VHL - is it rare?

 My pal's brother has had to have emergency surgery - hemangioblastoma in his cerebellum. They have suggested he gets tested for VHL.

Small genetic world. 

His father is unknown - he is probably the carrier- too long a go to have been my brother. My pal's half brother. 

My brother was always told he couldn't be reckless. 

He never was, we think. 

Imagine if he was, a niece or nephew. 

triggered

This morning as I waited for my husband to get ready so we could go to breakfast he was listening to a podcast and a female surgeon was talking about the sexual harassment she and many others have experienced. What she described and talked about brought back my fear and memories of the times I've felt afraid and abused at the hands of medical professionals. 

Some minor moments of not being listened to, the lack of knocking on the door, the assumption that they can do things to my body without explanation and care. 

And the harder ones, the time I knew I was being sexually touched by a male nurse doing an ECG. I didn't know how to report it. The time I was treated like a slab of meat and my pubic hair shaved in a hurry without care to get the job done. Being hurt and told it didn't hurt  The moment I wondered why I had bruises in strange places after surgery. After my c-section having a man shove his hands inside me, remarking that I shouldn't be able to move my legs that much as I squeezed them shut, he hadn't warned me. 'A sweep' he said as if it was the routine I should have expected it. 

Perhaps I have more of these than most being a frequent flyer - I'm mostly very happy. 

The women said she hadn't experienced much in recent years, sighting that she had changed. I too became hardened to the system and found ways to protect myself. To ask for what I want and hold the gaze of the medical staff who thought they knew better. Until they could justify why they did. Asking why the door wasn't knocked, pointing out my rights. Requesting my family are informed and having someone with me. 

But still I cried as I explained my memories to my husband and felt it all again. My vulnerability each time I go. My need to meet the surgeon and know that he's (all but one have been men) a good guy. 

And the light is being shined on this - good. 

#metoo

I miss him

I'm really missing my dad. This week I've dreamt of him often. I've woken up crying and I've sensed that he's not here. 

He's the only one who really could know how I feel some days. No one else, not even those with the same disease.

I could always ask him.

I could always tell him

And he's gone. 

I'm feeling empty and today a little bit afraid. 

The death if Ros. 

Another one gone. 

I'm wondering who will be next. 

You weren't my aunty but you were

 I didn't even know she existed until my brother stayed with her and my mum's cousin Tim. But I didn't register that, a couple of names of relative who lived in London. 

Then as a 21 year old I was suddenly in need of a place to stay and not just for a night but for months and she and Tim said yes without any reservation. And how she looked after me, how we talked, Ros was such a generous person, with her care and love and often her clothes too, she was forever trying to give me items she had decided she wouldn't wear again. 

She cooked the most fabulous and flavourful lamb shank I have ever eaten and her roast dinners were divine. I ate so much while living with them, I ended up the heaviest and plumpest I have ever been in my life and I include my time being pregnant in that calculation. I couldn't resist that early evening G&T and the expensive and quality wine while we ate. 

If you haven't trained to be a teacher you won't fully appreciate how hard that first term is and She and Tim looked after me and made it a much easier experience. We stayed in touch over the 20 plus years that followed, they coming to us and being there not long after my little girl was born. We caught up whenever we could, at least once a year until COVID stopped so much of that and I so hoped that in July we would take the trip out to St Albans to see her and make each other laugh, I can hear it now, that slightly dirty chuckle of hers and how she would almost wink at me when my husband said something she thought was dirtier that it was!