Day Forty!
**This post was transferred from the now defunct "The Long Ease" blog.**
Two days ago, I said something to the nurse at HBOT about being almost done and she mentioned the fact that my insurance had approved 30 more sessions after the initial 30. It sent me into complete freak-out mode - I'm not going to lie. I think I had been getting through all of this stuff knowing that there was this countdown. This end date. I felt completely blindsided by her news. Did I HAVE to keep going? What would they say at work? Can I afford to keep getting these tiny paychecks? SHOULD I keep going? Would more be better, even though I am already feeling so much better?
Two days ago, I said something to the nurse at HBOT about being almost done and she mentioned the fact that my insurance had approved 30 more sessions after the initial 30. It sent me into complete freak-out mode - I'm not going to lie. I think I had been getting through all of this stuff knowing that there was this countdown. This end date. I felt completely blindsided by her news. Did I HAVE to keep going? What would they say at work? Can I afford to keep getting these tiny paychecks? SHOULD I keep going? Would more be better, even though I am already feeling so much better?
I had a million questions. And the problem was that NO ONE can answer them. The doctors at the Wound Center seem to know basically NOTHING about my condition. The questions they've asked me in the follow-up sessions I have with them every week or two are useless. And then the Urologist didn't really seem to know much about the HBOT - it took us most of a year to get him to agree to send me. And now he's gone and I don't have a new doctor, and somehow finding one, figuring out an appointment wherein I do what? Explain my entire history to someone else and expect them to be able to just have an answer? Doesn't seem likely or realistic. I'm also afraid, based on the locale of the damage in my bladder, to just have another cystoscopy (the procedure where the look inside the bladder with a tiny camera) because I fear further damage of the healing area...
The news was just terrible, to be honest. I was so unsure. So overwhelmed. I felt completely alone with my rare condition that I got in a rare time-frame in a rare spot and in a rare way. I searched the internet for ANY first-hand accounts or blogs from someone who had been through these treatments for this issue. And after digging through what little info I can find, most of which is all extremely outdated and overly technical medical writing, I was able to find ONE person on the entire internet writing about their experience with this. Me. My own damn blog. That's it. Completely alone.
After some time and some serious thinking about what continuing right now would mean, I chose to be done with it at the initial forty.
Here's why. I feel better. A lot better. Urgency is basically non-existent. Pain... maybe three times in the last few weeks has there been any at all. I have to trust myself. Not only because there is no one else to ask, but because coming to trust my body and how I feel is such a huge part of the post-cancer life I now live. And I feel like the stress of trying to continue becomes more stressful than additional treatments would be beneficial.
And I could be wrong. And maybe, if I am, I will go back and do more again in the future. The nurses said it happens and that I'd always be welcome to return if needed.
So, that being the case... today is the last day. The last one. My last morning of forced HGTV viewing.
It will be so strange to go back to regular mornings tomorrow...
Wish me luck!
Xxo, Phoebe Marie
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