Blog 1: My Brain Tumour & I.
Today is Friday 12 August 2016. At the end of April I started getting a swollen eye. I thought it was going to be conjunctivitis. Pharmacy kept telling me to see a Dr. I did at the end of May. He said it was hayfever. I got some eye drops and bought some antihistamines. It didn't do much. My eye got worse. My right eye stopped focusing in the same plane as my left eye so I had double vision. By July this was so bad that first thing in the morning and last thing at night I could not effectively see. I saw my GP on Saturday 30 July 2016 at 3pm. He referred me to the eye hospital. On Monday 1 August 2016 at 9:30 the eye hospital called me with an appointment for Tuesday 9 August 2016. The NHS is only ever that fast in one circumstance.
It was in that instance that I knew that it was a tumour of some sort. No hospital calls a matter of hours after a weekend referral. So, I was prepared. It did not frighten me nor did I get upset. It was just the next chapter in an already over busy life. I was a bit gutted because I had literally just moved jobs on 4 July 2016, so my only concern was how my new firm might react to a lot of time off work (they were amazing).
I saw an eye consultant on Tuesday 9 August 2016. He was talking about a biopsy before we even had the CT Scan. He didn't mince words. I had a CT scan and a chest x ray (I smoke). I was sat behind him when he looked at the scan. It was massive, I could easily see what the tumour was. It was really obvious and really big - about 4 or 5 times bigger than the eye ball it dwarfed. It goes from my right temple down around the eye (in the socket) and across over the sinus. He told me that it had dissolved a lot of the bone it had come into contact with, so has likely been there for quite a while. He did not think it was a primary tumour, as they do not usually start growing there as a primary [Edit: the three are the only tumours I have, so thankfully one of them is the primary and it has not spread elsewhere).
The consultant confirmed they would take a few biopsies of the material, which would allow us to determine whether it is malignant or benign [It transpired to be malignant but low grade). I arrived at hospital on Thursday 11 August 2016. My best friend Elizabeth was with me. I was taken down to operating theatre at 12 noon. They had expected it to take an hour. It took 2 hours. They made a small incision along the line of my eye crease and pulled down the lower lid. They (I think) then popped the eye out and took multiple samples from three regions of the tumour (brain, eye and sinus). They confirmed that it is solid all the way through, but is starting to fall to pieces in one part.
I had lost all sensation in about a third of my face. Half my upper lip, one side of my nose and up to the bottom of my right eye and going up the cheek bone. It is dead, no sensation. It's weird, I have an itch at the corner of my nose, but obviously can't itch it because there is no sensation there. They had to cauterize around a nerve, and so they expect some or all of the sensation to come back within 14 days, but I should be prepared that it may be permanent. [Edit: it is permanent]
The lab started work on the samples yesterday (11 August 2016). I should hear back later today (Friday) or Monday. I have an appointment with them on Tuesday.
My case is being reviewed by a panel of experts in the various fields. They are a North West panel who look at cases like this. So, I feel very confident with my eye surgeon, he is ace. But, I would be relieved to know neurology and oncology are involved, and that it is being reviewed by multiple people right across the North West.
I have been told that the tumour is so entrenched in the surrounding material and structure that at best they would only ever be able to remove up to 85% of the mass. So, if it is malignant then I am fairly sure I will be dealing with an ultimately terminal diagnosis. I am most concerned by the loss of bone. Can a benign mass really dissolve bones in the way this tumour has? Can I really believe that a benign tumour would grow as fast as this has? Four months ago I had a mild swell. Now I look like I have been three rounds with Mike Tyson. How does a benign tumour grow so much it pushed my eye ball out of my head?
So, yes, I am now prepared and ready to be told that I have a malignant tumour that is not operable. They can get a large section of it out, but there will always be 15% left behind. If malignant that means it will eventually kill me. I was also told that it is highly unlikely that this tumour is a primary tumour. My eye surgeon said tumours situated here usually originate elsewhere. I am relieved that it has not originated in my lungs. My surgeon was an eye surgeon, so could not tell me about the brain mass. I am therefore looking forward to finding out if Neurology has found anything in the mass of my brain (the tumour is growing on the front/side of my brain). I had real bad short term memory problems, which is caused by this tumour, but I wonder if it is originating from something on the inside of the brain rather than growing in and at the front of the brain. Whatever or wherever it is, this one is pretty huge, so I dread to think what a primary tumour will be.
I have a pacemaker (I got my first pacemaker in 1995 at the age of 21). I therefore cannot go in an MRI scanner. I am going to ask on Tuesday how we propose reviewing my body for other tumours. If this one is falling to bits in one part then it would seem logical from this that tumour cells may migrate around the body.
I came home today (12/08/2016) at 11:00. I feel swollen and am finding this whole loss of feeling in a large part of my face to be weird, especially as I keep having an itch in an area that can't feel anything - it is really bizarre.
I am calm and quite positive. I am not frightened. I am prepared to be told that it is malignant and will ultimately be terminal because they cannot remove the whole tumour. I am likely going to need an operation to remove chunks of it and to put in plates where the bone has been lost (there is a fairly large amount of it gone). There is still a chance they will say that it is benign. My surgeon said he was confident that it is benign. I just cannot wrap my head around fast growing and bone eating as being benign. I, however, do not study oncology so this is just me surmising. Always a bad thing to do. If it transpires to be benign then all the better. But I am resigned to it being malignant, fast growing and more likely terminal. I am fortunate that I am not freaking out over this. I have not got all upset or cried. I have been through a lot in my life, so something else coming is just as should be expected. My life was never designed to be easy.
I will update this blog when I know.
12/08/2016 at 12:45.
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