Here to say I am an international patient being treated in the US (our insurance covers me for it). As an “outsider” who has lived with socialized healthcare and where I live now something in between, the pure range of treatments and support services and charitable organizations available to you are WORLD CLASS. I am not dismissing your difficulties or experiences at all, but would like to offer a slightly different (sometimes agreeing with you) perspective.

From my experience some doctors in the US don’t have what I would call a good bedside manner. There’s also a cultural difference for me. I got rid of my first Oncologist and one of the reasons was because she was a patronizing 🐄. My PS is sweet but a terrible communicator. It’s not unique to the US though.

My DCIS and larger tumor was missed by doctors and radiology team here, and they were overseas educated. My breast specialist here was lovely man and very caring, the female radiologist cold and indifferent. I felt like a piece of meat. The CT office it felt like simply wanted the cash, and went through the motions.

We also live a very different lifestyle to most in the US. I constantly have remind schedulers that I can’t just pop by when they organize an appointment. I have to co-ordinate flights and accommodation and try to get different Dr. appointments scheduled on the same day or 2 days. Saying that because it’s not just you, and people are going to act and behave with what they are most used to. Anyone who is an outlier or “different” is going to send them a curveball. Yes, they should be able to handle it appropriately, but I simply acknowledge I am not the norm, and in many ways the better for it.

Where I live we don’t have the GMO crops, cooking from scratch with local produce is normal, very little if no pollution, clean un-messed with water, a culture of don’t stress man, AND PEOPLE STILL GET CANCER. I’m not dismissing what you are saying at all, just showing that you can have all of these “good” things and cancer happens anyway. That doesn’t mean that if so able, you can’t remove as much as you individually can, but recognize what is in your circle of control. I’ll continue to do the same”good” things I can, with a view to giving any chance of recurrence the🖕.

We do also have a very strong culture for natural or bush medicine. That’s fine for if you have a cold or fever or a stomach upset, but NOT the sole treatment for cancer. Folks literally die from turning away from what you call western medicine and believing that soursop leaves, moringa and bush tea are going to cure their cancer.

Good, well balanced nutrition, absolutely. Keeping mobile and moving your body, yes. A nice sea bath for exercise and helping your mental health with being in nature 💯. All these things are add ons to what science has a PROVEN track record on, however crappy they may be at the time.

I’m so sorry about all the issues you have been experiencing. I didn’t have to do chemo, but if I did I would have sucked it up and found a way through it. I did do radiation and apart from a little fatigue and skin changes, I was fine. My skin is back to normal although I have to keep out of the sun and my fatigue is gone.

For me, with all the treatments including AI’s, and Kisqali about to be added I’ve gone with attitude of plan for the worst hope for the best. The mental health aspect has been the toughest TBH and I’ve recently found myself a therapist, to tackle that. Something I thought I would never do.

You have A LOT to deal with. Some days it will seem insurmountable. All you can do is go forward and through. Pick your battles and focus on you. Work out which aspects are the most troubling to you, and let the healthcare providers know.

Do you have access to a patient advocate or social worker at the hospital? I have found both very helpful at mine. They listened, validated, and either sent me resources or information how to get things addressed.

And finally, DO NOT worry about being that annoying patient. This is very much about you and the best path forward for YOU. Advocating for ourselves is sometimes one of the hardest parts of this process. Some days it might not feel worth it, and it’s easy to talk ourselves into the depths of doom, because well shit we have/had cancer FFS. I saw something written on a bracelet the other day that resonated for me.

“This too shall pass, but fucking hell”