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. 

counting your blessings

I'm alive, a good place to start. I'm able to take and pick up my daughter from school. My work are being really supportive and I don't feel pressure to return too soon.
I am getting better, slowly...
My friends have proved to be wonderful, caring and positive and just amazing, I feel loved and valued by them,the real friends are there when you need them, the people in my life are good people.
I know myself in a way I didn't before which is actually a mixed blessing because I know some things I want but can't have. That's hurting.

I should remember that recovery takes longer than you think it should
I still feel quite sick.
My body isn't mine.

I can't process it all yet, I don't know who to talk to. I don't know who'll listen well,  I am self indulgent at the best of times but I do need to talk this one through and I don't know who'll listen, well. Who the hell would want to? I feel changed and I don't know what the consequences of that are.

Who can I be honest with? Who can listen?

getting better

Today I feel largely frustrated that I'm not yet myself. I feel sick and my head still hurts and I'm wobbly and weak and my hair looks rubbish.
I have to be careful on days like today because I know they can lead me down a dark path. I am strong, I can overcome this all, I can get used to almost anything, I am strong.
But allow me to indulge myself, what if I'm not? What if  I won't ever be the person I was before, experiences do change you and this felt big, this has changed me. I don't feel like I'm ever going to get better, so much feels like my body doesn't belong to me and it doesn't know how to come back. I feel quite lost in my fear of not gaining back control.

headache
feeling sick
no appetite
wobbly
balance off
arm tingly (left)
eye feel odd
general weakness
shaking

and yet so much better than before the op, they where hellish days, each day more unbearable than the last, I couldn't even feel bored because the unpleasantness of it all so so extreme.
Count your blessings...

I'm trying to.

survivor?

It has been 3 weeks since my surgery and I feel rather disappointed that I don't feel better. I expect a lot of myself.

None of this has been nice, all of it something to get through but I have no choice. One thing is for sure I am living my life in a way I want to as lying there, for almost a month and I don't regret very much and the things I do regret weren't really things I actually had any control over.
I want to get back to that life, I don't want this one,

I should process this all but right now I am indulging myself in TV and friends visiting. I'm weak physically but proven to be strong mentally.

In hospital

Turns out that I felt rotten for VHL related issues as well as others. I'm typing on my phone from HDU as 3 days ago I had brain surgery. I'll no doubt say more on the topic anon.

A sad and hard day

One of our students died yesterday, she had ongoing health issues but none that should have caused her death.

Today was hard and exhausting, and my life experiences made me deal with it well enough, as well as anyone could expect.

I've got a pounding headache now and I think I'll get an early night.
I came home and saw my lovely little family cooking together, they were making lasagne and when I held them both close, they stood with me, holding me while I finally cried. I'd been holding it in all day, being there  for others, trying to make sure we were doing the right things as a school.

In amongst all this we had several other horrible situations, calls to the police and social services and student kicking off. They day went by so quickly, so sadly.

'Be the Verse' Philip Larkin

http://allpoetry.com/This-Be-The-Verse

This poem was introduced to me by my big brother. I thought him so important and clever even before he read this to me. My big brother was my hero for a time. I didn't see the many layers of relevance in this poem at the time but agreed with the sentiment and was, of course, simply impressed that an old man who was a librarian, could use the f word and have it published.

Not long ago I sent the link to a friend I was becoming very close to, I pointed out that as parents it is inevitable that we are going to fuck our little ones up, we should embrace it and just try to love them as much as we can, give them the resilience to cope with it, regardless.

The layers of this poem go into my genes of course, my dad fucked me up, his mum him, who knows if she was the first... and despite not passing the literal gene onto my daughter, she still has to live with the effects.

A couple of weeks ago her school began to worry about her and suggested a form of therapeutic play, we, my logical and non-worrying husband and I discussed it.We talked about the idea of making too much of it all. She been seeking out comfort, been crying, getting worried about my brain. Worried that my whole brain would get frozen, that I had wanted to spend a special day with her because I was going to die, because...
At home she seems very content and happy, she doesn't seem to worry. But her little life has been packed full of hospital visits, knowledge of test results, disability and just recently I think the fact that her best friends aunty died, showed her the pain of grief in a way she just can't articulate.

