(1) “The needs of the patient come first.”(2) “Nothing about me without me.”(3) “Every patient is the only patient.”
Today I started the morning at the the gluteal crack of dawn. It began with a 3T MRI after which I switched to water intake for a SBRT planning session. Gotta pump up the bladder ya know. This took place at John Muir Cancer Facility in Walnut Creek California. Moving here and taking care of my health via this network (I use Concord for most everything) has been one of the best things I ever did for myself. The vast majority of the of the staff, techs, physicians, and RNs have been very kind, empathetic, understanding of my fears, patient with them and just down right lovely human beings who are willing to work with my concerns while getting the job done. My specialists (oncology, the 1st radiation oncologist who did the implantations and urology) have been with different practices or have their own practices that are associated with Muir, but virtually everything else I've had done has been at Muir and they really have been quite good. That said, my initial experiences with their radiation oncology department have been less than stellar after couple of difficult situations that I feel were largely failures in communication.
After the new MRI is done with an empty bladder, one switches to a urethral CT scan and full bladder. Now I'd read that having to "hold" so much while the session took place would be really difficult and uncomfortable. I had no problem and, while I could certainly have relieved myself, I was not uncomfortably "full." The insertion of the dye into the urethra was the "worst" part. There was discomfort and pain, but it thankfully didn't last terribly long. More transparency on that as well as a physician that I'd met more than 45 seconds prior to the injection of stinging/burning substances into the opening to my penis......as I'd requested....more than once, would have been appreciated. Even if he couldn't have met with me while I was clothed and sitting upright, a simple comment by the physician such as, "Hey I did read your email and I understand you really don't care for this and have had bad, past experiences. I can't promise I can make it painless or without discomfort, but I will do my best to make it quick and I understand your concerns." That was my only real complaint about the physician (I mean we barely spoke for a minute before I was gasping and biting my lip so how do I even begin to know what he's like?). Maybe next week we can take 5 minutes for a conversation while I'm sitting upright and clothed more or less. Communication.
The Rad Onc Nurses could have perhaps payed a bit more attention to consistent, careful draping; I'm not a prude and have gone to nude beaches, skinny dipped with friends, etc, But when one has a life altering, incurable disease, there is not much you have control over. As a matter of fact, hardly a damned thing... and to lay with your genitals uncovered with or without a penile clamp in place really isn't necessary unless the medical professional is working in that area and there were certainly, at times, reason for them to do so as they did their work. I seemed a good deal more ill at ease about it than the 2 Rad Onc Nurses but of course, they do this regularly and have 20 years experience, which I respect and am quite grateful for. But they seemed a little less concerned with draping than I would have liked. Or if I couldn't be draped for some extended length of time where it really was required, a simple comment of what was taking place would have sufficed. I didn't feel like I got that. Communication.
Please note that these are relatively minor issues, but important to discuss. I spent time writing an email to be distributed to the staff I'd be working with and I'm told and don't doubt that is was shared. But I feel strongly it was not read or, if it was, little attention was paid to it. It's no secret that men tend to stay away from the Doc as it is. Because I had the luxury of having the same PCP for well over a decade, I knew he had and always would make every effort to respect my dignity because he understood that was part of trust between a medical professional and patient. Every effort should be made to respect the privacy and dignity of all patients, first because it's professional and secondly, because there are men (and women) who wont go in for intimate checkups if their basic dignity is not respected. I felt there was a fair amount of time spent standing and talking with each other, and ME, while I layed there undraped. Now YOU may do this every day and it may just be another set of genitals to you, but I DON'T do it everyday and these are MY genitals. Do your best to afford me that dignity in the same way I would hope to afford to you if I were the medical professional and you were the patient. Treat me as if I might have had a sexual assault in my past that makes these procedures difficult for me. Treat me as if I feel vulnerable in this situation. Treat me as if something I've brought up more than once might be of more than average concern to me. Communicate.
I know that aggressive, high GL PCa is challenging at best. I'm glad I've found a team that I think understands and is in synch with MY goals and needs. While I do have this stringent criticism, I did feel that I was in the hands of professionals with over 20 + years experience. My criticism is not of knowledge, but rather "bedside" manner, making every effort to know your patient and practicing simple elements of respect. But most of all.......
communicate.
Next week, on to the 5 SBRT sessions. More to follow.
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