Avoiding Facebook

My country is about to make a big decision and potentially so is my place of work.
I made a decision to temporarily stop following brain tumour, cancer survivors and VHL things on Facebook.

I hit the snooze for 30 days. 

I have too much in my head to think about that right now and I realised that I'm inundated with updates from strangers. Right now that's not healthy for me. I need a break.

I really need a break and in my small community that is hard to do.

If I could right now I'd go and spend a weekend at my mum and dad's. I'd go alone and I'd enjoy the solitude of the drive and the initial pampering from my mum and then I'd also enjoy the inevitable reality of their lives. Of course that wouldn't be escaping VHL, there in the adapted house that retains the memories of my childhood, despite the new room for my dad and the wheel chairs and scrapes, it would be my VHL. My story, the one that is most real to me.

Telling new people

As a teacher this is an annual event.
I don't gather any new students or staff around me and say... to understand me here's the list of scars and tumours, resected and remaining you should be aware of, but maybe I should.

Part of me thinks that no-one need ever know but there are stories, moments, medical wrist bands that signal a difference, and recently it's been the mental health side of my journey that has been most valid to express. Not least to acknowledge that I'm fine with my lot, today but there have been days where I wasn't.
It's a useful vulnerability as so many of us have the hidden battles and unseen scars of a life full of fear, anxiety, depression and stress. Seeing me strong and seeing me weaker is normal. I am a leader and I think there is so much importance in owning your faults, failures and struggles.
Here I am trying to do my best and sometimes I fall short and so do you. So let's try again together.

as luck would have it

Here I am. Alive and kicking.

Out with friends and coping with all the mundane reality 

My crainiverseary... 

Photos on your timeline

How many pictures do you have on your timeline in hospital?
Between me and my dad I have quite a few, the familiar lighting and flooring. The bed sheets and the scars.
I began to take a record when I took a picture of my dad's head before he was going in for more surgery.

For us both they tend to take away the scar that went before and replace it with a new one, a new part of our story.

What they take away belongs to us, a part of the process and journey and we're stronger for it., perhaps, yes in fact it is. My dad's body might not do what he wants it to do anymore but he's no less strong.

I am strong. 

when your confidence gets knocked

It's been a strange and difficult week at work. We've been inspected. 

I know I did everything I could during and I kept my integrity. I wasn't sure what that looked like in this context. Now I do.

It's been hard because I've seen others keep theirs and then one who hasn't. 

All this stress and emotion made me feel like I was disappearing into the fear of VHL. It's time like this when my resilience drops and I worry.

Pins and needles in both arms, light headed and tired. 

It isn't over but I can get up in the morning. 

Recovery is a long road

I don't have post traumatic stress disorder, I do however flash back to those days in hospital and the overwhelming fear of being there again.
Recovery of the body is slow and not always complete and recovery of the mind is even slower and I'm sure never complete.
I am doing fine, I am happy most of the time and I can keep the enemy at bay with a mix of love family, friends and a whole lot of work. I enjoy worrying about work and how to improve the school I work in. I enjoy pondering what thing I can potentially fix or change so that the students in our care have a slightly better experience. In the grand scheme of things I wonder if I make much of s difference, but I make some and on days like today, that's enough.
I am there for people, I like that too. I suspect I've missed some signs and missed a few cries for help, but generally I think I do ok at that too.
I enjoyed being a coach the other day, I enjoyed saying yes to a worry and easing someones mind. I enjoy knowing I'm part of this world.
I let all this take the place of the small and persistent voice that reminds me of how my body could change all that and how easily my life could become a long and drawn out experience of asking for help, request and demands. Like my dad. Although over time he does some of those smaller things, it takes him so much energy to write a short email.
I hope he knows that when he reaches out it matters to me

I think I'll tell him.

70 today

My dad turned 70 today.
This is somewhat of a medical miracle.
I wonder often how he feels about the life he has now and the life he used to have.
At 70.
Did he expect to last this long?
To my fellow VHLers someone getting to 70 is important, is an achievement and something we think gives us hope. But I know how hard everyday must be, how difficult the routine and not just for him, but all of us.

