On Wednesday 24 August 2016 I saw the eye consultant. He confirmed that the tumour is malignant but low grade. He thought that radiation treatment would kill off the whole tumour. I was referred to oncology.
On Friday 26 August 2016 I saw a new consultant. She deals with chemo treatment. She did not think it appropriate that I was referred to her - she thought I should be referred to the Christie. They are doing a trial for these tumours and they are the hospital that has radiation treatment, which the MRI does not. However, she disagreed with the view that the tumour is low grade and also disagreed that it could be treated with just radiation. She thought it was too large and in too many areas (brain, eye and sinus) to be low grade. She thought because of its size and complexity it should be treated with chemo-therapy followed by radiation.
I was therefore referred across to the Christie (which I thought I had been anyway). She has put me down for a PET Scan at both the MRI and the Christie. We will then cancel one when we get the first appointment through - that way I have the best chance of getting it sooner. The PET Scan will look for tumours throughout my body. She will also do a CAT Scan on the whole of the brain and head. It turns out that the first CAT Scan only looked at the front of my head, not the whole head. That has annoyed me because I very specifically asked the eye consultant if neurology had looked at the mass of my brain to see if it appears anywhere else in my brain. He said they had looked - this new consultant said they could not have done, as the CAT scan only looked at the front.
She also confirmed that the biopsy material has now been sent across to Leeds so that Leeds can give a second opinion on what the tumour is. She confirmed that their determination will be the final say on what the tumour is.
So, I will see Christies next week. We will have a final determination as to what the tumour is. My steroids have been increased because I am going back to the right eye being pushed out of my head again and I am getting double vision again.
The loss of feeling in my face is still there, so I suspect it is now permanent. Its has reduced marginally. Feels weird not having feeling from the lip to lower eye lid and nose to cheek. I have a little feeling on the side of my nose and side of my eye. The biopsy cut next to my eye can hardly be seen, which is really great. Literally, you cannot see it unless looking for it.
I am still being positive. There is literally nothing to be gained by having a breakdown over this. I've had a couple of days of being slightly quieter - like on Wednesday. Being told it is malignant was not pleasant. But, based upon what we know now it appears I have an 86 to 91% chance of survival past five years. That is really positive. Not sure I will be too happy if I do have to have chemo, but if I do I am sure I will cope. Losing my job because I am too ill to work is what is worrying me the most at the moment. And not seeing my best friend's daughter grow up also worries me. I am fine with everything, just so long as I have a bit of time. I'm not worried about the cancer though, that I can deal with.