stillness

It's the stillness I have here that makes it better for me I think.

Reflecting on my work like balance, seeing and hearing about the pace of the UK, the relentless pursuit of simply keeping up that schools have. There I felt guilt for staying still. For each break, for a moment to myself.

Not here. 

And that's how it should be. 

rare but treasure

It isn't often that I get to be useful in my experience of the medical world, but I could be tonight.

I got to say things that helped 

I wanted to give comfort and hope.

I think I did 

I'm evidence of survival and I'm evidence of being the watcher, and the watched. 

median age

49

So, about 6 years to go then. 

What should I do?

I know, live my life to the full. Maybe try and spend as much time with my daughter. Perhaps spend some time in another country, live life. Live Love Laugh.

And also... Be at the other end of that Bell curve... Love until I'm a healthy 90. 

the wood and the wire

Tonight I watched a new tribute to my dad.

It was beautiful.

It was real.

It was important. 

Belzutifan

Today on Facebook I saw that the drug belzutifan has been approved by the FDA.

I know it might be some time before it's approved by the UK, I know I might not be eligible to use it, but I hope so much that this means I can look forward to my life. A life that might not have so much surgery, one where I can take a tablet and avoid being cut open and all that that means. I'm crying, I feel like they're is a new layer of hope on my life.

I don't quite know what I'm feeling... Relief maybe, like a breath I've been holding can be let go. 

I know this is still just the beginning, how many times can you take it, is it permanent, will I find out I suspect. 

turning 43

I will turn 43 very soon. Closer to my desk by date. 10 to go. 

I've been on holiday and had a genuinely relaxing time. As we get closer to home the reality of work and real life has been creeping in. With that my dreams had changed. For the last few months I've dreamt my dad is still alive, I hug him and hold him. Confused by the diagnosis of death. Trying to figure out what we do 'legally' seeing as it's so patently obvious he's still alive. But the last two have been different. He's dead in those and I know it and I can't hold him. Maybe I'm just processing this. Maybe my mind wasn't ready to let go. I'm still not. I want to keep my chance to cuddle him. And properly, as it hurt him to squeeze too tight in the last years of his life. He couldn't really give me the huge hugs he did when I was younger. 

driving home for Christmas

Life can free so very different if you know you have a plan 

I'm hanging on the high hope of making it home for Christmas. 

I'm happy here, but I really feel I need to hold my mum. See my home without my dad in it. 

To know what I'm missing. 

To be really cold again. 

To then fly 'home'

is everything my dad?

I imagine that this is normal

Everything is my dad

scantastic

Great news, another 6 months. I don't trust it. Not in the way I would if it was the MRI the team, the same. But it'll do. Better then nothing at all.

And so here we go again. 

It's definitely rare to live like this. 

Recently people who know me have remarked on his well I cope. These are new people, but yes, good, I'm glad you noticed, yes, broadly I do. 

Here I am. 

Could I do it differently?

Yes.

I have and I could.

Should I? 

Time

Time

Time. 

I'm not as tolerant as I want to be

I'm feeling unnecessarily annoyed by the people around me panicking about getting their second vaccine.

It is about being able to travel in most cases. It doesn't feel like it's for good reason. 

And I'm trying to sort out a kidney scan and that is important. And so I'm grumpy and having to hide my irritation. 

The contrast of trying to get a medical thing... 

Humph

that footballer

Twitter seems full of people saying what an important reminder that a rich, physically fit white man collapsed in the middle of a match has reminded them what the important things in life are.

They really are sad and I'm glad they have had this prompt.

I assume he's doing a job he loves.

He had help instantly.

It nearly all disappeared before millions.

But why do you need this as a reminder. Keep your eyes and ears open and you'll see reasons to live life to the full everyday.

Is this a way to make reason out of the unexpected? 

Death here is frequent and unquestioned. 

planning a scan

I know that I'm due. My kidneys are on a 6month watch. I feel like I might be the one person who has remembered this. 

I'm having to have a big think about this one. I waited 'too long' last time but happily all was well. As well as it gets.

Now I have to think about what is worth me doing to get the next scan. What will it cost, where will I go? I don't know what my insurance will say. The last one felt like a bit of a once in a life time treat. 

