Post Op appt #1

Well that was a sleepless night and a very dark start to my day. I couldn’t shift the frame of mind or the sense of unease that was surrounding and clouding my thoughts. Final straw was an extended and unexpected traffic jam closely followed by ‘get me out of here, I’m catching a train!’ You can’t miss the first post op appointment; you need to know whether the treatments working, if the tumour is responding, have the stitches all gone, where’s my eyesight at? And then there’s all the questions that have been running through my head for weeks now as I learn more about OM. So safely deposited at the nearest station I head off into London. Mixed emotions as you walk through the door of the building where you first heard ‘those’ words, as you certainly do not want to hear any further unbelievable news. This time WAS different though. A moment with your head resting on the chin support as you look left and right and finally hear that its good! And breathe…… it’s not grown and appears to be less active so it seems like the radiotherapy is doing its job. Oh man am I relieved, as is Greg, who having deposited me at the station and remained in the car for a further hour, was sitting on speakerphone on the desk next to me. Kind of funny looking back now, but with technology as it is he was able to hear first hand what there was to be said. The practical issue of my double vision can also be addressed at this time too. With a bit of luck there may be a prism lens that can adjust the visual field and alleviate the left hand multiple images that I am struggling with. Nothing surgical will be done to rectify this until 6 months after the plaque’s removal. 

So feeling strangely lighter, I left the clinic. The day was a little marred by the following set of appointments to discover what was causing the abdominal discomfort that has started the other day. Not being one for a moan, I have developed the skill of not settling for the ‘it’ll go away’ spiel. Anyone suffering from a rare condition, or two, will appreciate that convoluted response that you get from people you haven’t met before in the medical profession who need you medical history. Mixed with the awkward questions to try and piece you together on a couple of bits of paper. A far cry from your name, date of birth and tonsillectomy age 5! I often wander if they are secretly thinking to themselves, not this one, it’s Friday afternoon. So prod and ultrasound later we’ve found something. It needs an MRI, funny that, another MRI. It looks innocuous but it’s causing an issue so will be checked. 

Tired and hungry it’s time for home. I was so glad Greg had heard the conversation between my surgeon and my eye as I become wordless, regularly.