I started out writing a diary of my journey, but after a week I really didn’t have much to tell, and decided that what I did have to tell would be better said in a post for you, when I first month was over.
Far be it from me not too keep you up to date with all things me.
This is going to be one of those text heavy post with only one picture. (There are only so many pictures of hospital signs and ward signs that one person can take and look at).
The last time I spoke Gorlins Syndrome I told you that I had my surgery cancelled, this was due to my Consultant wanting to see me in person because of the large increase in BCC’s that I had. Well…..
On Monday, I got to see him. Despite having a 1025 appointment that had been changed without advising me to 1100, then having to wait until 1200 to see him, I finally got in.
He apologised for having cancelled my surgery and told me, the reason was that I had gone from a half hour surgery slot to a three hour slot, also because I had such an increase in BCC’s. A new date had been found for me and it was late November, he asked if I could give his secretary a call to confirm what date it actually was.
He asked me to show him where the BCC’s were and that I did. I explained to him that I have several on my head but finding them is a nightmare, so asked if we could just go with the flow and take them off on the day as I would have no hair and he looked quite shocked. (I have been threatening the hair thing now for so long I am boring myself) When I explained to him that keeping my hair seemed pointless when I am starting the Erivedge after the surgery, he seemed to back down and said “Oh ok, well yes you are highly likely to get alapecia in some form so I understand the reasoning”.
At this point came the question I was expecting.
“So why, if you are planning on taking the Erivedge, are we doing surgery?”
My answer was simple, I could not get my head around starting the oral treatment with visual BCC’s. I wanted to be clear and want to start the Erivedge on a clean slate.
I explained that I had consulted the team at The Freeman Hospital and that they were happy with this decision, also I told him that I understood where he was coming from but there was in my mind no other way about taking the treatment. I have spent days thinking about nothing else, hours when the kids have gone to bed crying because I just couldn’t get my head around what to do. This way I am comfortable and in the zone and that is what counts.
I am going to have to have a sizeable graft on my head and maybe a couple more too. He has asked if I would consider leaving two on my lip for the Erivedge to work on, they will need a graft that will inevitably give me an upturn in my lip which he isn’t happy about so I said I will think about it and give him my decision on the day.
At this point I was so stressed, and so flustered, choked to the point I was holding back the tears that he gave in and said ok, lets go with that.
We had a bit chit chat and off I went home to call his Secretary.
When I called she was on the phone so I held on for her. As I sat my mobile started ringing and it was her calling me.
Turns out I had left him and he had got back in touch with her and asked her if I could be put in any earlier.
Could I go in next week? The appointment was mine and could I let her know before the end of the day.
A few phone calls and I called her back and confirmed.
I followed this phone call up with a call to The Freeman and explained the whole thing to them. Thankfully they were very helpful and understanding and I now start the Erivedge two weeks after my surgery.
Here’s hoping that this is now the plan and it stays that way.
Preparations for next week have begun. The plan was to do my hair on Monday night or Tuesday morning but we sadly lost my Great Aunt over the weekend and her funeral is to be held on Tuesday. As a result it will be a Tuesday night chop for me. I will of course share a picture with you when it is all done.
As always thank you for reading…until the next time 🙂