Especially my mum. 

When someone else is ill...

My husband is unwell, I know this must be, because he has taken to bed and despite trying, he has had to stay in bed for two days.

I'm quite good at being there for him, well, I'm here and I check on him.

He keeps apologising.

He needs to rest, his illness is a virus, the Dr says the cure is rest.

He is dizzy - I thought, brain tumour.

He said I had it worse, I did.

He better get better.

Coping and worrying

I keep it in check, but I am a worrier. Having am almost teenage daughter helps me focused. My mum, with the bet of intentions told me many of her worries, I could see it on her face and I think I was trained to worry.
I don't want my daughter to worry like I do, but perhaps it's a genetic flaw I have passed on.

I hadn't realised how worried I was about my husband until I saw him starting to get better. He is recovering and I've cautioned him not to move too fast. I could do with him being well, but he isn't and I'm getting on with that, Happily, here our community or neighbours and friends make it so much easier to cope. Little things like a tin of beans after a long day and the comfort of a cup or tea and a chat.

But worried I was, I don't like seeing my strong man unable to get up.

It's made him remember, or recognise how horrible it must have been for me. Not that he ever doubted it, but until you've been dizzy for more than a few hours, you can't really understand. He knows how much worse it was for me, he was the helpless one, sitting by  my hospital bed, trying not to show it on his face in the first few days, then no longer having to hide it as I wouldn't open my eyes. I could sometimes hear the catch in hos voice when he was encouraging me to eat or convince me to have a scan I couldn't face. 

Cancer of the elbow

I know I'm not the only one, but every time my body does something unusual or different I imagine the worst.
Last night in the comfort of friends sofa we joked. I felt the relief of articulating my irrational fears, my elbow hurts.
Cancer of the elbow.
You see it was true for me that - you have hiccups you have a brain tumour.

I've convinced myself on so many occasions that I have something new, unrelated to VHL. I await the diagnosis of labial cancer, I won't get cervical cancer, I'll get something rare and not at all connected to VHL.
I have been aware for a long time that life can throw you anything, good and bad and as I accept my privilege and good fortune, I accept the unfortunate and rare too. I don't dwell too much and I don't let it get in the way, but it is there, lingering and insipid.

Knowing your surgical anniversary

I don't, well only one of them.
The one that meant my baby girl came screaming healthily into this world.
That's the only one.
I've notice that the other 7 are not dates I can recall, I have a rough idea of months for some of them and I think, given some time I could give am accurate year. But all in all I don't know and I certainly couldn't post about my 1 year, 5 year, 20 year anniversary.
Mind it's taken me all of the years I've been married to get that into my head. And that's because my mum and sister always send me a text so I'm getting better at knowing that month.

The significance of this?

I haven't got the mental capacity to celebrate because there will always be another one. And I have the strength to know that each day is a blessing and an achievement.

So happy anniversary to anyone who has survived and thrived.

And to those who are getting by.

Having a cold

I have had a cold, it lasted a week and I was so very grumpy about it.
I'm not good when I have a cold, it irritates me so much. I get angry and I feel very sorry for myself.
I am good at tumours and cancer... well so far
but a cold, useless.
It's to do with feeling my energy is being wasted and my time is better spent recovering from when I'm really poorly.

Fear and uncertainty

In the UK we are all experiencing a prolonged time of uncertainty and waiting.
What will happen, what will it mean and when.
Most people feel they have no control or power to change anything. A waiting game.

I think you can see the parallels here...

The UK seems to have VHL and I hope the invasive cancerous tumours are cut out.

'I love you' doesn't even touch the sides

I am very lucky to have true and real friends.
I feel loved and supported in ways that are hard to express and 'I love you' doesn't do it justice.
I've discussed unconditional love over the last few weeks. My mum and dad give it to me.

It was always made very clear to me as a child, 'I will always love you, I may not always like you or the things you do, but I will always love you.'

