Belonging

I think it's part of the human condition to want to belong. An intriguing side effect of my step into going public, slowly, cautiously into a place where I can share I feel like this might be a place I belong.

I'm not a doctor but I suddenly feel I'm not a fake. I'm declaring my status as a patient. A front facing user. This is my experience. I'm not new to this, I'm not in training. This is my area of expertise.
I belong.
Here

a story about one of my hemangioblastomas

The last blog post I made before being admitted to hospital for the hemangioblastoma was about 3 days before I went in.

I got through that day, a sad and horrible day. I had told so many people about her death, a student, and then I tried to carry on.
My last day at school - My boss was out and I had sat on a chair for the entire lesson. My colleague knew my face was 'not right' and kindly offered to do my lunch duty.
I called my GP to chase the information about the cyber knife.
I cried and I knew I had to go home, I hadn't felt that tried in so very long.
It always felt better if I could just lie down.

Even today, if I feel especially tired I worry something is going on in my brain.

I still marvel at just how I got out of my friend's car and had my bloods done, how the next day I even made it as far as the end of my road and I sometimes drift back to those hideous moments when I was unable to move. My daughter dressing me, helping me clean my teeth, how I asked for my husband to come back from his business trip early and, thank god, he did.

And then in the first hospital. I had been lying down for a long time, still and rested. I felt like I'd made such a fuss, no cortisone crisis, not feeling that bad. There are moments when you recognise the brilliance and simplicity of the medical process. It was my blood pressure that gave it away, you are not fine.
A crash from lying to standing, the nurse, reaching out his arm to hold me, fearful I was about to faint.

My hospital having me in, the sedatives to help me move from bed to bed, I could still walk a bit then.

The worst of all moments, the unknown and the real crash, my body began to go into shock, the blood retreating into my internal organs, the sudden and complete spread of pins and needles and the loss of sight. The panic as I couldn't find the alarm
HELP HELP ME HELP
The bumbling Dr who couldn't find a vein - no wonder my blood had been sucked towards my heart.

I begged to be catheterised, the idea of getting up again too much to take, the need of a bed pan and the change of myself.

The MRI - the fear and my genetic nurse, a woman who made me feel less alone and knew she had to call my mum.
36 years old and I needed my mum.

Then a wait and another transfer, just a few miles away but I didn't know then how long I was going to wait.

I remember my mum's fierce instance that even touching the edge of the bed was horrible for me. And despite having never experienced it themselves my mum and husband knew -this isn't like her.

3 weeks of progressively unbearable dizziness. But bare it I had to, no choice.

Despair.

Infections, bloods, a drip, a mouthful of food and only for my daughter, I kept going for her.
I didn't want to be alive even though I didn't want to die.

It was the hardest time in so many ways.

It ended.

The NHS was there for me. And I mean the people and the experience, equipment and care.

I am worried for  myself not having it in the future and I worry for everyone else who might need it. And my heart pounds at the injustice of life that some people don't even get insurance.

I've gone on Twitter

I have a short bucket list these days, I have achieved many of my ambitions and there isn't much left that I think I have a huge amount of control over.
One thing though, is to be published.
I've written a few things and I hope one day something is officially published.
So with one of my favourite people, over a bottle of -her Prosecco - me Corona talked about it. She, you see, is a proper author. I'm very excited by that.

She suggested some things, and one was this, this blog. To send it - to get more followers and at the time that seemed right, felt like the right idea, given where I was and where I've been.
Back home, in the cold weather and the reality of everyday life I am doubting if that's a good idea. I've looked, there are so many stories, so many voices. Why would mine be useful?

I'm linking up some ideas and the Twitter account @OfDefect is live... and I've connected with a couple of people, which is rather lovely, but I don't know if this is the way I tick that item off my list

I might wait.

The honour

This week I've been blessed to be back in the arms of my husband and being able to hold my baby girl, who is almost as tall as me now.

And I've had the honour of being a teacher. To get back in the classroom and enjoy that part of my life too.

I've been honoured to have a place at a table at the yr 11 prom and see the pride and joy they have in themselves. I know
My part in that has been small but what a pleasure to know I can continue to do that for the next generation.

Here I know I'm a guest, and I've been honoured to meet new people and be welcomed and loved. To be made to feel I belong.

Honoured too, to be invited to dance and to do it. To laugh and talk and dream and plan.

Returning

Returning sooner than expected and it has been a beautiful thing.

I haven't seen or felt a single moment of resentment or doubt, just pleasure and joy, genuine happiness that all turned out to be good. This time.

I returned before expected once before, also with a kidney cancer related issue. This was the one that got to me the most. It was in the year I had intended to attempt to become a member of SLT somewhere, anywhere, well not quite I had some parameters but it was the right time, I was Head of Year for Year 11, they would be on their way into 6th form or other parts of the world and I didn't fancy starting again with another year group. I wanted the step up, I knew I was ready and then at the same time I couldn't move forward with the knowledge that cancer was in me. It was my first experience of cancer, my first sense that the cells in my body were not just in an awkward place but that they might try and eat up my good cells, that they wanted to spread that they were truly an enemy within. Torn by this knowledge and beginning to break from it I had explained I wanted it all taken out.
Get it out.

