The investigation goes…. well nowhere

After the inspiring update from last week, let’s get back to the history and try and get up to date before my next appointment.

After having the first two surgeries, my face was given a year off, to settle. This was when things started to go less than brilliantly service wise with Chelsea and Westminster hospital. I was referred to the dermatology department for them to carry out some studies into the disease. This was excellent news; one of the best things about being a special case is that you normally get the attention of the doctors as they like to play with weird stuff, that’s me. Apparently not so in 2006/2007 at Chelsea and Westminster.

I saw a professor of dermatology who specialised in connective tissue disorders; he was going to conduct research in to everything about me. This sort of happened, but I was never given the interim findings and there were no further studies beyond those findings. I had a medical history done and a skin biopsy, then nothing.  My case and I were shown at the Royal Society of Medicine which was a strange event, I sat topless in a cubical as about two to three hundred doctors walked past me staring, some even did me the courtesy of pointing or poking me, this was a pretty horrible experience, but not the worst of this time.

During my skin biopsy I was asked if the students could look at my case photos. To start with I have students in lots of my appointments, Chelsea and Westminster is Imperial College’s teaching hospital and I’m all for helping the kids learns. I’m also vain so think they were going to see a set of portrait shots I have posed for in the photography studio at the hospital which would give them a good look of my cool hairstyles over past two years. Now if you have a choice between looking at photos of yourself or someone cut into your hand down to the bone, on most occasions you who be watching the slideshow, after about 6 photos I saw a bloody mess. Ahhh they were showing photos of me with face cut off, if you have seen face-off, it is accurate. Now I had never had a problem with gore but my own gore that is disturbing and since that day I have been unbelievably squeamish, I hide my eyes during Holby City. My skin biopsy results were pretty normal to the disappointment of the doctors and this is when the department’s interest in me tailed off, the interim findings suggest I had six more investigation to find out more about the condition, I had none of these, in fact I had no further appointments with the dermatology department until December 2011, when I took the initiative to approach the department again and tell them to sort their act out. Now I can’t fault the new team looking after me, they seem to be good geeky doctors who find me extremely interesting. So project me continues.


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