hello new place

I'm sitting waiting for an MRI. A new one. The form is almost the same. The wait feels a bit different. I'm not nervous of the scan but instead what it represents. 

I got the wobbles yesterday and this morning. I had the intense and real worry of the 'what ifs' 

What if it has grown lots

What if the cancer has spread

What if they cancel the operation

What if they don't

What if I die

What if I lose the whole kidney

What if my recovery takes longer than I'd hoped

What if

And the 'then whats'

Then what will happen to my family

Then what will happen to my new job

Then what will happen to me

Deep breaths 

when you are not

Writing to be seen

maybe when

Maybe when it's too repetitive

Maybe when it's not a simple cure

Maybe when you can't feel too much pain

Maybe when your body says "no more"

Maybe when you hear real understanding

Maybe when you don't survive

Maybe when you're at you're lowest

Maybe then your fight is live

Time to go...

There is a clear theme when you have a disease like VHL... waiting. Waiting for appointments, waiting for results, waiting rooms, waiting games. 

I think most of us learn to forget the wait at times, it sits quietly in the back of our mind and surfaces most when someone else, who is waiting too, asks "do you know when..." or "have you heard?" 

This week, an appointment I'd been waiting for arrived quickly and happily when I could go easily without a lot of rearranging and adjustment. And at the end of it I have a better idea of how long I need to wait for the next bit. I don't know exactly of course, that would be too easy, that would be too convenient. And so I give my news;

mid-December. 

So I'll wait to find out the exact date and then I can plan more. It doesn't just impact me, it means my work, my family and my friends. It means cancelling things, probably, adapting things, likely and a period of recovery, definitely.   

and then, of course, because it is VHL

wait for the next one.