Frustrated and TMI

Since Friday, when things took a turn, I’ve been saying that I don’t believe I have pneumonia or anything else not related to my disease. I believe we need to treat the disease. Let me go home and I’ll work with the Roswell team. The answer from multiple people is that they won’t send me home until they figure it out as I’d end up back here. I even messaged my oncology team asking questions about the new chemo so I could be prepared. I was told we would discuss it Tuesday morning. 

My words have been ignored by this hospital until tonight when the infectious disease doctor came in. He listened to me and my history of being treated for pneumonia over the last few months. Then he said it is not his area of expertise, but he trusts the patient especially when what the patient is saying aligns with what the scans are showing. Therefore, he’s coordinating a meeting between this hospital and Roswell tomorrow. Thank you!! I finally feel like I can get off this merry-go-round. I fully expect to start a new chemo on Tuesday. This really isn’t great news, but there is no looking back. Make necessary adjustments and move on please. We need to find a solution that works. Fast.

Here’s where you may want to stop reading. 

Earlier in the day, I experienced a horrendous bathroom fail. Decide now if you really want to know more…

So when you lose your hair, you lose it everywhere, which is relevant. Everywhere. I’m not going to explain why, but let’s just say with my nose, I need to have tissues readily available as there isn’t any warning when I need to blow my nose or where it is going to go… left, right, both, fast, slow. Surprise!! I need to be on alert.

Back to the bathroom. I made a mess last week because the commode sat about 4 inches over the top of the toilet seat allowing liquid that was going sideways to escape. I need the commode because I can’t have less than a 90 degree angle between my torso and legs.  I asked for a funnel for next time and they didn’t have one so a nurse suggested using the commode with the bucket attached. Ok, it will require extra cleaning, but it fixed the problem…until today when the bucket fell off!! Seriously. The bucket and contents dropped to the floor. Mid-use! I was mortified.

The male nurse came in and put the bucket back on (while I was still sitting there) so I could finish my business. He left  and it fell off again!! How awful! There really isn’t any dignity in this disease.

But then it gets worse. The nurse didn’t think I needed to wash up. I disagreed so he got me a fresh gown and socks, but he was going to put them on without a visit with soap and water!! And, when he cleaned out the commode, he threw the waste in the room garbage can. Seriously? Did that sound like a good idea? Sigh. I tried to be respectful, but after multiple attempts, I did succeed in getting the garbage changed.

I worry I’m off base when something seems obvious to me.

I’m getting punchy. I really need to go home.