Words

Sometimes there just aren’t the words to write on here- or to say, so silence speaks volumes. There’s been some sad news amongst the OM community over the last week to ten days, and still there’s no words to console or comprehend this shit cancer. We will fight on to find a cure though and together we will be heard by the medical profession. Apologies for the heavy opening, but this isn’t always light hearted observations and a few personal feelings that I want to share. So my surgery last week went well. Nothing sinister found after surgeon went on a fishing expedition within my abdominal walls. Just another rack of stitches and 3 new scars to add to the plethora of pre existing holes that have already been drilled in me. #voodoo More good news- the distance between my double vision is reducing- fractionally, but all the same, there is an improvement. I will add that this does not yet mean I’m tightrope worthy or even capable of judging my way downstairs without closing one eye! And slow blinking, if that makes sense, is scarily hi-lighting a small area of blindness, probably caused by the radiation treatment itself. Same place as the never forgettable lava lamp flickering. This delightful disease just ‘keeps on giving’ or taking, depending on how you look at things. I’ve been trying to look at things on a daily level and with an upward glance, moving steadily in a forward direction. So WHY do somedays I feel like I’m climbing the North Face ice wall in a bikini with sun oil on my hands and feet. I agree that’s not a particularly suitable image to publicly declare. I think it’s still the reasonably steady flow of ‘your eye’s looking good’ comments. Well Tuesdays going to change that for a while! Tomorrow we leave for Liverpool in the hopes that the Professor there will find my tumour and eye health suitable for biopsy procedure on Tuesday. Oh my, another general anaesthetic to add to the tally. I have heaps of admiration for OM patients, like myself, who are actually far more able bodied than I am. There’s a bunch climbing Snowdon, there’s s few running marathons, cycling etc. But I’m fighting a battle with another rare health condition called EDS (Ehlers Danlos Syndrome) I do have this to thank for my prompt diagnosis of OM as it was due to having this connective tissue disorder that I saw the ophthalmologist quite promptly and he found my tumour. I have kind of ignored the EDS whilst the big ‘C’ took centre stage but I feel it’s time to pay it some attention now, especially as I need to learn about it to be able to guide my children through their own journeys with it. Strength and courage, understanding and support, acceptance and knowledge. A bunch of words I need to associate with daily life.