Another appointment

They roll around, appointments but this time my anxiety levels are peaking.
This time my spine, this time I'm nervous of the hidden.
I don't want more surgery, I don't want to take more steroids. I want a normal body.

When are you fully recovered?

This week has been a test for me in terms of my inner strength and ability to cope. And today I'm knackered... Do I suck it up and go to the theatre with my father in law and daughter or do I listen to my body and sleep.
I can't decide.
It was full on at work, I had to do something that wasn't nice. I had to tell people that might lose their jobs.
I'm so very tired.

Decided

I had an email today saying that although I had leadership potential I'm not on the course.
I was relieved.
I was hoping that would be the case as this holiday I've spent more time thinking about what's important to me and my family.
Having that time showed me one thing was time.
The other reason I'm glad is that quite a few people I respect, do not respect the organisation. One, very newly made influence, my coach almost told me she had no respect for them at all.

I haven't had any feedback. I suspect it's my lack of ability in the 3 online, timed tests. These were types of IQ tests. I nearly always fail those.

It could be that my style, my philosophy of education came over too strongly and I'm not their type.

Could be I'd only just got back after sick leave and they could sense how warn out was.

Maybe a combination.

But whatever the reasons I am glad. Now I get some time.

Let the fates decide

It's holiday time... I'm on holiday at the in-laws.
All very pleasant and relaxing.
I'm happy not to be at work and to be healthy at the same time. It feels like a long time since I've been well and now I'm here I'm having a bit of a re-think about my next few years.
VHL put me into a place where I was clear I didn't want to miss any life. My brother dying and his eulogy made me very determined to ensure I lived my life and didn't turn any opportunities down. Mostly that's always worked for me but lately I'm wondering if I've got the balance wrong.
That's probably got more to do with other life experiences and a freakish cyst around my brain tumour. I've said it before but I lay there, day after day, suffering in ways I can't describe and I didn't feel I regretted any choices I'd made.
I wasn't proud of everything I'd done, but I didn't regret it.
After being back at work and being back to my normal self I've been struck by how much I've let work consume me. People have seen my stress. I wonder if much of it is because they expect me not to be coping, that it is natural to be stressed. But truth be told I feel like there are other things I enjoy that I'm not getting the chance to do.
I love my job, I want to love it like I used to. That might mean taking a step back.
I'll let the fates decide... If I get on the course I'll do it. If I don't I'm not going to worry about it.
If I don't though, I'm going to have to get better at saying no.
If I'm guilty of being weak, then it's at saying no. I'm full.
Life work balance.

I am drunk

Tonight I went out with my skating peeps. I considered friends as a label but it isn't quite right.
It's tomorrow already and I'm tipsy to say I  the least.
I nearly got on the wrong bus... I am clearly enough aware of my necessary journey to not do that.
What made the night VHL related was the number of times I and others mentioned my brain tumour. It felt partially heroic.

I was the only one (except a disgraced) from my original fresh meat. 
I survived.
I did it.
I won.

Breaks my heart

I'm home for Easter, just a couple of days. We had lunch today, the youngest of the family, my husband and I put the food out. So far so ordinary. My dad wheeled to the table and a plastic apron placed around him.
I served him food, cut up the bits that weren't already bite sized and sat next to him. A small gesture of understanding but I'd made sure today my mum wasn't sat next to him. I did the subtle catching of the fallen large bits of food. Then at dessert he couldn't feed himself. I helped, I carefully put the spoon in his mouth and helped him finish his meal.
He then had his coffee, then he went to the loo, all on his own. This time.

My once strong and independent father tries now to be independent, just a bit. 

And each time it breaks my heart, I see my mother's face look exacerbated by the crashes into walls and dents in the furniture. I see how trapped they both are and I want to free them both. But I also don't want to be here often. I'm weak that way.
I see it as one of my possible futures. I notice my arm all the more, I think to the day I need to be fed and use a chair and wear a nappy. I think of my husband feeling trapped by me and wishing he'd taken a different path. Who knows, he might still. There's time!

