I have had Barbara the butthole for well over a month now. I have already had my first check of the reconnection done during surgery. Shockingly, my surgeon was very available for a scope under anesthesia on Christmas Eve. And so far, so good. What has not been good has been figuring out my ileostomy supplies. My surgery was on November 25th. I had my first visit with a home health nurse a week after being discharged from the hospital, December 4. My home nurse ordered supplies for me. By this time, I may have changed my bag twice on my own. So what kind of supplies I needed, I really didn’t know. Anyway, fast forward to December 20 and I have two bags left from all the samples and freebies I was sent. I’m just waiting for my order to come because the order was placed December 4. I asked the second home health nurse, who came six days after the first nurse, about my order and was told they would follow up with that. So on Friday, 12/20, I called the wound nurse to see if I could get a few more supplies. While she was willing to provide supplies, she wanted me to figure out why I hadn’t received my order because according to her, I should be getting all my supplies from home health. I called my initial home health nurse who ordered my supplies and asked if he knew why my supplies were delayed. He said my doctors office had not yet approved of my supplies. Umm, what? But he gave me the number for Edgepark, the supply company and told me to clarify with the surgeons office because he is not to provide supplies but rather is a liaison between client and supply company (I told this to my wound nurse later and she was audibly annoyed. Not trying to start a nurse war). I then called my surgeons office and left a message wondering if all required materials were sent to Edgepark. Next, I called Edgepark to figure out where my supplies were. Long conversation, short: my home health nurse ordered above a financial limit provided by insurance so therefore insurance needed extra paperwork from the surgeons office to approve the amount of supplies and so insurance was not authorizing Edgepark to ship my supplies until clarification came from my surgeons office. Still with me? Now, why didn’t Edgepark call me to say “hey, you need to check with the surgeons office because your insurance has not authorized this shipment.” Nope. So in a panic, I am calling everyone to figure this out. I ended up canceling half my order just so I could receive supplies sooner than later and meet the insurance requirement of what has already been approved financially. Oh, and it is also the busiest shipping time of the year. Thankfully, I got expedited shipping. My supplies finally came on Monday night. (Yes, I did call back my wound nurse to get a few bags to hold me over, just in case. Add a hospital stop to this saga). When I opened the box of supplies, I was thankful to receive my bags. But then half the order, and half the expense, was stuff I had never used before nor had I been shown how to use. Talk about frustrating. So arguing with Edgepark to realize what was ordered for me was majority of what I didn’t even know how to use. And what I did need (adhesive skin barrier) was not ordered. Because guess what, I was never asked what I wanted to be ordered. It was just done and nothing was clarified. Hindsight, I should have asked what was ordered. When it was ordered, I was barely mobile from surgery and these thoughts were not swirling in my head. Getting out of bed pain free and not getting stuck on my laundry room floor after changing laundry were more of a priority to me. Hence, I’ve learned the hard way. Advocating for yourself is hard. Going against the grain of treatment is hard. My keto diet had several nurses very concerned and expressing their concern for my safety when I was in the hospital for the major blood loss when going to the bathroom. And when I chose to have my radiation done in Anderson, I received a lot of pushback from my oncologist. To the point I felt pressured to do what my oncologist wanted and not what I wanted. Thankfully, I had a friend who wouldn’t let me settle. One of the best decisions in my cancer journey was my radiation being done in Anderson. Worth all the extra gas money. 

So what is next? My oncologist said I will have bloodwork every 3 months for 2 years and CT scans every 6 months for 5 years. Hard to think that far down the road. It makes me feel overwhelmed. And I feel a little unraveled wondering if I will have a looming anxiety about a questionable scan. More to work through. But for now, I will have another scope under anesthesia January 22nd. I will also have some sort of liquid test of the reconnection to make sure there are no leaks in the new piping (easiest way to explain) on January 23. The surgeon mentioned end of February for reconnection and that is so, so close! My neuropathy is still an issue but now I am so used to numb feet and hands, it’s just a matter of adapting. Menopause is getting better with hormones. I am still emotional and I wake up at 5 am ready for the day, but menopause did get me out of taking a pregnancy test right before my scope. So lets call that a perk. But we keep on keeping on. I am continuing with red light therapy and hyperbaric oxygen treatment as well as continuing to increase my physical activity since surgery. Doing what I know is going to benefit my body and prepare it for another surgery. Because another surgery is coming and I am really looking forward to telling Babs bye-bye.