And then I had my consultation with the surgeon, and his flippancy didn't change the reality that this was major surgery and not an easy one at that. The location, right near the renal artery made this very serious. I picked a date that had minimum impact on work on my students and I signed the triplicate form anyway. I had no choice.

I sat having some bloods done, and a well meaning nurse said something about preparing for the worst. I was shaken and afraid and suddenly felt my time was genuinely limited.

As is my way, I began to prepare and ignore all at the same time. I applied for jobs regardless and wrote a diary to my daughter. I checked my will and agreed to events post surgery, I did both but I was convinced that the date given in December would be my last.

I wasn't myself, those of you who know my husband will know I can't have been, he was worried about me, he showed it and said it. I was worried about me. I set my cover and

I arrived, gown on, cannula in arrow and R written on my side, the white compression stockings adorned my feet, the fog thick outside and the hospital lights harsh. I had said my goodbyes, written my  final letters to my nearest and dearest and given important instructions, most important of all, don't let her forget me.

And then, we can't do it today, there are no beds in HDU, you can't go straight to a ward, we'll re-arrange. The fog of that cold December morning had hidden other peoples fate from view and the emergency surgery list had increased. Someone else had taken my place and I was so relieved. I hope they survived the day and I knew now I would.

I dressed and numbly told my mum, sister and husband and we went to Sainsbury's cafe for a cup of tea. I'd been nil by mouth so I had food too. And as the realisation cleared like the fog outside I found myself with a life that needed living. Once more I'd been given it all back.

I took a couple of days off and then I went back to work. That time the relief for me was far greater than those I returned to, and three months later I had the surgery I knew I needed, but this time I knew I wouldn't die.

My return this week, to my community has been better in many ways, I find myself able to enjoy it more. I know that I will need the current cancer sorted at some point but it feels a long way off and this year I don't need to make any steps up a career ladder, I'm where I want to be. I'm content and happy and I feel so lucky and blessed to know that is true. I've returned and I've found I'm accepted and loved, more than I could have hoped for. Perhaps that what peace feels like. I like it.

The thing with wheelchairs

It's so easy to forget the mountains he climbs each day. As an abled bodied person most people don't see them.

Today, in the rain we set off for the drs, I forgot to get his hat and we got wet.

We move slowly, he is a polite pavement user, he always, always stops for others to pass. He can't manage the chair well, his fine motor skills are as effected as his legs. 

I was reminded of the frustrations of where the dropped curb is, wheely bins left out, dips and cracks in pavements. Simply crossing the road at a speed that he feels comfortable with is hard and at times I felt a bit dangerous, I was there to stop traffic, those is cars going significantly faster than the 30 or 20 miles indicated. On our journey which was less than a third of a mile, took us well over 20 minutes and when the path narrowed I stood in the road. I was glad the long cars that often stick into to road from a drive didn't get scratched, and I watched in admiration as he carefully, patiently navigated each part. I felt empathy and pride. 

I wanted to put something on Facebook about being more considerate of where you put your bins. I didn't. 

Then later in the day I stepped backwards onto a pavement and was nearly mown down by someone on a mobility scooter, obviously happy with their fine motor skills and not so worried about the 20 mile an hour speed limit on the road. 

The room of my childhood

We moved to this house when I was about 8 I think, this wasn't my room straight away, my big sister had to move out before I got it.
But this room holds so many memories, so much joy and pain and fear and anxiety and some love.
It's been painted and changed at least 4 times since I left it and yet I know behind the paint on the wall that now stands on front of me, mine, my sister and my brother's names remain. I don't fully remember us doing it, stood together paint brushes in hand and painting our names there for what we assumed would be eternity. It didn't cross our minds, then, that we wouldn't have all our lives to be reunited in this house, in this room. 

His room is still filled with parts of his life, as short as it was. Certificates, his art work, his stuff, even his old TV. 

In this room, my room there is little left of me. It's the guest room now. I have a draw where I keep my things. However the view from my windows is subtly different but less changes than the items in the room. The most striking change is the appearance of the extension built for my dad. To accommodate his growing needs. IT sits heavily below the window and blocks part of the view.
He hasn't seen this room for about a decade, unable to navigate the steep stairs.
I'm here because of VHL. I'd still be with my little family, getting my baby girl ready for bed and enjoying an hour or two of us time with my ever reliable and ever rational husband.
I'd probably not be thinking of all this and the devastation the disease has imposed on father's body and his relationship with my mum. I'd probably be able to forget his daily physical struggle to do the simplest of things and the anger in my mum's eyes as she tries to be patient and not snap.
I'd definitely not be thinking of the steady stream of daily carers who come to do some of the difficult jobs. Their clocking in and out, the ease and routine they have in my childhood home. The intimacy they develop with my father and the distance my mum puts in-between her and them.
The carefully constructed barriers she places so that it can still feel like her home.
I'd be free of all that and if it weren't for VHL so would they.