And she must sense my tension, my worry, my own fear because as much as I try to hide it from her, as much as I try to be 'normal' I'm not. and sometimes I'm not very good at that anyway.

So I've fucked her up already.

If you ever read this baby girl, know I love you and your parents fucking you up is inevitable and you'll do the same for your children one day (if you have them) and just as my mum is very proud of me despite my many faults, mistakes and fuck ups, I too will always be looking for the things I can feel proud of, the things I will love about you because while we have the potential to do so many ruinous things in our lives, actually when you are a normal parent, a good parent, that's what you do. Love unconditionally.

Am I strong?

"You're so strong"
"You're one of the strongest people I know"
"I don't know how you do it."
and less complimentary versions
"Heart of stone"
"Ice queen"
"psychopath"

And yet when I cry, when I look weak, they don't like it. By 'they' I mean those that think they are close to me but find the truth of it all very uncomfortable. I suspect I remind them of their own weakness and mortality. They like it when I cope, when I am strong because it eases their own fear.

I don't feel strong, I haven't felt physically strong for quite some time. I really don't like it. But emotionally I carry on. But I am not strong, I'm just good at looking like I am. Perhaps that's the same thing.

Still waiting

Ah, it burns.
So much waiting, this is also part of the curse of VHL. There are so many things that VHL takes from us and our families. It takes my body away from me, it takes my peace of mind, it takes my ability to plan, it takes little pieces of my relationships too. It took my brother completely and is stealing most of my father. And now? It's nearly taken me.

I wonder if anyone can ever really know what it feels like. The fear and the pain, the frustration and anguish. All words that don't sum it up, don't come close. I had some almost blissful years, where I didn't worry, well not much and not as much as now.

I don't know what to do for the best, I don't remember how it felt, except that it was different to how I feel now.

I've led an interesting life, always have a story to tell, to always have a trump card on most stories. I feared being boring and now I hold my tongue, sometimes. And now I do this, get it out of me here.

Applying for funding

It might be that they (the NHS) have to apply for funding for treatment every time but I know about this one. I know that I'm expensive.Taxes for me are such a small part of the gratitude I feel to being able to get the support and treatment I get. I've always felt privileged and blessed to have the NHS there for me. I don't know how long it can last.
I imagine this is a tiny part of what Americans feel or fear. Not knowing if you can afford the best cure, even the right scan. It's bad enough having to know you need 6 monthly scans and various other blood tests etc. When I get worried about an odd feeling, I, well, worry but I don't worry that when I ask my GP or my genetic nurse to get some advice, do a test and help and I don't expect that I'll have to find the cash.
What do I do this time, what do I do if they say," oops we;'ve really run out of money", or "Sorry the budget just won't stretch that far and there are other people who need it more."
And naturally I'm still waiting. Oh the waiting. Pals, friends all resisting the urge to ask, "do you have a date yet." and then they don't, I suspect because they worry I have got a date and I'm not telling them, or they missed the email or just because, unlike me, they haven't practice patience quite as often.
I'll probably send another email if I don't have a date by Wednesday.

Melt down Monday

Had a wobble today, the straw that broke the camels back? It was incompetent staff, a waste of my time and their intellect.
It shocked a couple of people - it left them unsure what to do - they could scoop me up and hold me and let me sob which is what I wanted, what I felt I needed, I sat alone and was watched.Their indecision? Well a myriad  of reasons. I sucked it up... that's what you do.

One of the watchers was a friend/co-worker  who perhaps hasn't seen it  before, as I've always managed to hide it better, said I was like one of those penny slot machines, loads goes in, and keeps going in and then all of a sudden that one penny sends a whole load of them crashing through the slot.

It made so much sense, even the fact that you don't even notice where the pennies land and the tray doesn't look full in places, you think, loads more will go and then  - oh but not there one more there and then it lands and nope, actually it's holding and the unexpected can bring it all down around you.

If I'd let myself today I think I could have cried for an hour but I was at work and I had to get on so I picked up all those pennies (minus a couple that escaped under the machine) and quickly shoved them back in the slot.

Later that day I said fuck a lot in my office, to a colleague that finds that quite funny, when people just wouldn't stop coming to my door even though I wasn't the person who they should have been bothering. A couple of pennies dropped.

