Pain, Pain and More Pain (so says Hollye)

February 16/11

Naturally, the reporter in me has to do research into everything. Though hoping for a good result, I have the distinct feeling this could be cancer. So, reporter hat on, started Googling and reading everything I could find. Stumbled upon a blog by an American nurse named Hollye. She is still in hospital following a double mastectomy. Her blog is published on the Huffington Post site. Since one of my biggest fears is pain, I was horribly shocked to read about her own pain situation. If you dare, you can read her comments for yourself at: http://www.brooksidebuzz.com/2010/11/pain-pain-and-more-pain/
I decided to write an email to Hollye and find out more info about the drugs she WANTED and DIDN'T get and what advice she might have for me. Don't expect to hear back from her, but you never know.

At the moment, I just feel like doing nothing at all, or better still, just hiding under the covers for 24 hours in a drugged out state to shut everything out of my brain.

On the flip side of Hollye's horrendous story, there are tons of other women who have had scares which turned out to be nothing. Am hoping for that, but the one thing I continue to be confused about is the pain. Why is it there? And the pain is not just in the breast, but also in the gland area under the right arm. Never a damn dull moment, as usual.

I was later surprised, when Hollye DID respond to my questions. I believe she was writing from her hospital laptop. An amazing woman. This is some of the helpful information she told me about her own situation.
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I had spinal meningitis a couple of years ago (crazy, I know). For the (three!) spinal taps that I had, I received Dilaudid (which is 5 time's stronger than Morphine).

Morphine is the standard practice of care in the US; however, because I had had Dilaudid and knew that it worked for me, I requested it specifically for my post-surgical pain management. Well, not only did they NOT give me the requested dilaudid, but they forgot (literally forgot) to turn on ANY pain medicine.

Let me explain. After double mastectomy surgery, everyone gets a basil rate of pain medicine, which is a consistent amount of pain medication delivered through an IV. Patients also get a PCA (patient controlled analgesia) for what is called "break through pain" (pain that overrides the basil rate). Break through pain can happen when patients start moving after surgery, for example. Does this make sense?

As I mentioned, the standard practice of care in the US is morphine for both the basil rate as well as the break through pain. I knew that was not enough for me and, being a nurse, advocated for a different medication (Dilaudid).

After surgery, I was sent home and instructed to take Percocet by mouth. This drug is a combination of acetaminophen and oxycodone. This also did not work for me. So, after my palliative care consult, I adjusted my home medication to Dilaudid by mouth.

Many people will say that Dilaudid is "addictive". It can be; however, I had absolutely no problem stopping the medication. There were no issues because I was not in any way tolerant or addicted to the medicine.

I'm not suggesting that you go for Dilaudid, by the way....rather, my suggestion to you would be to have a very long talk with your team to figure out what, based on your history and current plan of care is best for you.

I would also encourage you to include Palliative Care as part of the team. There is a great misconception about Palliative Care, i.e., that it is for end-of-life care. Well, that is one aspect, but the primary role is to specialize in pain and symptom management. Having the Palliative Care team as part of your health care is the best way, in my opinion, to ensure that pain and any coinciding symptoms (e.g., constipation) is managed.

My Oncologist works very closely with my Palliative Care doctor.

I hope that this is helpful to you, Elaine. Please let me express, again, my condolences that you have to endure the F-Bomb that is breast cancer.