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vesicant extravasation survivors I am waaaay too alone on this one!

Montanamanak54
Posts: 1
Joined: Oct 2009

On May 20, 2009 an unfamiliar nurse appeared to administer my third roud of RCHOP; the previous two had saved my life from a rapidly growing Non Hodgkins B cell diffuse Lymphoma stage four (according to Dr. Swarts).
The Benydryl and Attavan combined with fatigue from a road trip took me off guard so I trusted the stranger who mishandled the procedure and didn't even know to stop when I began to comment that something seemed wrong. She forced the worst chemo in anyway and tried to push the saline until it came out of my skin. I had a power port in my upper lef chest. Now I have a big hole in my chest that has to have bandage changes everyday. They have been giving me fentynal patchs and morphine which ruins my day and my bowels
I have had to seek treatment for PTSD and am falling apart.
I can't face leaving home for a month for the radiation treatment while I am literally still wounded. No one around here seems to know anything about this type of disaster so it is as if no one ever has this happen so no one can talk about it with experience to guide them. "Eveyone" is terribly sorry and so happy I am so pleasant and taking it so well. "It" includes teilling my family I am so near death twice (weeks apart)that they need to talk about the DNR.
Well, about 150 days have passed as my flesh has been eaten away by the chemicals, then three surgeries to cut out dead infected flesh. there is no point in writing more if anyone is even still reading this at this poit.you either understand or you don't.
Thank you if you read this far.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

You are not alone, as there are plenty of us here willing to listen to your story.

I, for one, am happy to read that you are seeking therapy for PTSD. It is clear that you have experienced a number of traumatic events only the first of which was the mis-administered chemotherapy. Therapy can only do good things for you.

In the meantime, if you have not yet done so, please consider the services of an ET nurse (otherwise known as a WOCN: Wound/Ostomy/Continence NUrse). I make that suggestion with the proviso that my wife happens to be one.

ET nurses are specialists in the field of wound treatment, and are so well regarded for their expertise that a part of their jobs often is to teach other nurses as well as doctors about how to best treat any variety of wounds.

Perhaps such a nurse can help you to avoid further surgery while expediting the healing of your chest wound.

Otherwise, I am hopeful that, having suffered through these egregious events, you recognize that it would be a shame at this point NOT to go through with the subsequent radiation treatment advised by your doctors. YOu have been through too much to quit now.

I wish you the best as you move toward the day when these misfortunes are dim memories in your healthy and happy life.

Take care,

Joe

awkward09
Posts: 1
Joined: Oct 2009

i have found no others and my brain does not work for me anymore to do the simplest research. i dropped out of school and my treatment team only wants to radiate me, not fix the wound.
good luck finding anyone else.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Try the Emotional Support board, awkward, where there are truly quite a large number of folks interested in discussing trials and travails related to cancer and even otherwise.

It is important, of course, that you offer something that they can respond to.

I hope that helps.

Take care,

Joe

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