Maybe not. Maybe I pay enough. Maybe.

What I do now is that it's playing on my mind. What is that cancer up to? 

Is it dormant, is it slow, should I get treatment? 

Questions with no answers. They are the most frustrating ones.

a day off

If I was in Norfolk right now I'd be busy. I'd be helping with the preparations. I'm not, I'm here. 

I'm taking my morning slowly. I decided not to go into work. 

I'm not very good at taking time off. I like working, I enjoy my job, but today I knew I needed to stop and be, feel all the things today. 

It's raining (highly unusual here) like the weather is caused by me and my mood. I'll know if that's true if the clouds break after I've said goodbye. 

Today I'm doing almost nothing this morning. I'm still in bed. I'm just letting this all be.

I'm remembering and feeling. 

My dad.

Always brought me a cup of tea on school mornings.

He took the dog got a walk.

He dressed well, had style.

Music meant a huge amount to him.

Best cook.

He never really complained. I don't remember him moaning. He didn't get cross about very much. He was more disappointed. 

He did art.

He was a teacher. 

Those who chose him as a friend loved his sense of humour. I must admit I didn't always get it. They induced a roll of the eyes and a groan from me more often than a laugh.

He was proud of me. 

He was up for an adventure.

He had great hats.

He liked Coventry football club.

He took on surgery like a fucking legend. 

I don't remember him ever really getting drunk. 

My god his curries were good. 

He was a solid, strong and quiet man who I will always love. 

He gave good advice. 

I feel lonely

 because, despite the love and care and the huge amount of support I am. 

My dad is dead, so is my brother. Just me with VHL. 

And of course there are others, but all mine have gone. 

Just me. 

Me. 

how brave will I be?

A friend sends me links to articles she thinks I will find interesting. I always do, this week she sent me one about a remarkable woman who had a spinal injury and what a amazing attitude she has and how well she is loving and living her life. 

I wondered if this was to remind me of how my dad lived his. I don't know if he loved it, he inspired so many people, apparently. Tributes coming in, what remarkable bravery, how wonderful he was... all that. I agree, of course. I thought at first it was her way of saying, "if you end up like your dad, you'll be good."

The tributes are really lovely, I enjoy reading them. 

I think everyone who has been in touch has told me how hard it must be being so far away. Yes, it is and yet it isn't. Honestly I'm getting on. That's what dad did, that's what I do. Everyone who has been through this kind of grief knows that it comes and goes, up and down, side and rounds about. Hits you when you don't expect it. I think that would be no different there than here. I'm also struck by how many people haven't mentioned that I might go the way he has gone, how many might be thinking it a little more acutely than they have for a while. I think about it often. I also worry about the bits of me that worked perfectly well for him that aren't for me. To be specific  - my kidneys. I bet only a very few worry about that. I don't remind them. 

outliving

My mum will often comment on the age she needed us to live to, older than her nephew who died at age 4. (I think)

When my brother died my milestone was 22, next came my dad's mum's age, which I guessed at, 30ish. Then the age was given as the median age, 53, so that one has become my next and now a new one to beat. 72. 

my VHL warrior

Our dad was kind, strong, stubborn and had a terrible sense of humour, one that, well after his hearing had begun to fade and his speech harder to understand he refused to give up on this. His favourite joke with us seemed to be hilariously pretending to run us over with his wheelchair, but with his less than perfect coordination, more often than not, this would mean a squashed foot or bashed leg. His grandchildren quickly learnt escape and dodge, sadly not so for Jo, me, my mum and often the dogs.

All three of us know his seemingly endless patience, most demonstrated when he taught us to drive. Dad was always willing to help us learn and grow and encourage us to follow our hearts, be that travel, people, careers.

The messages coming through highlight his level of generosity, his willingness to give and share. He loved to cook, thanks to mum. If she hadn’t tricked him into starting to cook when we were little children, we would have had to endure many of her creations. Dad’s meals were wonderful, except that that banana and cloves thing, his most memorable mistake. He adored searching for ingredients and making meals for friends and family, using most of a Saturday to prepare delicious curries or other recipes he had studied in his vast array of cookbooks.

