AW18

It’s a cold Saturday afternoon in late October and I’m heading back from seeing the surgeon who, in August of this year, performed a procedure to straighten out some of my vision. She’s just told me that the recent reoccurrence of double vision over the last few days is possibly down to my visual field decreasing. More tests- and a number of emails to be bandied across from one hospital to another- with a review in a month and eye occluded in the mean time, I continue this harsh journey with Ocular Melanoma. I’ve had it with cancer- it’s been an horrific couple of weeks for my family. One new Melanoma diagnosis, one hospice instructed after a long battle coming to an end, one in intensive care with a ‘nothing we can do for you, it’s everywhere!’ and that’s just direct family- not to mention the amazing people I’ve met through my OM experience, some of whom are nearing the end of their travels on earth. Trying to find the sparkle in life is sometimes super tough- but find it I will. And my own, masked at times, but there, under any daring oppressive cloud that may attempt to dampen it’s glow. I’ve noticed some people sparkle brightly- and thank you to those of you who do, as we gain strength from each other. It’s now nearly 8 days since the newest chapter of my visual journey began. Having been back for my third tumour scan since the initial radiotherapy, which I am pleased to report the bastard is stable and has not grown, I am now struggling with suspected vision loss. More tests- argh!!! The most disconcerting thing that has happened is my own reflection looking back at me with 4 eyes! (Not to mention the morning I glanced over to Greg as he was dressing and was deeply disturbed to find his head buried in his stomach) It’s not a standard double vision issue, the muscles have all been surgically put back in place. This is the brain being unable to layer the images from the left and right eye over each other to make a single view. Instead the old grey matter machine has said ‘bollocks’ and stuck the ill shapen image that my left eye is producing, directly above the other one! And they say the brain is a clever organ. So with brand new glasses, prism lens affixed, I await the wonders of the MRI machine to try and tell us a story. Speaking of scanners, it’s that time again already. So now I have triple scan day on Monday. CT, with newly tolerated contrast, liver MRI and brain, including ‘Orbit’, which will hopefully shed some light on the recent visual miss-hap, while we pray for NO lights whatsoever on the other two. ‘How are you sleeping?’ I was asked earlier today by my G.P. Actually, pretty good, for a change. I’m trying a new approach to pain relief and it’s lovely side effect is a damn good nights sleep! It doesn’t seem to be doing much for the pain though I have to say. So bumbling along with my sore joints and my wonky eye, I board the freight train that will motor at high speed towards the new year. I look back over this last nearly 12 months and still can’t quite take it all in. Sometimes it feels like it’s all a dream and I’ll wake up feeling relieved. Other days I’m grateful for all the amazing things that have come about in this time. And then there’s the moments that I wish to erase. Feeling less lonely now than I did in the beginning, I find strength and courage in sharing my journey. It’s been a hard thing to share as not many people ‘get it’ but some do, and if you don’t reach out, you might miss those people.