So, as I set out in Blog 1, I was recently told that I have a tumour growing off the front of my brain down the back of my eye and nose. It is a huge tumour, so much so that we are now applying for its own postcode. I may even apply to the electoral commission to get it designated as its own constituency so I can run as the Candidate for Tina Tumour Land.
So, this blog is just to remind me later what happened on Tuesday 9 August 2016. What happened the moment I found out my life had changed. It is a strange thing to go through.
So, I was at the eye hospital. My eye had been swollen for 3 or 4 months. I'd originally been told by my GP that it was heyfever. This is a picture from me attending an event on 26 July 2016. It had swollen to the point that I had double vision for most of the day - it had no double vision when it started, then gradually got worse.
I had an appointment with my GP on Saturday 30 July 2016 at 3pm. I received a call from the hospital with my appointment on Monday 1 August 2016 at 9:30 am. To put that into perspective, I had just waited a 13 month period for an appointment with the pain clinic (I broke my back years ago, so occasionally see them). At that immediate moment I knew. I knew the Dr assumed it was a tumour. For some reason it did not freak me out. Best wait and see what they say, is what I thought.
So, I got in to my first appointment with the consultant. He said he was sending me for various tests. But, he started talking about doing a biopsy "if its big enough" or I would be put on immune-suppressant drugs to reduce the swelling if it was not. Again, no "you have a tumour" but equally clear what he was thinking. We had not done a CT scan at that point. He knew it was a brain tumour. I knew it was a brain tumour. Neither of us said the word. Again, I preferred to wait.
I had the CT Scan (can't have an MRI, as I have a pacemaker). When I eventually got back in with him he looked at it. He was very quiet. I was sat behind him. I could see the bloody thing - it was huge. There was no mistaking the fact that there was this big brown ugly lump around, above and below the one eye, which seemed like this insignificant thing in the middle of this great big huge lump.
I just asked "Is it big?" No, "Is there a tumour?" as we were far past that by now. The only question was "Is it big". He said it was. We then went on with a discussion of how we were to proceed. No big reveal. No dramatic music with a pause as he gently tells me. Just a move from it might be to it is with no mincing of words that may get lost in translation.
So, what were my thoughts. To be honest I had two. The first was, "Oh shit, this is real. This is actually happening, right now, right here" and the other was "I have a holiday booked for 2 September. I asked if I had to cancel my holiday (of 14 days). He said I did have to cancel it. He left the room for a few minutes and I just kept repeating out loud "Oh shit, oh shit, oh shit".
I had spent the last few months telling everyone it was heyfever. My friend’s partner is a nurse. She said yesterday "how could it have been heyfever in one eye and not the other". Very true. I had not thought of that.
I was told it had been there a while, as it had dissolved all of the bone it was in contact with. So, why had my optician not seen it when they were looking inside my eye?
The consultant spent most of his time silently scrolling back and forth through the tumour on the CT Scan. I had another Dr say "Jeez that's big". Everything tells me this is serious. I know what a tumour is. I know it's a big tumour that has already undertaken significant damage to my bony structure in the front of my head. I also know now that it is a solid lump all the way through but has started to fall to pieces (which I assume means it is likely to let cells go wondering off around my body). He also told me that it is highly unlikely to be a primary tumour, as they do not tend to start growing in this region - they usually start elsewhere. So, lurking in some dark corner of my body is likely to be another huge lump that is also trying to kill me off.
So the problem I have is: why am I not getting upset or angry or frightened? As a kid I had anorexia, which I had for 20 years. I had a heart defect, which I had for about 10 years. I broke my back. Is it just that I have had my fill of Drs telling me bad things? Is it because of my training as a lawyer? I am used to hearing bad news and getting on with it and altering plans to meet the new reality? Am I maybe just not taking this all in? I really do not know.
I believe I have taken it in, because I have come to the conclusion that with the speed it grew over the last four months and the damage it has done already likely means that it is malignant (consultant says he thinks it is benign [update: it is malignant, but not very, so unlikely to kill me off]). He's already told me they would never be able to get more than 85% of it out, so if it is malignant it might be terminal. I have already made decisions about how and when I would stop treatment. So I think it has sunk in, I just do not seem to be having a very negative reaction to it. Maybe it is because I have known for a while what it is, so the final viewing of it was not a shock. No big reveal, no dramatic "I am sorry to have to tell you ..." just a move from theoretical "this is what we might be faced with" to "this is how we proceed" with no statement made in between to confirm that it is what I knew it was looking at the CT Scan.
I think I am more worried about how other people cope and, just as important, how I would cope if I lost my job because of this. I have all of that planned out. I have considered all aspects of what could happen over the next few months. My will was written a number of years ago, so no worries there. I am atheist, so no need for a boring ceremony - just a quick flash of the crematorium's fire and then off for a few sandwiches and alcohol at a wake.
Right now, today, I do not know what the results of the biopsy are. I should know Monday or Tuesday and I have an appointment on Tuesday. Maybe it will hit me then? Maybe it will be all ok and I will find that it was just a mistake and I just have a bad cold and did not realise it?
I left the hospital and made two calls immediately after finding out. One to my travel agent to cancel my holiday. The first time I said "I have a brain tumour" I cried. I then called my best friend and cried again. I do not intend crying again after that. It does not help, it actually does the opposite. Please don't expect me to cry or be sad, as right now I would rather be dealing with this properly and trying to get the best result from yet another shit hand in this game of life I seem to be winning in but keep getting a bum hand that knocks previous wins off the table.
Sunday 14 August 2016.
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