered a colostomy many times as I do have LARS but I would rather manage LARS instead of getting a bag at this time.
There is a strong desire to remain whole and an external device is a reminder of not being whole (before having it anyways). This is despite wearing glasses, and a watch that measures all kinds of biometric data. So I definitely can understand the desire to do W&W as I'm living through the alternative.
But I am quite happy to be alive and I'm pretty sure that I wouldn't be today without the surgery.
It is indeed a tough choice when you are in-between the guidelines.