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. 

Thank you VHL alliance

 I waited until I was back from my holiday, despite the temptation, to ask for the scan report. It came back within the hour. That was impressive. I read it and compared it to the last full report I have. 

Then I had a little wobble. 

I sent the report onto my Prof's secretary, with the sing song tone that says - I don't want to bother you but I want you to look. And I got a reply within the hour. Not an answer but I know I've been acknowledged and now I will have to wait. I can do that.

Then I had a little cry and got a hug from my husband. We talked it through, best to wait. The report didn't seem very thorough, the MRI machine wasn't as high a T number as the others, they could be looking from a different angle. I quickly calculated a thousand different outcomes, the best being  - we can still wait and the worst - well... going back to the fear I felt in 2013. I even began to think of the cost of more scans. Would my insurance cover it? I have savings - I can use those. When would be a good time of year for surgery. Then my calm husband held me again. Breath and just wait. 

I thought about telling my mum  - but she worries and I don't want her to, so I looked again at the report. And did a bit of googling, before finding my way to the place on the internet I should have started with! 

Kidney Cysts, Renal Cell Carcinoma : VHL Alliance

this bit

Cysts are generally not considered sufficient cause to operate, even if large. In the rare event a tumor is present in the wall of a cyst, it will be important to watch the size of that solid tumor, not of the cyst.

and this bit helped 

Tumors typically grow in steps, with periods of little to no growth followed by periods of rapid growth. Looking at tumor growth over a number of years, NIH has found the average growth rate is 3-4 mm per year. Generally, growth greater than 5 mm over a year is considered accelerated.

and so the left one has gone from 13 x 12 mm to  29 x 23 mm cystic lesion

no news on the right one

I'll wait

just wait

Fuck off to Disneyland.

My mum and I would wonder when I would get my...fuck off to Disneyland moment.

Your cancer needed to be terminal.

But we never really know. And it will come back, without doubt. So we realised, we don't get to cash in and fuck off to the life long dream.
Mine is not and never has been Disneyland. But it seemed the most popular choice.

Today, as I watched the clouds over lake Malawi and let the wind cover me in a smooth coolness on the boat that took us from island to island, and as I looked at my new friends and beautiful little family, I realised, I've done it!
I've had my 'life is too short' escape.
Malawi is my Disneyland.

2019 will have some surgery in it but I'm determined not to let it spoil this escape.

Postmum Pat

Two letters arrive at my old, old, old, old, old, old address.
They contradict the emails I've had.
They send me into the state of the unknown again and they make the evening frustrating and I feel sad and confused.
I'm now back in the doubt and so despite feeling I knew what the plan was, it's changed or has it?