Wednesday, November 2, 2011

Day 11

Okay, today having a shower was very painful.

The water felt like acid on my skin.

Putting the cream on afterwards was painful as well. Time to start taking some Tylenol. Lets put it this way... I had extensive gum surgery a few years ago and didn't take the Tylenol 3s and Percocet I was prescribed. I'd be taking smaller portions of them starting tomorrow.

All this being said, it hasn't been as bad as I suspected - so far. I keep trying to keep that final goal in mind - having skin that has much less pre-cancerous spots and less likely to develop melanoma at some point in the future.

My visit to the Dr. yesterday was interesting. He doesn't want to prescribe me anything to relieve itching because "we're looking for a histamine response". His solution to that and the pain was "Tylenol and cold compresses". He said that I should continue until I get blistering/scabbing and then stop - not necessarily going by the 30 day instructions he initially gave.
He suggested that it was "my call" to do the rest of my face at the same time, and that perhaps it would be best leaving it until after we're finished on my forehead. Who wants to go through 4 months + of this? Given that I'd already started, I figured I may as well persevere.

Meanwhile, I see things are starting on the rest of my face. Particularly near my mouth. Oh joy. That means more of me to see for anyone reading this.
It's interesting (in a way) that the angry spot in the middle of my forehead corresponds to where I had a sunburn blister back in 1976. I remember that. I got burnt so bad I could barely move my face and mouth. History repeating.

A note to any Doctors that happen to be reading this:
  • Don't treat your patients as a number.
  • Give them more than 3 minutes of your time.
  • Listen to them. We're people and don't have all the knowledge you do.
  • Having Interns examine and deal with us is fine, but you walking in for the last minute of our appointment time does nothing to instill confidence. Especially when a good deal of the first two minutes was spend clarifying/correcting details in my file.
  • Don't lose your patience with someone asking what you seem to think is a silly question. This is new for many of us, and we're scared.
  • If a patient asks about pain meds, or something to make the process easier, don't pooh-pooh the idea and suggest cold compresses. Some of us won't ask unless we really need it. Not everyone is a drug addict looking to score a fix.
  • GPs.... please do NOT refer your patients to specialists who are so busy that a patient can never get through to their office by phone, or those that only hold "clinics" once a month at a local hospital. Nor should you refer them to Drs. who are more interested in selling Botox/Restylane and other cosmetic fixes than dealing with problems that could kill you.


  1. If only we could get doctors to read this!

    I'm sorry your experience sucked so hard (I mean, I knew it did from our brief exchange this morning, but not the full extent!) must be so discouraging...

    Please please go to your regular GP and get some help with that.

    For future - when it start healing are you allowed to put anything on it? If so, talk with BSP about a product she uses. It was actually invented to help burn victims' skin heal better so it should be ideal for you afterwards. Also, homeopathically - biotin. I take 4 tablets a day (it helps your hair and nails grow faster) but it's just as good for your skin. And you can really slam your bods with it - my doc says it flushes out of your system daily so you can't overdose (unlke B12).

    Anyway - we're with you hon! xo

  2. Thanks!

    I asked my GP on my last visit in prep for all of this and he has no experience with patients doing this treatment. Given that it'd take a couple of days to get in, I think I'm good with what I've got. He suggested going directly to the dermos office and demanding to be seen. (No comment)

    Once the "healing phase" kicks in, (late November)some put corticosteriod cream on to help with the itching, and something called Aquaphor, which sounds a lot like vaseline to help with the dryness.