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.

Just a tiny drop of milk

I've been making my dad tea for over 30 years.
He knows I know how he takes it.
Today I asked if he wanted a cup of tea and he said 'yes please, with a tiny drop off milk.'
I smiled.
I put the kettle on and thought about our relationship. It's good to see him but hard to understand him.
I then realised I knew about the milk but wasn't sure what type of cup I should use.
That had changed, maybe... It hadn't.

On a day I feel blessed I thought this a true blessing. Being able to make my dad a cup of tea the way he likes it.

He's off to a music festival and last week he went on a trip up a very large hill.

He is back to inspiring me.

And I'm surrounded by blessings.
A cheese and ham roll
Fresh milk
My bank card working instantly
The London transport system
Pate
Crumpets
A really good washing machine
Central heating
Consistent internet connection
The NHS
Next day delivery
Take away
A trip to the cinema

My mum
My dad
My sister
Her children
My childhood home

Laughing until my face hurts with my family

My health

The sun

Contact with my other home

The love and care and support from so many people

Their positively, compassion and prayers.

I have three homes.

I am blessed.

Tales of the Unexpected

I was not ready!

My head is still spinning but I have a stay of execution. I could bore you with the explanation but I'm exhausted from explaining. The long and short of it is no surgery, for now and maybe now for a long time.

If I die before I wake

Now I lay me down to sleep.
I pray the Lord my soul to keep.
If I should die before I wake,
I pray to God my soul to take.
If I should live for other days,
I pray the Lord to guide my ways.

Father, unto thee I pray,
Thou hast guarded me all day;
Safe I am while in thy sight,
Safely let me sleep tonight.
Bless my friends, the whole world bless;
Help me to learn helpfulness;
Keep me ever in thy sight;
So to all I say good night.

Doing some prep...

I'm off to he VHL clinic today. I'm preparing for it in the way I've done for years. Reminding myself of the names of staff I'm likely to meet and writing out the questions I want to ask, the things I need to check and information I think I should impart.
I'm writing it all down in my little book that I've used for years too.
I've gone over old medical letters, checked my facts and dates, ensured I know what my ideal scenario would be given the situation I don't want.
I'm ready.
And, as with each year I will be ready to hear whatever news and be ready to cry. I have tissues.
I'm ready to leave the room and then think of the questions I wish I'd asked. I'm ready to make the polite jokes, do the polite effort of saying how my dad is and despite the fact it is far from fine, I'm ready to say, he's fine. I'm ready to add to the list and I'm ready to find out, have number 14 grown, is number 12 the same and this time I'm ready for them to tell me about my kidney cancer.
Will I get to keep living this life I've carefully protected and clung onto?
I'll find out soon
Well, I'll find out where I am no, because with VHL one day is just that and who knows what tomorrow will look like.
And that's true for every one on this planet, but people like me know it.
Really know it.
and
I
am
ready

A time to cry

On a day I've held back tears, not because there is shame in them, but because I needed to keep stepping forward, I needed to feel I could face the next few minutes, I'm struck by Theresa May's final show of tears.
I wonder if she knows how empty they look.

I'm one of them

Today I said this

Speech wise, every moment of life is worth forgetting and remembering. You get to choose and with each step you take you keep deciding.

It just came out of me and it made me smile... The ability to be 'profound'
Funny really

Doing what you love

Last week we hosted a 'I'm going away for a bit but I'll be back' party
It summed up so much about what I love in life.
People.
I love connecting people.
When I see people I love find the parts of others that I knew they would love... That's satisfaction. No jealously. That's not me.
I see the joy of connection and commonality.

How many times can you die?

I sent an email yesterday to my work colleagues. I was my usual matter of fact, this is what this is, self.
What occurred to me, was the frequency of this notification. My sense of fraud.
The jeopardy.
She won't die.

But who has to do this?
Who lives this... This cycle, this endless expectation of pain and discomfort.
Even if I'm as fine as I am now.
How many times can I be close to death?
But never there, never enough.
I've read about convicts on death row. The inhuman treatment they receive. The mental torture of being aware you're going to die but it keeps being delayed.
Today, I feel little that's what VHL does.
Today I'm getting ready for this, tomorrow I might find out I'm properly fucked.

How many times can you know you're going to die?

Mortality and immortality

Once you really know one you can't forgive the other.
I've been acutely aware of my mortality for most of my life, which seems to breed a sense of immortality.
How do I keep sane?
Worry.
Over think.
Stress.
About things that matter but not as much as my mortality.
Or as much, because I give them that value.
Working with children helps because, as Whitney Houston said... They are our future.

Whisper 'I love you'

I've always said it, often and to all sorts of people. I give my love freely and it means many things.
I know that, as a child, I was able to say it so often because I was secure in its place and in its reciprocation. My parents would joke with me about the frequency of my declaration.
As I grew older and threw the word around, I hoped it would serve me just as well. 