Feeling a bit sick

I don't feel 100% today, end of term and a few too many the night before last, my little one has had a fever. So this feeling is completely normal but I'm having a mild freak out. I feel dizzy, it's a feeling I now associate with the month of horror, the time in my life when I was so completely afraid that was all I was ever going to feel again.

I've done a whole term at school, cried, been near to tears a great deal and who could blame me? I don't know how I feel about everything but I do know that, not for the first time, the fear of VHL is getting in my way more than I'd like it to.

"amazed at how well you've dealt with it" I know loads of people think I'm great because I've bounced back. "I have nothing but admiration for you on how you've come back" and the more honest one "I'm not sure you're coping" even though I got in every single day and haven't quite dropped any balls just not been juggling them with style and grace.

They feel sorry for me don't they... that's the truth and so in a way I'm never going to know what a none VHL me is capable of. And as there will never be a non-VHL version of me perhaps I just have to get used to that. Grrr. I wish I knew if anything I do is good enough, I know I'm not good enough for me. There's the real pressure.

So it's Easter Saturday, I've sent some bits and pieces for work already and done some rehearsal for a play I'm in tonight, I've watched TV, I've had a long bath, I've loved my daughter, I've been made food my my husband and now I'm blogging. I'm trying to clear my head. It isn't working yet. I'm still feeling very unsettled and I think  it might be because my husband comes home with me tomorrow and I'm nervous. For my life to go back to the pre-brain tumour normal, that has to work.

On top of all of this the bugging sensation that some people are always right and in my sense of urgency to move on with life perhaps I'm in too much of a hurry. Give a girl a deadline of 52 and then scare the shit out of her at 37 and give her constant reminders of the limitations of the NHS and you will end up making her move too fast, do too much and live a life that would have been different.
As clear as that is, and as much as that 'makes sense' to those not in the know, I know I bounce from tragedy to crisis to emergency to the hideous truth of everyday, I haven't got time to slow down and reflect and think and value me.

What do I actually want from life...

Time and a diary

I write a diary to my daughter. I started it when I was told I had kidney cancer and that the operation was a difficult one. A nurse suggested I prepare, just in case.
I survived that and the next operation too. I write to her about her, how she is in my life and what we share.
I sometimes offer words of wisdom, but mostly I say how I feel and what we've been up to.
Recently the times in between writing it have become bigger, over a week, almost two. This isn't because I'm doing lots with her but that I'm busy with work, busy with things other than her.
I need to address that, I need to think about my family more and spend more b time making some memories.
She likes memories, she starts many a conversation with "do you remember when..." I dying know if that's normal for an eight year old but that's all life really is, making memories. Thing is, you have to do stuff to make them.
This Easter I intend to make a few fun, happy memories.

The difficult week

This week every year is hard, the hump in the road that I know I have to get over.
It was even harder this year, I woke up on the 15th knowing it already hurt. I warned a colleague and cried on way to work. I got through the first couple of hours. Then I cried again, I sucked it up and got through another 2 and then I couldn't quite do it. A word of kindness at just the wrong moment and I was gone and for the rest of the day the tears fell.
They fell while I did my job, only in the cover lesson did I just about hold on. I cried watching my daughter swim. I cried silently while we drove home. I cried while I cooked dinner. I cried answering emails, I cried myself to sleep.
I cried because I miss my brother so much, I cried because I was relieved, I was sad, I felt alone, I felt loved and rejected. I cried for all these reasons and some more besides.

I cried because I couldn't have what I wanted.

Grief took me over for that day, and I let it because I was allowed on that day.

I need another day where I'm allowed to do that. I may have to wait until next year now.

I thought I had a lot to say

Have I really been changed or am I simply already back as I have always been?
What makes me happy, should I be striving for that or are we all better off if we strive for a simple contentment. A friend.

I know my life hits some extremes for 'normal' people and I haven't chosen that but after all this time and all the stuff I am so stupidly used to it all, that an ordinary life feels so mundane.
I need to feel happy. Some days I do, some days I don't, I suspect that is what is normal.

I don't know if I'd be different if I didn't have VHL. Would you?

A different body

I've been back at work almost a whole half term.
My body is getting used to the stress and strain of the job again. Lots of walking, lots of getting up and down stairs and the roller coaster of a 'normal' school day.
I love it.
My bum is firmer, my legs are stronger and my tummy is getting just that little bit podgy again.