I taught a good lesson, they, the students, made me laugh, one dropped

I called someone and we talked, one more

I cried on the way home, a couple more

I'm writing this - another one

Trouble is, as each one drops more seem to go in while I'm home or thinking about my enemy.

Hiccups

I've got hiccups.

I've been getting them a lot over the last few month, perhaps more. I get them at least 4 or 5 times a day, more today.
The interesting thing about hiccups is that there is a group of people who feel compelled to let you  know you have hiccups. Then there is a larger group who feel they need to tell you how to get rid of them.

As tempting as it is to say 'it's my brain tumour.' I tend not to, I tend to say yes. I never take their advice. Those people are convinced their way will work and that you have not thought of it yourself, I've never really seen why people feel this is a bodily function that we should try and stop.

Someone pointed out that it might be because we need a thing to say, like ooh pardon or bless you but we don't have a formal hiccups reaction.

I thought that was a good point.

zap away

We met with the man... dad and I and we have both signed the consent forms. The big yellow sheet that means you understand that you are letting them do something to you.

I'm currently having my first online CBT session. So far so like a blog!

You shouldn't look up side effects

In a bid to be prepared for my consultation I referred to the trusty internet and as always went to Cancer research and NHS as I feel I can rely on them. Not great stuff, but there are very few good side effects. (the tan is one!) But now I'm thinking maybe I should have buried my head in the sand.
A shunt, swelling, severe headaches and more besides. Traditional surgery anyway... Side effects that could happen straight away, months or years later. All seem bloody horrible.
Loss of function, not being as focused as you were, concentration etc etc
Will I be allowed to drive... with that list I know I bloody wouldn't say I could.
This disease is such a pain in the arse.
Today I cried quite a lot. I  called my mum and despite her calm and sensible advice and warmth I know I worried her senseless.
'It's so hard mummy.' and 'I give up.' fell out of my tired mouth. I really did feel that way this morning. If I hadn't been invited to a party I might have had yet another sofa day.

I read a post on depression, so much of what the blogger talked of applied to so much of how I feel. I felt hopeless and lost this morning. This evening I'm looking up side effects so I know what to ask.

I understand why people talk about fighting cancer, it isn't like you can will your white blood cells to attack, it's much more about getting up and getting on with your life even when that is the last thing you want to do. The days are very hard. If I could switch my brain off for just a little while I might get some rest but even sleep doesn't offer me that comfort. My dreams are vivid and frighten me, I wake up crying, angry and afraid.

Perhaps that why when I feel there is a glimmer of happiness I run towards it, when there is a chance to feel numb I take it and when I need to I call my mum, sister or a friend. In spite of all of this I have them, I have that love.

Home alone

I'm at home on my own which is rare now that I have a little girl. She has gone on an adventure with her father and I'm staying put.

Not that I don't like adventure, it is just that I'm more of a worrier and I don't want to ride a bike that far to get wet and not have cups of tea.

He is an amazing dad, the best and he always will be. I hope and I need to know that because who knows how long I'm going to be here to be the mum. I'm hoping ages, I'm hoping medical technology keeps me alive and well but as yet there isn't a cure and so I know there is a chance that I won't be physically able to be one type of mum and in my darkest moments I wonder if that sell by date might just come true.

I've bee getting pins and needles again this last couple of weeks and at 11.4mm I think that brain tumour of mine is doing a bit more than giving me hiccups. I'll keep a note.

A medium mood day.

A down day

Letters arrive for those of us with VHL on a regular basis. Appointments, follow ups scans. In these days of electronic communication it is a surprise to have so many piece of paper. Today three came with NHS written on the envelope and I hoped at least one of them would say when I was going to see the consultant and at last I'd feel we were moving forward. But no they were not and so I'm still waiting, waiting, waiting and I don't even have the distraction of work.
I've been trying to fill up the next few weekends to help with the passing of time.
And the disappointment of these letters today have taken their toll on my mood. Luckily for my little girl she has friends over and they are being silly and laughing and she hasn't noticed I'm grumpy. Oh and I am so very grumpy.
I tried calling other people but I couldn't shift my mood. I thought this might either force me into a good cry or cheer me.
Nope, neither yet.
Ah well, I'll grump on and feel sorry for myself for a bit longer.