I have found and cherished those friends who I love unconditionally and I feel I collect them. Bring them into my life but perhaps in truth they have collected me. Kept me as close as I've kept them. It hasn't mattered how long the gap or that I don't remember certain details. Usually the names of their family, it matters that we care and the certain knowledge that we will do all we can to protect that.

It means that I walk my life with confidence.

Thank you wonderful friends. You are a small and precious group of people who I treasure and value.

Fragility

I visited my uncle this week, he has moved into a new home, much nearer one of his children. He has never been a strong looking man, a small frame in many ways, soft features and a gentle nature.
I know him as a kind and generous man, I don't agree with much of his politics but we have happily skirted around this, we have theatre in common and we have enjoyed meeting to go for a number of years.
Now he is frail, and is doing his best to not show it.

Along with his change, I saw over the time with my mum and dad that they too have become more fragile in many ways. Unable to do as much, unable to see the positives, unable to communicate and unable to see much joy.

My dad asked me to try to stay positive, no matter what happens.

We were all fragile at times, all easily bruised and occasionally the self protection made each of us snap, angry, lack empathy. It was a hard time, it was difficult to see and it was time I'm glad I had.

Holy day of obligation

My birthday went well, I stuck to my resolve and it felt good.
I went to mass, and as uneventful as that used to be, this time I bumped into one of my old teachers and had a nice chat with the man in the pew in front of me while the holy ones went for communion. He asked why I was't going up, right there, I knew, "you're not catholic", we don't ask we silently judge. I was right, of course.

The words have changed a bit since I last went, much more 'with your spirit' and it felt a bit Handmaids Tale. I wondered if I would feel differently, it feels comfortable and safe in church. I know it, I know the routine - I was annoyed they have changed some of the words. The pattern and routine of mass was such a familiar part of my life for over 20 years.

The first reading made me smile, it sounded mystical, something about dragons with 7 heads and more crowns and then the second reading was one I remember hearing, about Mary's visit to Elizabeth. I was amused by the last line. 'And she stayed about 3 months.' So ordinary, so like my life, 'oh we're staying for a couple if weeks. The sermon did its trick, the priest related the Gospel, the feast and the readings to us, to our lives. How we have accepted the struggles since we were Baptised. Umm, nope, I didn't, I don't recall the event, let alone the acceptance of the struggles of life. My mum has lost a son, she lives a burden and she is suffering, we didn't choose this.

Later that afternoon my friend came over, I've known her since I was 11. We know each other well. It was a lovely normal catch up. I recognised how now, that in our 40s life's struggles have been with us both. Possibly in equal measure.

And in the early evening, we went for a  meal at our local Indian and it was good, I sat next to my dad, I helped him, I made sure he ate and didn't spill, I tried to keep him in the conversation loop, but it felt forced. He fell asleep a few times. I wasn't sure how he found it, I was afraid to ask. I look at him and I can't help but see a possible future. How will I manage it, will I let my daughter feed me in a restaurant?

He wouldn't do it if he didn't want to. I know that.

More wheelchair experience

I've learnt not to walk by his side now, one squashed foot later and I know he needs more space than last time.

Wheely bins on pavements are a huge frustration.
parking on a dropped curve,
not cutting back your hedge - please do it
rubbish  - it gets caught in wheels
passing in front of the chair - go behind it isn't that hard

and more
but I'm ranting

Going back to my original home

Not tomorrow, but the day after I go home.
The original one, well nearly.

I had a very happy childhood, I don't have any bad memories from my earliest years. I remember love and joy, space and family. Our dog and seeking attention from my brother and sister and sometimes mum and dad.

I've been told we didn't have a lot of money but I never felt poor or that I was missing out, because I wasn't and I didn't.

My parents gave me that and I will forever be grateful.

Naturally things change, I got older and life became more complicated but that start was the best anyone could wish for. I started off happy and optimistic and that habit won't go away. Perhaps that is why when a few years ago the unhappiness was daily and my daughter was suffering we changed things. I'm so glad we did. Me and my little family took decisive action.

I am happy and content almost all of the time these days.

And perhaps that is why I'm nervous about going home. When did they stop being happy?

