Life is a journey and it’s gets harder as health matters are impacting lives- one shut down- be overwhelmed- not there for others and me- so sorry- I received cancer help outside my care parameters. And they far and beyond for me. Information is there but kindness matters more. And I make sure sure to do the things I need to - books, wanderings , etc to help me feel it’s all matters. Sorry I have not commucated with Mayo and the teams but struggles are real finically And emotionally . Take care

Nobody, thank you for sharing this part of your journey with us. I'm also finding that my health care pros seem to discount and brush off my questions and concerns. I think in my case, it is because I am 76 and if a specific concern, b.p. and kidney disease, isn't yet at the most critical stage, they just write it off as age.

A few weeks ago I wrote about my best friend's ongoing severe pain ff her stage 4 breast cancer diagnosis, lumpectomy, chemo and radiation treatments. Her pcp immediately referred her to the surgical oncologist who told her "the pain is something you are just going to have to live with". My post here and further research resulted in printing out many options to pursue before "just living with the pain".

What struck me in your post was that you tend to "just shut down". I compiled a "cliff notes" version of the printouts because my friend doesn't spend time researching or "wading through a bunch of verbiage" placed all in a pocket folder and called a kitchen table discussion/intervention with her and hubby.

Hubby and I got her to agree to ff up with her pcp. She called instead of making an appt. Although the nurse called and left a message for her to return the call, she didn't. This was 2-3 weeks ago. Whether she is in denial or just shuts down, I'm not sure but I was alarmed when when they were over the other day and her underarm pain from lymph nodes removal made her flinch with the slightest movement of her arm. In showing me the area, it was swollen and an 1 1/2 wide horizontal red band across the area made me think it was inflamed and possibly infected. That is when she confessed she hadn't call the pcp office back.

Hubby hadn't known about the swelling or inflammation and she hadn't told him of the doc's return message either. Yesterday he call the pcp's office and are now waiting for an apptm. with a pain mgt. specialist.

Like you, my friend is a great listener but also great deflector and non-sharer when it comes to her own personal issues. I understand the fear that can grip us but also know that avoidance and simple acceptance of a condition does nothing to move us to a better place. I am so happy you are being proactive with your care and letting the former pros know that you will be seeking other professional help.

What Kamama94 wrote is so relatable and true as well as what others here have responded for most of us when getting a serious health diagnosis and are seeking treatment. We are paying for our professional care and if our caregivers cannot treat us with the same concern and tact they would want to be treated, it is time to move on. Wishing you the very best and adding another voice to that of others that you are not alone and that we care. Please keep us informed as you move forward.

@nobody I am glad you posted here, and I sincerely hope that allowing yourself to vent, has made you feel a bit less burdened. Is there a social worker connected with the cancer center you go to, or are you able to take advantage of a patient support group or other talk therapy, in your area? Reading your post, it had been a very difficult road, and continues to be so, for you. For that, my heart goes out to you.

Yes, it is difficult to always be the one who listens, and doesn't have someone to talk over your own concerns. Take care of yourself, and release with love, those whose "problems" just cannot be solved by you. Look for your own support system, like your friend who went with you to that appointment.

What other care have you sought out, now? How are you feeling, after venting [your words!] here? How can we help you, here at Mayo Connect? We do care.
Ginger