All, Some, then, None.
When I was diagnosed, it seemed like every day I was meeting a new doctor, multiple doctors on some days. Some days I had doctors and procedures, or some kind of x-ray/mammo/MRI thing going on.
But today, I can't seem to get one doctor on the phone. I can't seem to get anyone to listen to me about my pain, or other side effects. And although I am working out to work those things out, sometimes, I do worry that some mysterious pain could be something serious and may be overlooked.
I guess this is a question of aftercare. No one really tells you what happens once active treatment is over. You have to remember when to get your mammos and you have to schedule them and call it in. No one is going to do the reminding. How do I know that what I am feeling is not just some silly pain from gas!? Or that shoulder pain is some old dance injury? Or that chest pain is just heartburn?
I am so grateful that I don't have to see doctors in bunches anymore, but there is something also alarming to me about not seeing any for long stretches of time. I guess it consumed so much of my time that is now freed up. My tail bone still hurts. So much so, at times it hurts to sit, and it hurts to stand. But they didn't see anything on the scan…so I guess it's just another mysterious pain? If they say it's nothing, then it's nothing, right? Right.
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Peggie, you're suffering from a common condition - I call it "who's taking care of me now?" syndrome. It's very tough to transition from lots of doctors constantly to NO doctors at all; makes you feel kind of bereft, doesn't it? It can also be scary, as you say. I had good luck contacting my cancer center to find out what they advised about after-care; turned out they have a "survivors' clinic" every Friday, where you go when you don't know who to ask about that strange pain, or whether you should be concerned about this ache, or that bump. Many cancer centers and hospitals are addressing this issue with new survivorship programs - because the more people surviving, the more need there is to guide us through the rest of our lives. Turns out cancer is a lifelong, chronic health challenge, both physical, and emotional; I'm glad the medical community is starting to realize this, and to do something about it. So, check with your hospital; and if they don't have a program like that, check with other area facilities. They're usually called survivorship programs, as mentioned; or lasting care or after care programs. Good luck - PJH
yes, I have been to a few support meetings. Thank you. I guess I was wondering, who really is in charge now? And I guess it is just me. Thank you for reposting your great post on this. I read it and forwarded it.
Hugs, Peg.
That's exactly right, Peg - YOU are in charge. It can be scary, to think you're the one directing your treatment; but trust me, you gradually sort things out and grow into the role of "empowered patient." Take care - PJH
Yes, Peg, being in charge can be scary, but you can do this. Here is another post on follow-up care you might find helpful. Take good care of yourself while moving on to your new post-cancer life.