02 I Have No Idea What To Do Next
What I didn't do next was sleep, that wouldn't happen for a few days yet. It amazes me at times how many thoughts can be in your head at any one point. My head exploded with 'what are my next steps?' I need to tell people, family obviously but we are spread out and I want to tell them all at the same time. My three daughters know I am in hospital and are messaging me. I am not going to tell them over WhatsApp that I have two brain Tumours, we need a Zoom call, when? Just the girls, not their partners for now. I need to tell the team at work. Good friends should hear it from me, not second hand. This kept me going for ages as I kept reordering, it didn't matter I had no chance of sleep. Then you start wondering how much time you have left - how serious is this, terminal, curable, treatable, where next? We need to sort so much out, finances being key, mainly tidying up but is this urgent? Sitting on the bed reflecting causes many emotions and thoughts to drift through. Initially I felt disappointed that I have got so near to finally retiring only for this to happen, is that fair? Should I just feel sorry for myself? How much does this hurt us now? In reality it doesn't hurt that much, if this had happened in 1996 with three young children and a large mortgage it would have been terminal financially, total disaster. We can cope with this now in 2020.
I'd just finished kitting out a small gym in the summer house in our garden, perfect as I have a great facility at home for getting over this, I'm having a good night getting through this I guess. A solution to migraines and loads of positives, long may this continue!
When I got tired of thinking I read. Peter James 'Dead If You Don't'. I had started it in A&E and was now half way through it, it was the wait for the CT Scan results that gave me so much reading time, a cracking read and good choice to bring with me.
I have so many thoughts that I decide I need to do a blog! Great idea! Capture all of this, write it down, record thoughts on my phone, just brain dump. I need to track this, the emotions and feelings, fears, concerns. In a brief moment, what ever way you look at this, my life has changed. Suddenly words like Tumour and Cancer apply to me, they always applied to others. I can't even say these words out loud, not even think about saying them out loud. I have to be strong, I don't quite feel that way yet and know that I have to somehow confront that. This is going to be part of my life, the new me for some time to come, maybe even the rest of my life.
There is a line in a song by the Drive By Truckers 'Goddam Lonely Love" written by Jason Isbell, he sings "Well I ain't really drowning 'cause I see the beach from here", it's been my default motivational strapline for ages whenever I face a difficult challenge, it just helps me to focus so that is going to be the title of my blog, there's hope so long as I can see the beach. Jason Isbell will pop up a few times through this.
Funny moment for me in the night....When I was being triaged earlier in A&E with a suspected left side stroke I was continually asked if my taste buds had changed and kept answering no. At 03.00 one of the night nurses brought me a cup of tea and a packet of biscuits, I was so hungry and devoured the biscuits before realising that they were Ginger Nuts.....I hate Ginger Nuts, have done all my life, but now I like them! How odd? Changing taste buds, this will continue as well.
No sleep at all then on Friday. Had a call with Annette on Saturday morning to discuss the results; we both feel positive and relieved that something has been found. Nothing found would have been devastating. We know we have loads to discuss and plan.
Saturday is spent just hanging around, I need to get meds to take home with me, Steroids to reduce the inflammation and Omeprazole gastro resistant capsules to help with the effects of Steroids. Need to see the Physio team to assess my walking into things and to check they are happy to release me. More reading time then.
Two doctors come to see how I'm getting on. As they are leaving they tell me that my driving licence will be revoked and not valid until two years after full remission. Wow, not expecting that one. I mention that I am a cyclist as well, they advise that until clear it is probably the best course of action if I avoid using roads. Disappointing, but on reflection fully understood. What are the impacts, well now I'm fully reliant on Annette to drive me around for the foreseeable future and this will impact me for music as I need to travel to New Milton twice a week. I play mandolin in Folk Orc, a large ever expanding group of Folkies, as well as a five piece Americana Band called Devils Courthouse (need to tell the band asap as well). It's a 38 mile round trip and cannot expect to be dropped off and picked up; this needs to be reassessed.
The other issue is we have a large campervan that only I drive. We use it all summer for Folk Festivals around the UK, to carry Kayaks around and just weekend breaks to Dorset. Annette has never driven any type of van that large so another change required but we can do that. We like challenges.
The afternoon dragged on, my phone battery was very low and I needed to call Annette when I was discharged so I switched it to low power to hang on, finally released at around 17.30.Picked up, back home and food at last! I was so hungry, must be the steroids.......
Devil's Courthouse at our Favourite pub, The Wheel Bowling Green Pennington. Summer 2019, Covid free world
Focus on the positives
There are too many negatives in life
Negatives drag you under
Positives raise you up