Photo: May the Angels and Devas continue to protect us.Just because I always had a smile on my face in my hospital slide show doesn't mean I'm permanently a happy person. Sorry to disillusion you - I know you thought at least there is one happy person out there. Well, there most probably is - but it's not me.
Do I sound depressed? Well, maybe a bit. Remember, this is the pain posting!
So, the first 2-3 days after surgery I was doing great, sailing actually. I got home, did the laundry with 48 hours of my operation, cooked, generally life as usual. Except I forgot about a little bit of drug therapy that I was so blissfully aware and unaware about. The Magic Ball! This was the local analgesic that was being infused in the incision area for 2-3 days post-surgery. And blissful it was!
Until. Yep, it finally finished it's infusing. The Magic Ball changed to a deflated ball and the truth of having the body cut into became apparent. I seemed to manage on ibuprofen, tylanol and tiny amounts of narcotics (Vicodin and Percocet).
But the pain then seemed to increase for the next few days. It felt like sandpaper on a raw wound with electric shocks stabbing through the area (sounds like a torture treatment!). One thing I wasn't prepared for was the extent of the area traumatised. I thought it would be just the incision area but it is the whole left chest space that is healing - sternum to armpit; collarbone down to lower ribs. The nerves have been cut and are very confused right now! Even soft clothing next to the skin was hurtie - I even attempted to redesign a camisole with scissors(!).
So I got on the 'ole Internet to research these weird pain sensations. I quickly found a condition called "Post Breast Therapy Pain Syndrome" (PBTPS). Yuck! It seems to describe the sensations I'm having. So, no, I wasn't smiling after reading this. Especially knowing that some women have this neuropathic pain for months or years after surgery. This is a link to info on it: http://www.cancerlynx.com/painpbtps.html
So, today, I called a nurse who I thought had enrolled me in a clinical study through UCSF to measure the side effects of breast surgery, which included pain management. I knew they used a lidocaine patch (local analgesic) to help control pain. Unfortunately, when I spoke to her she informed me that she had gone away for 2 weeks over the holiday period and there had been no way to contact her. And that I was no longer eligible for the study. She said she had needed to see me a 2nd time before the operation but for some reason, she had never contacted me again (she said she had seen my name on the surgery list but didn't contact me before leaving on her vacation - strange and sad).
Anyway - I was rather hurt and disappointed to not be part of this clinical trail. I felt that this was a way that I would be able to give back some and help to further the understanding of breast cancer in anyway possible. This disease is just wretched. So many women and families are devastated by it.
I then called the good doctor, himself. I needed my pain meds! I tried to schedule an appointment but next Wednesday was the earliest. So I mentioned "pain" to the scheduler and it was like a magic word. I got through to the doc's assistant and she said the doc would call me back in a few.
And he did. I proceeded to tell him my tales of woe, torture and clothing redesign. And requested lidocaine pain patches. He was more than happy to prescribe them. But he also reassured me that this was still early healing days and to maybe rest more and that taking it easy was in order(what? Huh? Rest?! Me??!). He said a great phrase - this might just need the "Tincture of Time". Very cool saying!
So hopefully this episode with bodily pain is just a part of the normal healing journey and very temporary. May it truly be so.
I know pain is an integral part of our human existence. And one should learn to accept that as so(but with plenty of pain meds ;)
