So the summer was spent toing and froing from home to the eye specialist. I was told after my initial post op checks I would eventually get to six monthly check ups. This didn’t seem to be happening,. The goal posts kept being moved. There was eventually signs of improvement. It was the orange pigment. It had gone. Nothing else had changed. I was reassured that this was nothing to worry about. As my tumour was small it actually may never shrink. I wanted it to shrink. I wanted the damn thing to disappear. I didn’t want it lying there dormant waiting to wreak its havoc whenever the fancy took it.
My post op in June was satisfactory, I was told I could have a two month break, that was a fantastic relief. It was the longest stretch of not seeing anyone, it was the start of the kids summer holidays so I was hoping I could put it all to the back of my mind and relax. But of course my good friends anxiety and panic wanted to pay a visit. Along with the decorator who I was starting to suspect didn’t have a home to go to. Not having any breathing space from the kids or from the decorator who had taken over my house, telling me to not look so worried all the time, I was slowly going doolali. The summer was hideous.
I’m not sure whether it was wrong or not, but I began reading and googling constantly, I needed eye cancer stories. It was the only thing that could calm the anxiety. I was trying to find a mirror of my story. Someone with the same size tumour who had never developed metastatic disease. It’s silly really but it was the only thing that would work. I would happily tell my husband about someone with a larger tumour than mine, who needed an eye removed but was 17 years on and healthy. These stories made me feel calm and gave me hope. The danger being of course that I would happen across a mirror story of mine where tragically it had developed into something worse. And of course with odds of 50/50 it was only a matter of time. Your mind is on high alert for any information. You read between the lines. Who said what and what did they mean? And the horrible information that I didn’t want to read came by accident.
I was reading through posts on one of the closed eye cancer groups. You’re only allowed in if you’re in the special cancer club. Ocumeluk had told me about them, the fantastic eye cancer charity. The post wasn’t anything that had piqued my interest, but I was reading people’s comments and replies while also thinking about dinner when I saw it, like a flashing beacon with alarm bells. A woman who was well-known on the group, with advanced metastatic disease, who had a medical background and was the font of all knowledge, replied with “….well I knew my tumour would metastasize as it had orange pigment and fluid…” her tumour was 8 by 2. She was my mirror. I physically heaved in horror. With panic I flew onto the forum asking how she knew? Where was the research? Where was her information from? She was off-line. I think because we are a small group, there aren’t many of us, people sense your panic and step in. I received a reply within seconds from one of the reps who was on-line. “Ruth, mine was bigger, with orange pigment and fluid, I’m 6 years on. No spread.” I think I had been holding my breath. I exhaled.
My husband wanted us to have a nice holiday to ‘take my mind of things.’ Anyone with cancer will know, you can’t take your mind of things. However hard you try. We thought the best plan was a busy holiday, sight-seeing, different locations. Move around and don’t keep still.But I was exhausted. My lack of sleep had caught up with me and I was suddenly sleeping beauty, well less of the beauty and more of a comatosed lump. An all-inclusive was what was called for. The kids could be entertained if needed and I could relax and sleep. That was the plan. What we hadn’t accounted for was my eye playing up. The flickering that I had seen slightly at the beginning of this process, was back. I would lie under my umbrella with a sun hat on looking out to sea at the para-sailers floating by and just notice flickering and flashing. I was restless. I wanted to go home but I needed a break. That’s the other bastard thing about cancer, it dictates if and when it will give you a break, you are not in charge anymore. So we had paid for a wonderful holiday, the kids were happy, my husband had time of work and I was convinced my tumour was growing. There was only one way to cope with this, I was going up in a para-sail.
The unusual thing about this is I am actually terrified of heights. My first and last ever ski holiday I had to be rescued by some sort of mountain rescue as I has taken the wrong lift up and instead of getting off at the top of a green run I was at the top of a black run. My rescuer accused me of being colour blind as well as scared of heights. So my eldest daughter was right to look concerned and try to talk me down. What she didn’t realise was that I wasn’t scared. I had already experienced the worst fear of my life, not the ski experience, although that was pretty bad and actually not the cancer. It’s the fear of not being around to see my daughters grow up. The fear of dying and leaving them without a mother. So what was a stupid old para-sail when I was dealing with all of this. I took my fearless middle daughter with me and we floated up to the clouds. It was incredibly quiet up there and peaceful. For a blissful ten minutes I just marvelled at the beautiful world below me and didn’t think of my eye at all. It was incredible.
I think I might book a skiing holiday next!