Of course we laugh and enjoy life as best we can but there is a deep sadness that remains. It's easy to think it began when my brother died. No parent can truly be happy again after that. That would make sense. And how can you be happy when you have been forced to live a life that is less than you anticipated. My dad, barley able to feed himself, carers in and out of the house, limits on daily activities. Not the retirement they had in mind. My sister, still a stones throw away, bound by her belief that she has to be there, to visit, to listen, to send her children around. The negativity that surrounds their daily grind. I can't look.

Is it wrong of me to want to escape that, to have gone so far away?

It is in no small measure a selfish thing to do, to have gone away. I didn't know when I set off to start a life in London that that was what I was doing. It was the biggest step I'd ever taken. And each year on my brother's anniversary I knew I was so very far away.
I got on with it. I went to work and I had a normal day and I called home. It is a day they let themselves be openly sad. They allow it to fall around them on that day and don't try to pretend and on that day I pretend the most. I pretend that it is any other day, a normal day and it is so far from it.

So I'm going back for my visit, I'm feeling anxious and steeling myself to absorb what needs to be, or take up what I can while I'm there. I intend to listen more than talk, I intend to sit on my dad's bed and listen to music with him. To walk with my mum and the dog, to get my mum to do something new and different and to try and laugh a belly laugh, but not at my mum's expense (cheap shot). I intend to go to mass with my mum and hold her hand. I intend to encourage my daughter to talk to my dad, as best she can. I hope that by doing that, even for just a short time I can bring some happiness into their lives. And as I type that I know I will, by virtue of being their daughter and having come home to visit. And then I will go again and leave a gap.

Reaching out and making connections

Sometimes it doesn't feel like reading about other people in the same situation will help. However, when they understand, are strong and weak, capable and know what it means to fall apart it can be such a comfort.
A complete stranger and their story often helps me feel more normal despite my defect.

Through my recent delve into Twitter Claire reached out

auntymbraintumours.com

Here is my first guest post

It's  her about page... you'll see why we connected

Hi, I am Claire Bullimore

I am the author of A Brain Tumour's Travel Tale and Founder of Aunty M Brain Tumours.

My goal is to raise awareness for brain tumours and support any person who has or had a benign brain tumour.

This blog is here to give my opinion on a number of this that I feel with be helpful to a person who is affected by a brain tumour.

This blog is part of the social media platforms under Aunty M Brain Tumours. People can connect on the Aunty M Brain Tumours Facebook Page or Twitter. There is also a private Facebook Group where you can speak to others and support one another.

Aunty M Brain Tumours was set up in 2011. Social media was only just getting going, and there were very few places to find support online for brain tumour sufferers, or survivors unless you searched the web hard.

Why the heck would I want to get involved with brain tumours?  Well, because being told you or your loved one has ‘a brain tumour’ is a life-changing event, whether it is cancerous or benign.

I was told I had a brain tumour in 2008 when I was only 25. I had a 10cm Intraventricular Meningioma and had to go through surgery to have it removed. I know the struggles that come with this devastating diagnosis and the life-changing effect it can have on a persons life.

Claire's MRI Scan of her brain tumour in 2008

I started Aunty M Brain Tumours on the 23rd May 2011. It was my 3rd Cranniversary. I wanted to celebrate my 3rd year since my brain surgery (craniotomy) and start something new.

I set up a facebook page to connect with others. That grew and I was soon on a number of other social media platforms with over 16,000 followers. In 2013 I was invited to be a radio presenter at a local station which was via podcast and was able to have a show dedicated to people affected by a brain tumour. I interviewed a number of people and you can listen to their stories HERE

To show I am not just talking the talk, I also walk the walk. You can find me in a number of publications raising awareness for brain tumours. Such as The Sun, Choice Magazine, Best Magazine and Bella Magazine.

I went on a UK Book Tour to promote the first book and was able to do this through Crowdfunding. I met so many wonderful people See Photos

I am here to inspire and motivate you. Let’s do this journey together.

Claire

x

time and choices

This is the long holiday, a time to catch up and spend time with people.