After I was diagnosed with breast cancer I contacted two major support groups for my skin condition trying to find out whether there are any members who have gone through cancer treatment and wouldn't mind sharing their experience. I wasn't successful and that made me share my own journey for the benefit of others.
I'm in my late thirties being born with severe form of CIE. English is not my first language as I come from Slovakia but I have lived in England for more than ten years.
It all went well with no complications and I was discharged the day after - fortunately without the drain. I suspected that will be the case as my body looses so much water through the skin and although I try to make up for the losses by drinking a lot it still affects the rest of my bodily functions. Only the morning after the surgery I needed help to take care of my skin - there was no way of managing with one hand bandaged because of the cannula and the movement of second one restricted because of the pain and the drain coming out. As from second day after the surgery I was again fully independent. My skin overall worsened on the third day after but settled back to its normal within forty-eight hours. Skin in the area of wound still suffers a bit and I guess it will take a while to recover. Yet I must say that the healing of the wound and overall recovery is going really well.
Making most of it
My first "big" outing a week after
I'm very grateful for all the care in the hospital and support I was given by my closest friends and family. Might sound cheesy but I'm aware that not everyone is so lucky.
Today I saw my doctor and unfortunately I was given a bad news. As one of the lymph nodes that was taken out was effected by cancer I will have to have a second surgery. All my armpit lymph nodes will be removed. I wonder how this will effect me in long term as my lymph nodes work hard to keep me away from infections so common with most severe types of ichthyosis. So far I've been lucky and didn't suffer from them at all. Well - time will tell. The surgery is scheduled for 25th of this month. I must admit I emotionally struggled with thisbit of news. It took me by surprise, caught me unprepared as previous lymph nodes biopsy was negative.
I was reading a tiny little book on health and illness from the spiritual perspective this week. I found it very helpful but unfortunately I don't think there is an English translation of it (I read it in Slovak). It's from German author called Anselm Grun and the original title is "In Deiner Hand Bin Ich Geborgen". Can nothing but recommend.