Who would be a parent

I refer you back to 'Be the Verse'
so painfully true.

It does me good in my role as a teacher to be on the other side, to sit in a  room and hear things about my child. It helps me remember when I have a child who needs help that the parents should know, have a right to know and maybe, just maybe know more than we do.

But yesterday it took me back to that level of vulnerability that I have been experiencing a lot of late. Today I'd bounced back. Yesterday the tears were just sitting there - ready and willing.

It isn't surprising though is it - a very good friend of mine mentioned recently that she knows people who are find with the mundane, but she knows I'm not. Not sure I've ever had the choice. And I don't choose this, much of this happens without my permission. There are days when I would happily stay in bed all day, stay on the sofa, days when I don't want to do anything at all but they are rare.

Most days I want to get up, be alive. Who doesn't want to be alive?

My daughter is anxious - she had nightmares ones that 'flood into her day' she has only told me about 1.
I see a child who worries in a normal way, I can't lie to her, I can't tell her I'm never going to die.

Are we getting back to normal?

yes

It's snowing

There is snow on the ground, I called for my daughter to come and see it, I still get excited at the first real snow of the year and so did she. Then we went back to the warmth of the front room, to watch TV. A peaceful Sunday morning. As it should be.
It has been anything but a peaceful week. I've been back at work doing normal hours, not as many as I usually do but I've lasted the whole week, not teaching too much yet but getting back into the swing. I love my job, the sheer variety of events in the space of one hour would have many a mind boggling. Friday was the highlight, I made mistakes and I didn't get everything done I wanted to but I came home feeling great, buzzing from the joy of a successful day. One where I had felt respected, needed and valued. As I say, I love my job.
My husband didn't seem to care, he was in a bad mood, he went out again - to a meeting, more work for him.
My daughter and I went to a restaurant and met my mum and sister. This is a highly unusual event, they live over a 2 hour drive away and this was happening because they had both been in the hospital with my dad, this week he had spinal surgery.

On Wednesday evening, after a day at work I came home, where my mum was still wondering if she should go into the hospital, still no news. We went in together, and after some questioning and realising he was still in theatre we decided to wait just 1 hour longer, check and see if he was out, and if he wasn't go home again. We went back and he was out, lying with all the wires and tubes and he was ventilated, they were breathing for him and he was being kept asleep. The memories of my brother in that position overlay my father as he lay, cold to the touch and still. My dad is rarely still. We both kissed him, gave his nurse some advice, including what to call him and found out they knew very little, they would only know if he was able to breath on his own when they took the tube out, only then too would they know if he could move his body.

We went home, got a taxi, sat holding hands in silence most of the way, unable to speak, unable to really comfort each other except for the fact of being together, which was important. At home my husband was doing chores, the cat shit chore to be precise. But even after that he didn't comfort me physically, I wondered why. I never ask. I went to bed early, knowing that in the morning we would find out and knowing I needed sleep.

Mum sat on my bed, asking if she should call, it was about 7:20am  - "yes." first attempt there was no answer, second gave us the news we wanted, we think we wanted. He was breathing on his own and could move "all" his legs. I was pleased, relieved, but I couldn't shake the image of him. I went to work. No one asked, to be fair not many people knew, but the ones that did, didn't ask. I felt let down, lonely and angry. Then my Head did, he asked, I faked the happy response everyone wants.

I carried on my day but I was over sensitive to criticism. Finally I was asked why I was in a funny mood. 'A difficult week' The penny dropped and at last someone who mattered gave me some much needed support. I gave them the honest response, not the one they wanted. I cried, I let some of the pain out. But I ran away from it. I didn't stay to be comforted properly. I have my reasons.

That evening I went to the hospital, took my daughter, saw my dad, alive and moving and grumpy. Phew.

Friday I was the happy I had faked to my Head the day before. Until after the meal.

