The Real VHL

For my partner this is the first real journey into the reality of VHL. We have been together 6 years and he has heard the word tumour so may times and he knows I have them, he knows my dad has them but so far no need for treatment. And so here we are slap back bang in the bit that makes it as bad as it is. It’s been a long time. Long in my sense of it. And I found myself thinking, ‘thank god I got pregnant before he found out the truth.’ So yesterday I felt guilty and today grateful. He would have probably run off and got a vasectomy if he knew. It’s a rough time ahead. I’m wondering if having been through it a few times now if it will be any easier. I may be being a bit premature, as we don’t know if they are going to operate yet. I don’t feel quite so sad today but I do feel anxious. I’ve started tidying, my coping mechanism. When I can’t control the health of my family I start controlling the environment around me.

I have a haunting memory of saying goodbye to my dad the last time he has a brain operation. He walked down to the exit of the hospital with us and I held him tight. The ‘I love yous’ flowed but the tears didn’t; we had hope in our hearts and minds and at the same time I felt deeply fearful. I felt full of sadness and I was a very scared little girl. I was about 13. I didn’t know if I would see this version of my father ever again. I did, as you know. My family have said goodbye to me; three times. My partner doesn’t know that feeling; but he will.

In a bizarre way I suspect this will help his understanding of my family and my ways. It could be a very important development and make him a better father to our little girl. He doesn’t need it to be an amazing father but maybe, just maybe this needs to happen. My eldest niece will find this very hard; she is nine. She is a drama queen and she’ll find it very hard to reconcile her real emotions and her nature to blow them out of proportion. I know this because that’s me too. I’ve had to learn to not be hard on myself when I indulged the fear and grief that comes with it but more importantly I’ve learnt how to lift myself up and get on. She is learning these lessons at a very young age. She already understands grief because of her parents splitting up but this is a different flavour of it.

So my partner and my niece will be doing this for the first time together.