An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.
Saturday, September 21, 2019
Cancer of the elbow
Last night in the comfort of friends sofa we joked. I felt the relief of articulating my irrational fears, my elbow hurts.
Cancer of the elbow.
You see it was true for me that - you have hiccups you have a brain tumour.
I've convinced myself on so many occasions that I have something new, unrelated to VHL. I await the diagnosis of labial cancer, I won't get cervical cancer, I'll get something rare and not at all connected to VHL.
I have been aware for a long time that life can throw you anything, good and bad and as I accept my privilege and good fortune, I accept the unfortunate and rare too. I don't dwell too much and I don't let it get in the way, but it is there, lingering and insipid.
Thursday, September 19, 2019
Knowing your surgical anniversary
I don't, well only one of them.
The one that meant my baby girl came screaming healthily into this world.
That's the only one.
I've notice that the other 7 are not dates I can recall, I have a rough idea of months for some of them and I think, given some time I could give am accurate year. But all in all I don't know and I certainly couldn't post about my 1 year, 5 year, 20 year anniversary.
Mind it's taken me all of the years I've been married to get that into my head. And that's because my mum and sister always send me a text so I'm getting better at knowing that month.
The significance of this?
I haven't got the mental capacity to celebrate because there will always be another one. And I have the strength to know that each day is a blessing and an achievement.
So happy anniversary to anyone who has survived and thrived.
And to those who are getting by.
Monday, September 16, 2019
Having a cold
I'm not good when I have a cold, it irritates me so much. I get angry and I feel very sorry for myself.
I am good at tumours and cancer... well so far
but a cold, useless.
It's to do with feeling my energy is being wasted and my time is better spent recovering from when I'm really poorly.
Thursday, September 05, 2019
Fear and uncertainty
What will happen, what will it mean and when.
Most people feel they have no control or power to change anything. A waiting game.
I think you can see the parallels here...
The UK seems to have VHL and I hope the invasive cancerous tumours are cut out.