'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.

Understanding the time line

We've spent time catching up - it's a lovely phrase and a lovely thing to do. Sitting with family, making sure we all know the main events of the last year or so, the big ones to come.
My cousins have been in life for a very long time and I find it strange still to know they are grown up and adults. They will always be my little cousins.

Yesterday we talked of my dad, they have spent more real time with him in the last year than I have. I thirst for their experience and want to know the details. Their perspective. I think it will help me next week when I am with him and when I see him again in all his disability.
I find it so hard to see anything else and part of me is a little ashamed of that.
My excuse - I don't want to see that reflection in my mirror. I comfort myself that that won't be me but I know, logically and emotionally that it could be, different but the same.

I don't say it often, but yesterday in response to a common question about plans, I reminded my husband that both brain tumours have caused issues in an unplanned way, both were not in the routine scan phase, both caught me and everyone else, Drs included, off guard. I checked my little girl wasn't in ear shot when I said it. I need to protect her from unnecessary worry, she's like me that way.

I have a headache today, and my husband has noticed I'm guarding my left side more. When he notices things they feel bigger. I've felt a change in my blood pressure. But then I know that in recent days I've changed my routine, done more exercise, haven't had any drink for a couple of days and started taking my hydrocortisone more regularly. I'm looking after myself and yet I can't sleep well and I'm more worried than before. Too much time to think, too much time to worry and I do.

How long can my current dream last? Anyone's guess.

I cope by making a variety of plans, by putting some money aside so I know I can pay for a stupidly expensive flight and operation if needed. I plan for next year, 2 years and more. I pretend I know what I'll be doing in 10 years time but that always stays vague, and usually - be a Head Teacher. It's a realistic goal and one that keeps me focused on what I think I can do. I'm not sure I want to be there, a big job and stressful. I think I'd be good at it.

Real life keeps me going.

Vision Express

They mean what they say, into a small room three hi-tech machines and within 15 minuets of arriving I've have 4 eye tests to a level of sophistication done that my 9 year old self would have only thought a sci-fi dream world.
I know about eye tests, if you've look at previous posts you'll know. I've been though the horror days of yellow dye and pinning my eyes open.
Yesterday I was a good citizen, I let the new options (more than one) look into my eye and the post graduate who had never seen one in a real patient. I was a teaching tool.
I enjoyed it. 
I felt useful.

Another small step

Yesterday I had my words published on line. A small article in a small charitable publication.

I shared it with various people. A step I wouldn't have taken a year ago. I think I'm getting close to the idea that I'm not boasting. I'm not seeking attention for the sake of it. I'm sharing.

TV guide

There are often differences, in generation and place. And there are three memories of similarity too. All rolled up into shared experiences and conversations.
I'm drinking wine with my father-in-law and he gives me the TV guide.
I haven't looked at one of those for years.
I feel the warm comfort of the past reminding me of my own father and a time when you chose what to watch ahead of time.
I feel loved and cared for by this simple gesture.

The importance of a day

Today is the last day, so is tomorrow.
The day after will be too.
And the next one.
The last day means something.
As a teacher, I repeat this year on year.
We have so many 'last days'
They mean something.
They are a rite of passage and real and unreal.
There are days that have more significance than others. Memories that last and fade and linger and disappear and are false and true.

Here and now.
Gone and forgotten.
Forever and never

4 years

It seems so long ago, but looking back it was roughly 4 years ago when I felt poorly enough to tell a Dr and a Dr admitted me into a hospital.
It had been building and I didn't know. It's a common experience. To suspect and so often try to reassure yourself it's nothing serious.
On this overnight stay I simply needed fluids, my salts were low.
Fix that and off to go.
That happened again about a month later.
3 months after that and I had a craniotomy.

That's why it's so hard to be calm about a new symptom and why I try to be aware.

I'm healthy and well.

I'm planning on staying that way.

I know it won't last forever

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.