At home my mum was in a very emotional place, after all she really had been through it, but from somewhere, and I still don't really understand what happened, what has always been a rather awkward relationship between, my husband and her, they had a - well not an argument. A thing, he lost his temper with her, she played the emotionally betrayed mother-in-law and my big sister ran away. I wasn't even in the room, returning to a silent husband, retreating sister and weeping mother.

In the middle I stayed, until he left the room and I talked my mum down from her emotional cliff edge. My sister returned, explained her perspective and we sat discussing this and everything and nothing. He sent a text the next morning to apologise to her, she sent a politicians apology in return and we currently live in a state of uneasy silence with neither of them having physically seen each other since. The two most unstable yet constant and consistent people in my life have returned to their homes and I've stayed here, not knowing what I really think or feel about any of it but happy to ponder it on the phone to a friend and text others of the saga. A good story to tell - not like I haven't got enough of those.

A blessing in all of this is just how oblivious my daughter is to it all.

Not sure I'll be spending much time with my mum and husband in the same room again. it's like a divorce!

It's all about me

What a week, much like others I have had but still I think remarkable. I went back to work and survived, but the bit that won't leave me this week is the conversation with my neurosurgeon.

The pins and needles in my arm are not about my brain but my spine.

Today, Sunday, my parents will arrive and then my father will go to Barts, again and then to The Royal, again and then, all being well to the operating theatre to have another spinal tumour removed.

You can see the remarkable connection.

He is going through this and I am thinking of me.

Phased return

Last time I went back to work after surgery it was quite straight forward, I'd only missed 3 weeks and my job was much more contained. I'd planned for my absence and so I knew what I was coming back to. I knew my colleagues well too and they knew me. It feels very different this time and although I want to go back, get back to normal, I've got the nerves of the first day with the added fear that I'm useless and no one likes me.

Extreme I know but I've changed and I don't know what my job might be and how much other people have done and if they even want me back. Crisis of confidence?

Phased too, slow, not right back in. That's why I'm sitting here and not actually at work yet, I'm going in later. This is because my energy levels are lower than before.

VHL gets in the way, this operation was unexpected and I couldn't plan for it, it's taken me by surprise and so are these feelings I'm having.

I hope it's better than I'm expecting and that there are some good old silver linings to this too. Perhaps I'll get some changes to my role that will work out well, perhaps my show of strength in the face of adversity will convince some people I'm not as bad as they thought I was. Perhaps.

Last Christmas I gave you my heart...

What a year, as always... many people write something in your Christmas card along the lines of have a great 2000 and, the next year hoping to be better than the last. They used to, quite a few of my family and friends gave up saying anything like that a long time ago. I only got one 'let's hope 2016 is better than 2015' And I do I really do, it was a shocker of a year and at times one of my happiest.
But Christmas, again one that could be the last, my dad again. Spinal surgery, again, risk of... the usual and the high risk.

I've had one last Christmas in 1999 when I had my brain surgery booked for January 2000. The bringing in of the millennium was the grimmest I'd ever faced. My sister and I sat on the sofa in my mum and dad's front room and tried not to say the things we were thinking. I said after the successful surgery that I wouldn't do that again, last Christmases are rubbish, everyone tries too hard, they are tense and it just makes you sad. I wish I'd been there (at the meeting) to tell them that when they were given the possibility of an operation date of 23rd December, they went for 13th January.

This Christmas proved to be all of the parts I hoped it wouldn't be. Of course the bits I did want were there too -  Initially I had that brilliant feeling of a proper pile of presents under the tree, I had two stockings! My absolute favourite bit. My daughter had a great time and I went to church and sang the descant to O Come all ye faithful. We ate too much food and I was recovered enough to drink and get a bit tipsy. But along with those bits, there was a huge amount of tension, short sharp responses, snapping and criticism galore. I was no longer the flavour of the month, I could do no right and my sister seemed to fluctuate between joy and irritation. There was of course moments of fun and joy, laughter but t didn't last long and when you can't even lay a table without getting something wrong the days are like walking on egg shells. Who'd have thought that less than two months ago I was a darling daughter, incapacitated and in fear of what miserable life might await me. My mother holding vigil at my bedside. Now I am the same old pain in the arse I was before.

