Surgery was booked for Monday and I had a few things to do first. What I had been putting off the most was reading up about the biopsy and making a decision on it. I had been told that a biopsy could be done of my tumour. It would give me an idea as to whether or not by tumour was aggressive. It is not 100% accurate, but pretty close. There is also a tiny, minuscule risk of seeding. This is where when they try to take some cells away with a needle they accidentally let some loose to cause damage elsewhere. This biopsy could be done in Liverpool and would need to be done before my radiation treatment. During this time I joined the wonderful eye cancer charity, Ocumeluk, which offers all the information and advice you may need on eye cancer. They also have closed Facebook groups which I joined to moan to my heart’s content. Asking for people’s feelings on whether to biopsy or not at times seemed like I had opened a can of worms. I was hesitant, I didn’t think I wanted to know whether it was the aggressive type or not. I felt I was definitely in the minority. This was when I needed to take a step back. I came off the group site and read information on my own. During this time I had some wonderful supportive messages from people telling me to trust my own judgements.
The hard decision was eventually made. I decided not to biopsy. It wasn’t an easy decision but it had a number of contributing factors. The idea that there was a small risk of seeding was a risk I didn’t want to take. Many people offering me advice had larger tumours where you could argue it’s easier to take a biopsy from or eye removals where biopsy risk is negligible. The tumour in my eye was only 1.2 mms in-depth. I think you would need a pretty steady hand to insert a needle and aspirate some cells, I’m not saying that my eye surgeon had shaky hands, but it was just a risk I was unwilling to take.The other reason was that I would have wanted only a positive result. If I was going to die in five years I would rather not know thank you. I want to enjoy very day and can only do that by knowing I have a future, not crying for what I am about to lose. Everybody’s decision is completely individual. I felt under pressure to quickly make a decision before surgery and I worried I would regret the one I made. A year down the line I have no regrets. If I could be biopsied tomorrow, I still wouldn’t unless it had an effect on my treatment. I am never happier than sticking my head in a big pile of sand while sharing a cold glass of bubbles with anyone that can swallow.
Next on the to-do list was what to tell the children. It seemed pretty apparent from people with experience of cancer, whether personal or in the professional capacity, that it is not a good idea to keep the children in the dark. They start to pick up on things and often their imagination is far worse that the reality. But I just couldn’t. I didn’t want to upset or worry them. I didn’t want to see them cry, but most importantly I didn’t have the emotional resources at that time to reassure them that everything would be ok, and until I could do that then they were joining their mother in the dark while I had my head in the sand. It was the cowards option but worked in the short-term. So with a brave face I dropped middle daughter off to the school coach for her trip to France. I desperately wanted to squeeze and smell her, cry and tell her I loved her, but instead I smiled bravely, told her to have fun as my independent eleven year old didn’t even take a glance my way as she bounced onto the coach to join her friends. I cried on the way back to the car.
Next was youngest daughter. I had to tell once her sister had gone and I couldn’t put it off. So mid morning, while she was in the bath and I was brushing her hair I asked her if she remembered my eye test. I explained that it was all a little odd as they had found a freckle in my eye and seemingly if left these freckles can make you sick. she asked me how sick, and whether I could die. I lied as I told her that they couldn’t make me that sick, but just a little. Also I would be going blind in that eye (had I forgot to mention that other bit of shit news?), but it would all be ok as who needs two eyes anyway? The hardest thing for her was that I would be in hospital for the week and she wasn’t allowed to visit. Due to the radiation under 16’s were not allowed in. This made her suspicious that things were worse than they seemed. I reassured her that I would FaceTime her and more excitedly she was going to one of her school friends every day after school. I think she even had a sleepover on that first night which was definitely unheard of on a school night. Plus I had spoken to her teachers and requested no homework all week. No Homework, sleepover’s and play dates everyday? She was ecstatic and I was starting to worry that a week in hospital wasn’t quite long enough. She was starting to see the benefit in this “naughty freckle” as we were now all calling it.
My eldest daughter was meant to be at uni, but like all best laid plans, decided to return for a few days in between exams. Being nineteen meant that I had to be honest with her. I reassured her that it was small and caught early but pleaded with her not to google it as it sounds hideous. I started telling her of all the people I knew with really bad cancer who were still around to tell the tale. “Look at so-and-so, she should have died years ago, she’s still here! And what about what’s his name? Walking corpse but still around. And you could die in a car crash tomorrow, but don’t go round worrying about that.” So all in all I think I managed to reassure my children that there deaf in one ear mother and soon to be blind in one eye mother would be around for years to come. Lucky them!
With most of my list done there was only one thing left to do. Pyjama shopping. And I’m sure I probably enjoyed a sneaky glass of bubbles while doing that too. Roll on surgery, I was now ready for you.