Not always. 

It was sometimes misplaced and remained over used.

I grew to be more cautious with it, with men, with those that found it a trap. I felt the certainly of my feelings but didn't get it back. With my choice of husband or still felt that I gave and gave and he cautiously returned my voice. So often I wondered if he did, love me. He did and does.
For a time I stopped saying it. I couldn't do it with the honesty I once had, with the naive abandon that I took for granted.
Today, a life time on I whispered it softly, knowing I meant it. Knowing its true complexity and hoping the reply was  heart felt as my journey to it had been.
I will always love easily.

I will say it often and to many people.

Today I am happy to be in a place that accepts it and me for the time before and the time to come.

Luck, choice, hard work

This term has been hard.
There has been so much variety and I have seen an unacceptable level of poverty and privilege.
Here I am.
The holidays loom and I don't quite know what will keep me busy.

Keep my mind off it all.

Touching death

I cried in the bath yesterday. I cried because I know I'm going to miss part of my daughter's life.
Tonight I cried because I felt like I'm going to miss more of it.
I have to realise I can't be there always.
Her dad will be fantastic
Her dad will hold her and love her
And he'll tell her when she needs telling
I'm so scared I'll miss it all

Knowing tragedy can strike

My newest friend and I have something in common. Many things.
But we know tragedy can pop up regardless of the day, joy or season.
My mother would often bemoan the grokkles that visited our home town of a summer.
They think they can't die on holiday... The anecdote continued, but the point was, you don't expect to die on holiday.
My new friend and I know, that's not true.

In fact, we often leap to the tragedy in our minds. We see the terror and grief that awaits, just behind the casual smile of a swimming pool or car journey home. We understand we have no control over the fateful day we may say, I knew something was wrong... We'll say it because we feel the potential daily. One doesn't experience inexplicable grief at a young age and then go back to blissful ignorance.

No, we do our best to ignore the continual threat of the unexpected and, in our eyes, likely repetition of pain.

So we acknowledge it, push it aside and great it, with a great deal of respect. And then, we do our best to ignore it once again. But only because this time, happily, we were wrong.

Ex pat

Being an ex pat is the most ridiculous thing to be.
We're immigrants.
We have the extraordinary experience of being here.
I'm not sure how we get to term it differently.
Humph

The push and pull

I want her near me every second of the day.
I want her safe in my arms, a place she can't stay
I want her to know my love is in her skin
To keep it there I must being to let go

Letters to my dad

something unexpected and rather wonderful has begun to happen. My dad, when he has the physical and emotional energy, has started up a real conversation with me via email. 

He says things and I reply. 

I love it, I love him asking about my thoughts. I love hearing his. I was reminded the other day how when he and my mum had spilt up and we would have an afternoon together, how hard it was to talk, let alone communicate. That's how I remember we started to talk about and cook food. Something we both enjoyed and it gave us a way of being together. 

I hope this conversation continues, I can love this father and eagerly await his responses, questions and thoughts. 

This is my most recent reply... you'll have to guess what he said because that's between him and me. 

I don't go anymore, mainly because I think organised religion isn't for me.  I think I do have faith, or perhaps hope. I hope there is another step or stage, I really hope it's got some things that are better than this one. And I suppose it is more wishful thinking. I feel the church gave me some really positive things but mainly a bad thing, guilt and with that a level of insecurity that is very hard to shift. I suffer from very low self esteem that isn't something I carry openly, I come across as very sure and confident, but I sometimes wake up with an almost crippling sense of shame and self doubt. Then I have a word with myself, and try and get on with the day. 

Over the years I learnt to protect myself  from myself. the psychotherapy really helped with that. I surround myself with people who get me and love me unconditionally. I wish my sister was one of them but she confirmed at my birthday party that she doesn't think very highly of me. 

So  - religion makes it too hard to be positive and I don't think a the god I was told about exists but I want to believe there is a spiritual element to us and this life and then maybe another one. 

Sad and angry

I've been both this week.
News that a friend was suddenly dead and by suicide was hard to take.
I would love to be at the funeral as I know thev love that works pour out from everyone.
Her life had had so many difficulties, and some of them so close to my own experiences that she just got me.
We meet via a choir and when the choir spilt we went to different ones, but not once did that mean we didn't respect each other.
We became friends because she was open to me, open to learning about me and I her. That's what friends are I guess.
She knew what it felt like to have a body that fucks you over.
She knew what it felt like to be in hospital while you're children observe all that you're going through.
She knew the value of psychotherapy.
She knew what being betrayed felt like.

She also knew how to fight on. I can only guess that the fight became too much or that she was taken over by the pain and fear of depression.

I'm so sad she couldn't stay with us. I'm angry that she's gone because I don't want her to be. I want to hike up that bloody hill and see her next time I'm home. You take it for granted people will be there. And these moments remind you that won't always be true.

So I've been angry. The universe has pissed me off.