Chemo is finished: Now what?

Good point.

We'll see what happens next Monday. I basically fired him already. Which may be a dumb thing to do because I'm scheduled to have maintenance starting later in January. Not sure I can get into another doctor before then.

Stuff like that is super-annoying, but I wouldn't drop a doctor I liked over it. You can just as easily get a doctor who's like that too. And there may still be the same administrative problems.

I always used to get my healthcare from a hospital system that tended to have lots of problems like that, but often has really nice doctors. At the ultrasound where my endometrial cancer was recognized, they did something like this, and also couldn't schedule me with a gyn-oncologist right away because the scheduler was out of town. So I went to the other hospital system in town, which is more organized. But my oncologist there is either overworked or is putting in the bare minimum effort to provide me with paint-by-numbers care. And he's a @+#&. (The NPs are nice though).

One of my New Year's resolutions is to get a new, nicer oncologist back at the disorganized hospital.

I so discussed with my oncologist's team.

Today I showed up for a cardioeckogram. The order wasn't sent to the hospital. They sent an order for a CT that I completed last week. We couldn't reach the oncologist office. The hospital couldn't even reach it.

The order would up by fax 40 minutes after my schedule appointment time. Now I have to wait to be squeezed in. I do have an appointment for 200 pm so I showed up at 11 for a 11:30 appointment and I now will have to wait until 2 unless I can be squeezed in.

I wrote the oncologist I told him stuff not working and I don't know if I can continue to work with his staff. I have an appointment with him on Jan 6. All these appointments I've been doing for the past 2 weeks is for that Jan 6 appointment.

We will see.

It sucks I like my doctor. He doesn't employee his staff. The hospital system does. He has little authority over them.

Denise

Me too. I've had to continually check up on my cancer "team" to make sure my medical imaging scans have been ordered, my blood requisitions have been sent in, and trying mightily to have test results explained to me. It's been over a year since my radical hysterectomy and despite my complaining about pelvic all the surgeon could say was, "I don''t know [what's causing it]." Since August of this year I have been bleeding and finally, after continual pestering, I got an MRI, which showed a recurrence of my cancer (not that it ever went away) in a different location in my uterus. The oncologist had a meeting with "my team" (which I never really am a member) and booked an appointment for me with a radiologist, without telling me the date. The radiation would be used to arrest the bleeding and provide some comfort, but not to eliminate the cancer:( After no response from the onc. as to when the procedure would happen, I had to go down tot he cancer agency to request information, which the receptionist couldn't provide. After getting home, I got a phone call saying that I had a "consult" appointment with the radiologist three weeks from now. Not the procedure, but a "consult".
So far, the promised appointment with the gynecologic oncologist remains a mystery.
So, do I have faith in the medical system? Not really. I too have taken things into my own hands and am receiving care from a naturopath. My pain has subsided as has the bleeding.

Yes we have responsibility for our own health. Now I know that what I was doing before the he Crohn's diagnosis and then cancer diagnosis have to change.

@denisestlouie I like your metaphor of you being the general contractor for your health. It is an integrate approach with you at the head of the system. It takes resources and money to set up what you did and it's unfortunate that many people are unable to do that. Like you I have set up my own integrated system that is based on recommendations made by my Integrated Medicine physician. I have a personal trainer weightlifting, massage therapist, and see a physician in integrative medicine who is in the oncology department at Mayo. I've also had acupuncture. I use MyFitnessPal to track my nutrients which helps me with my diet. I practice mindfulness which has helped to reduce anxiety. I take my medications as prescribed. So, like you I figure it's about 98% up to me to do the things necessary to take care of my body.

Thank you

Here is to you and I having a healthy 2025.

Denise

Thank you Scott.

I am reading a lot about what I can do to stay healthy and maybe increase my ability to stay disease free. I'm reading a book on integrated oncology. A google search did come up with several groups in my area. But I like my current oncologist. I trust him. I also work with and environmental and holistic Doctor. He is also an MD. I also have a therapist and a personal trainer who are both trained in working with people with chronic illnesses. So I have created an integrated program for myself. It's disjointed in that none of these providers know each other. I see my situation like a home remodel and I'm the general contractor. I would have preferred to out source that job, but I can't with the current situation. But you know, I believe now that I'm finished with therapy it's 98% up to me to fuel my body properly. It's up to me to move my body everyday. It's up to me to pay attention to my body's signals. It's up to me to show up for medical appointments. It's up to me to advocate for myself with providers.

What is so sad is that it takes money to do this. I'm currently in a position to do this for myself without going bankrupt. Many people don't have the resources that I have. They don't get to do what I'm able to do for myself. I believe there is enough information about integrated oncology that it should be part of every practice and insurance should cover it.

@denisestlouie
The system is bad and I understand your frustration. Still, your self-caution to avoid the snake oil salesmen is warranted. I am reminded of my father's counsel. Nothing is so valuable to you as a healthy disrespect for everybody else's opinion. That goes for most of the posts here including mine.

Find the doctor your trust and forget about the system. Oops, another opinion! You know what to do. Ignore it also.
Best always
s!
Scott Jensen

It is scary and painful, but I am on the road to recovery. I have started the treatment recommended by my naturopathic doctor.
I have faith that 2025 will be the year my health will be fully restored. Take care, Denise.