My mother is always one for the drama and looks for the absolute worst possible outcome. It comes in handy sometimes, when I need to feel miserable, when I need a good cry. Why is this relevant? Well because now she doesn't know what the worst or best could possibly be, there are no good outcomes for my dad any more. The best is simply that things aren't more shit! And this is what partly made this last Christmas so miserable, so mixed so odd and so oddly familiar.

Counting blessings again

I'm crying, I feel very low and I have some minor silly things that are of little consequence running over and over in my mind. I can't shake it.;
My hormones are rather fucked I think, I'm tired and I feel lonely.
I was dreading a night out last night, with work friends because I didn't know what to expect, how I would feel and it was good in the end. And most of today I felt ok too but it's hard not being well.
My dad never complains, never, well not in my earshot. He doesn't moan and apparently neither do I. A few people have pointed this out to me recently, I do!
I've made steps, I've driven, been into work twice, travelled on a bus and had a drink of the alcoholic variety. Progress right? So suddenly I feel like shit and I went and sat in a dark room and cried and then found someone to hug and thought of the things I should be grateful for.
My daughter
My amazing friends
Having a family
My home
A secure job - even if I don't feel welcome - and why is that well I think my boss might be very good at drawing out my anxiety. You just don't always need to tell someone they are disliked, or not doing something 100% perfectly, because I'll admit it I'm playing at being ok, that awful phrase, fake it until you make it. I'm vulnerable and I'm trying to get back.
The CBT didn't work, there was nothing there I hadn't already thought of or tried but, as we now know, my brain wasn't right and I don't think my hormones were ok, I've certainly slept better since the tumour and cyst were removed.
I'm not officially back at work, right now, very unusually for me I never want to go back.Right now I want to curl up and stay away from almost everything and I know there are only a few things that have a chance of making me feel better, this is one of them, have a good cry and count my blessings

I'm not poor - in fact we are in a good financial position -
I don't live in a war zone or under a dictatorship
I don't feel like I did in November - but I'm terrified of something similar happening again.
I'm loved and valued by others
I'm not bad looking and I don't look all of my years, considering how physically and emotionally hard those have been that's good. I need to put on weight.

One of the toasts last night, said just the once but meant a lot to me was along the lines of, to me not being dead. And I'm not dead, possibly a little brain damaged, maybe permanently but not enough to stop me, not completely. A very good friend came to see me the other day and we talked, she let me talk lots and lots but it was so helpful to hear her tell me that getting on with my life was normal, right and ok. This is hard and right now, no matter how much I try I don't feel like I am coping. I'm not. Perhaps it's not even VHL, perhaps it's other things, things I also have no control over.

That bucket list might need a review - I need something to aim for and not just getting back to normal.

Perhaps what has brought all this on is the volume of TV I've been watching, the banality of human life and the averageness of life, I get excitement but does it have to be related to medical crisis and general - you can't have that.

Where am I now?

The recovery feels slow, still.

I thought I had a lot to say today but now I've started to write I've lost the inspiration.
maybe later.

A lot of time on my hands

I am looking forward to going back to work, 4 weeks since surgery and feels time to go back, I need to take my time as I know I want to rush back. I shouldn't.
I'm well enough to be quite bored  until days like today and then it hurts.

But in more interesting news, it has occurred that while I'm satisfied with my lot, even content, happy and have a plan, my husband might not be and perhaps I need to consider that.

I don't want him to look back and regret his life, he doesn't seem happy to me, and it seems he wants to travel.
So we need to consider it.
I don't want to really, but it's not like it would ruin my life.

I'm not sure what we'll do, will the little one do it, want to do it?

I need to not be selfish, it will be a while to organise it. A bit of me thinks, maybe we might not all go!

Stiff neck

I look back a week and I know I must be getting better,
goals reached

• toilet on my own
• dressed myself
• bath
• got out of hospital
• climbed the stairs
• ate food at a table
• proper shower
• emptied dishwasher 
• walked my daughter to school
• cooked
• dropped fentinayl (don't know how to spell it)
• put Christmas tree up 

next steps - 

• shops
• drive car
• walk to school
• hair cut
• tidy house
• get off the drugs!

then - get back to work, begin to feel like I'm really me.