“O.K. it’s very small, that’s a good sign.” It was 8mms round by 1.2mms deep. Tiny. About the size of the end of a pencil. Put the end of a pencil up to your eye and it suddenly looks quite big. But this was a small tumour I was reassured. The difference between it just being an excitable freckle and a melanoma were a combination of a few things. It had orange pigment, this was a bad sign. It leaked fluid which was detaching my retina, hence the flickering and by now spinning lights in my eye. And it was growing. Luckily for me they knew this as I had photos taken previously on the back of my eye due to the Retinitis Pigmentosa in the family. It was also raised and not flat, another bad sign. I was told that as it was so small, some consultants wouldn’t treat it just yet but would wait and see. Wait and see?! Wait and see what? How quickly it can grow and spread? Thankfully this consultant was on the same wave length as me. Burn the bugger!
She told me I was quite young to get eye cancer. She asked how old my children were. I didn’t want to think of them now. My three beautiful girls. My youngest was nine and wanted to discuss best pizza toppings (roast chicken), favourite ice-cream flavours (it’s a toss-up between vanilla, mint choc-chip and Oreo), and whether or not Harry Potter can still speak parcel tongue after killing Voldemort (the jury’s still out on that one). I just managed to tell her my youngest was nine. I was trying desperately to put them out of my mind.
I went and sat back at her desk with my husband. We were stunned into silence. I had no practical questions I could ask her because all I wanted to ask was whether I would live. How many people with a small tumour go on to develop metastatic disease? I was too scared to even ask that as I didn’t want the wrong answer. So the plan was that I was to come into hospital the following week for plaque radiotherapy. This is where they sew a disc to your eye to deliver radioactivity to the tumour. The disc would be attached for a number of days depending on the size of the tumour and the strength needed. Luckily she wasn’t explaining the operation in full as eye surgery sounds disgusting and even worse when it is on your own eye. It actually took me about two months to fully read about what had been done to my eye. For all those that are squeamish turn away now. They cut the muscle, so they can move your eye and get to the back of it and then they sew the radioactive metal disc to the eyeball, so that it is covering the tumour. This metal disc is the size of a two pence piece. Mine stayed in place for just over three days.
Luckily at this point my husband had a pen and paper on him as the list of what to do seemed endless and I wasn’t taking anything in. I was told that I would meet up with my eye cancer specialist on a regular basis, in fact I was told every six months. Why? surely when the tumour has been burnt I’m done? Wrong. There is a risk it will return and certain side effects I would learn about about further down the road. I also needed to have an oncologist. This was because there was a 50% risk this was metastasize in my liver, I needed someone to keep an eye on this and organise liver scans. This would also be every six months. I would be having a full body CT to see if it has already spread and lung x-rays and a full blood count. I was given numerous forms and numbers to call to make various appointments. The first port of call was to go down the road to the London Eye Clinic and get photos done of my eye.
This was too much information in such a short space of time when I felt like my brain was no longer working. I needed the world to take a pause. But it didn’t and I could feel the soft vibrations of my phone in my bag as we stood up to walk out of her office. I needed to call my family but desperately wanted to put it off. Those phone calls were the worst I’ve ever had to make. In one call I was shattering their hopes that this was all just a false alarm.