Well we know where we’re going
But we don’t know where we’ve been
And we know what we’re knowing
But we can’t say what we’ve seen
And we’re not little children
And we know what we want
And the future is certain
Give us time to work it out
Road to Nowhere – Talking Heads.
There appears to be an unspoken understanding about the level of illness based on the car parking situation at the hospital.
I often arrive early for appointements and have a coffee, people watch and occasionally start up or join in conversation with strangers. There was a conversation about the cost of parking and a lady turned to me and asked how much it costs me each week? I get free parking I replied. She reached out and touched my arm, “oh I’m so very sorry” she said “how are you feeling”?
There was a void. I time between having that first phone call from the doctor, the initial consultation and tests and obtaining a prognosis. Looking back this was the worst time. A couple of weeks of What if…?
I knew it was serious by the speed of action for the various professions at our wonderful NHS
This was now followed a period much quiet regarding communication, and a period of extreme, sometimes confused noise in my mind.
I didn’t discuss what was happening with anyone, it was a sort of ‘dirty secret’ .
I didn’t know what was going to happen so what was I going to say to anyone else? I maintained a calm approach externally whilst internally I was making plans for the worst case scenario, anything less than that, once exposed, would be a bonus.
Jan and Issy had been going to the WordCraft evenings at Bottlecraft in Hanley. Issy has been writing poetry since the age of 7, it is a passion of hers. We enrolled her into the New Vic youth drama groups at the age of 4 so she would have another circle of friends to those at school. She flourished under a culture of creativity and self expression and this early introduction to drama has stayed with her
She is now involved in after school drama groups three evenings a week. I am not sure exactly how or why she started writing poetry but I do know that she has a talent for it and wanted to go and see her take part in a Wordcraft evening.
I can find small gatherings of people like this more than a little scary. I cannot easily melt into the background if I am suddenly not feeling confident. I worried unnecessarily.
I sat listening to people of all ages express themselves through their spoken word some funny, some sad but all thought provoking. It was, as was expressed often, a ‘safe place’. I was taken aback by the creativity from all, some clearly nervous but having what it takes to stand up and express themselves.
Before long it was Issy’s turn and she strode up to the front full of confidence. gave an introduction to the first of two poems and delivered them both clearly and precisely without out a hint of nerves. Full of confidence about her creativity and her performance.
This was a room full of the best of people, a reminder of the incredible humanity that exists. People who I knew would help to nurture her talent should I not be able to.
following the poetry she chatted to people and ‘networked’ like she had been doing it for years, a complete natural.
Worst case scenario thought one that evening, how do you tell your daughters that you have a terminal illness?
Worst case scenario thought two that evening, well if it was to be I was tearfully confident that my work could be considered to be done, this young lady is ready to face the world.
This week I started the next phase of my treatment, the introduction of Ventaclax. A drug so powerful if they had got the dose wrong it could start killing the cancerous cells so quickly that my kidneys would not be able to cope and I could have immediate kidney failure. There was also the chance of allergic reactions. Comforting thoughts!
Consequently I have been in hospital a few day’s this week being observed.
On Wednesday morning I took the first two Ventoclax tablets at the hospital, sat and waited to see what would happen.
My trial nurse decided to take my blood pressure. It was completely off the scale!
“should we ignore that one and take it again in half an hour” she said laughing!
“good idea” I replied
Half hour later my blood pressure was normal (for me).
“I was probably the most anxious I have ever been in my life when you took it before” I said
“you don’t show it” she replied.
“I think I did” I said…
May see you soon, take care, be kind…