He generously shared his love of music and he would serenade us from his room, playing guitar while us children were trying to get to sleep, sounds of Dylan and Elvis Costello helping me drift off in my safe sleep. He loved to perform and when Jo got married it was a privilege and joy for me and dad to sing for her, we practiced so hard and we spent hours working on the timing and phrasing, almost getting it right on the day.  Years later, I remember the pride I felt as I watched him host ‘The Wood and the Wire’, once again giving his time to gather people together to share and enjoy music they all loved.

He gave lifts, memorably to a lost man on a roundabout, who then ended up staying at our house for a night, my dad gently waking me with the cup of tea he gave me every school day morning saying,  “Don’t be alarmed but there is a French man in the kitchen”

Perhaps one of the best gifts he gave me was my determination to be a teacher. Getting the ferry across to Greenacre during school holidays, I knew that he was a great teacher. He gave up his time to take his students on camping trips, and we would go along,  the whole family and a selection of students, sitting round campfires, making up ghost stories for the walk through the haunted forest. And he gave his dignity more than once, a bath of beans or performing ‘I’ve got you babe’ to a hall full of children, all falling about at just how silly he and Keith were. He gave his knowledge, passing on wisdom and experience, I’m not sure if he helped or hindered generations of children with his mediocre French or if he confused or amused all those students who were falsely informed that the Acle Straight is a roman road, but like his dad before him he inspired so many, some who will have quietly let him know and many who didn’t.  When I embarked on my teacher training, he gave me lots of advice. One of the best being ‘Don’t ask your students to do anything if you don’t know why you’re asking’ And to this day and many to come, when I deliver training to new teachers this is my most important piece of advice, that and “a 5 minute detention has as much impact as a 30 minute one, so don’t punish yourself along with the child.” He had a gift with difficult students, some who I knew from school, who told me my dad was ‘alright.’ High praise from those who didn’t trust easily and so many other people had given up on.

He gave his love and time to his grandchildren, those near and my one, for the last few years very far away. A remembers fondly him allowing her to paint his nails and he kept it until it faded. Recently, with us being so far away I know he gave time after time, writing out emails and messages, so we could keep in touch. Carefully trying to type out memories and facts for her history project on her family.

He always gave me a realistic sense of just how strong we all are, through the hardest of times he reminded us, everything passes, the good and the bad. He gave me an inner strength and a true sense of hope and made me a true VHL warrior, as he was. He gave me permission to be frightened and at the same time he gave me the ability to face each scan, appointment and operation with the knowledge it would be ok.  

He gave anyone who needed it his time and his compassion. He was a good listener. No matter what, he was ready with support and love and never judgement. He took us as we were and loved us no matter what. J, mum and me have worked with so many disadvantaged and broken families over the years, we know the damage that can be done by lack of true love, but without question our dad loved us unconditionally and we fiercely love him back.

Thank you dad for all you gave us, I could have written pages more but mum said the service was only 45 minutes and it could be all from me.

 

his body

A VHL warrior the whole way and beyond. His body won't immediately save someone else. Not straight away, but maybe one day and maybe me. It's on its way to a research hospital and they were, so I'm told, respectfully delighted. The oldest VHL one they have had.

Good old dad. 

Larkin

 Today I am waiting to see if my dad dies. I think many people do this passively and I have for some years now. Today this waiting feels active, lively and very present. 

He didn't have a good night, my mum and sister were asked to consider if treatment should be withdrawn. he picked up, better blood pressure, better saturation, but not really awake. He has been close to the end before, once he in fact chose it and it didn't work. Since that time he has been quietly and doggedly determined to not let VHL win.  My sense was that he has insisted that his life, despite what others may think has value and he wants to live. There is a bitterness to this, an obvious frustration at the medical possibilities or, more accurately the lack of them. 

While I wait I guess,  I plan, I wonder, I think through the ways this might all go. It wouldn't surprise me if he fully pulls through, gets as better as is currently possible and gets back home. It wouldn't be a shock if he survives again, another almost medical miracle. 

but

Is today the day my dad dies and VHL claims his body more than it already has? No, because he never really let it win, he never allowed it to take some true parts of who he is.  And part of me feels a quiet sense that it won't be today, or this week, that his story isn't over. 

May be

There are always maybes. 

Right now, maybe he'll be ok

Maybe it's a blood clot, maybe not.

Maybe