I was right, Macbeth wasn't

 all is well in the state of my body. (mixing my Shakespeare references a little but you know...) 

As well as can be expected given the list. 

I am proud of my list. 

Currently:

EYE  - Optic eye tumour, full thickness macular hole

1.     LEFT KIDNEY cystic lesion 13 x 12 mm in the midpoles of the left kidney sepated

2.   RIGHT KIDNEY midpole cystic lesion 12 x 18 mm, Postcontrast enhancement of the right renal cyst is septated seen.

3.    LIVER - small hyperintense focus on T2-weighted imaging with associated enhancement post contrast in segment 8 of the liver measuring approximately 6 mm.

4.    PANCREAS - cystic lesion seen in the tail of the pancreas with no associated
enhancement postcontrast, the largest measuring approximately 6.8 mm. No definable masses in the pancreas.

5.    BRAIN - There is posterior angulation of the spinomedullary junction and an enhancing lesion measuring 3 mm at the posterior aspect of the spinomedullary junction in keeping with a haemangioblastoma.

6.       SPINE - multiple cervical small enhancing lesions in keeping with haemangioblastomas.  A similar lesion is also seen at the level of L1 vertebral body. The conus medullaris terminates at the level of L1. There are multiple haemangioblastomas in the cervical spine 

  

Ehancing haemangioblastomas is also seen at the posterior aspect of the spinal medullary junction.

Tomorrow, tomorrow and tomorrow

 When Macbeth said it, he was feeling rather gloomy. 

I'm rather optimistic. 

Let's see who was right 

18mm

We have a friend on campus, who, no matter why a reference to size is mentioned, will inevitably make a joke about the size of his willy, or possibly the size of a vagina. And despite myself it does always make me smile. 

Size matters. 

I'm waiting on the comparative scan information and so with the information yesterday I can only be cautiously happy, but from the previous letter and the report from the most recent scan (last week), 18mm is the same. 

There are a number of caveats to this. 18mm in one direction is good, but what if it's got fatter. Is it a cyst, simple or complex and where is the critter. And also this is in just the one kidney, there's another one with a smaller cyst. 

cyst

growth

tumour

cancer

all can be the same and all can be different. 

size matters

3cm is the generally accepted danger zone, rate of growth is important, but if what I'm tentatively allowing myself to believe is true, then no growth over 19months is an unbelievably good sign. I've had tumours not grow in me for decades. 

Decades in medical advancement means A LOT. 

I think, I hope and want to be sure before I let mu guard down, but I think then, this is the best possible news. It also tells me living a less stressful life and enjoying the sun are important. 

waiting with twitter

 At some point my twitter and my blog will converge and I wonder if I'll then do a kind of double entry... 

anyway this morning we are home, the flights back only slightly delayed and no issue over our covid test, which had been a mild niggling worry I had the two nights before departure, I've learnt over the years to voice these fears only when it will help me. This time, I didn't want to say it out loud, because only for the briefest of moments in the last 6 days have I been out of ear shot of my daughter. We protect them from our worry when we can. 

She sees through me so well now, the worry about the scans haven't been anywhere near as well hidden as I could manage in the past. I think she has a healthy mix of worry and stoic acceptance. Some from me and some from her dad. He never seems to worry like the rest of us do, when he does I use that as my barometer of potential doom. 

In the last week of term my daughter went to see the school counsellor, she just needed to talk and I sensed that, she needed a space to say what she worried about without any dismissal or layers of, yes buts... she needed to be able to share her fear without us hearing it. The school counsellor told me she was extremely impressed by her emotional maturity and that made me happy. 

It was prompted by a night out where she got very upset about something in her past, she was bullied in England and this has stayed so raw for her, but my instinct told me this was more about now than then. We talked about how she might be able to think about it without such a vivid trigger response and we both know that this is something more complicated than what appears on the surface. Within all this, in the same week we talked about a girl here, the sort who is lost, she doesn't know how to be an advocate for her friends and she doesn't know how to get attention without being unkind, she makes my daughter sad and angry. We talked about why she might be an arse hole. Her mum died a few years ago, her father seems disinterested and her older sister was a teenager when she assumed a peculiar role of mum/sister. Despite these valid reasons for being a bit of a mess, my child said, yes but mum if you died you wouldn't let me be an arsehole because of it. She's right of course. no excuse... but we've talked about that, I have had the luck to ensure I say what needs to be said, to understand my mortality and therefore ensure I've been clear on my beyond the grave expectations. 

And at these times, the wait the inevitable wait, I know why. My mortality holds me and whispers to me when I'm trying to sleep, it taps me on the shoulder when I'm making a cup of tea and it stares me in the eye as I hug her. It sings with me and laughs with me and it won't ever go away, we all have it of course just some of you may not have met her yet. Today I'm glad I have because I value my life and my health and my days here. I relish food and drink and good company and I see her way off in the distance now, she's walking away because it isn't time to dwell. 

Not today. 

a newbie again

I wasn't sure where to go, what I needed to take or how to fill the forms in. 

My husband came, my daughter came, that helped by hi t go. Only one person allowed with you. Oh covid.

It all felt new and yet familiar. All broadly the same but enough different to make me nervous.

My name was said in a funny way, luckily I realised it was me. 

I asked for help. 

I was allowed to keep most of my clothes on. Bonus. No gown. different.

I asked for a blanket. The same

It was soft and fluffy. Different

I had to hold my hands over my had for t go scan, that was different.

The technician asked about me and my disease, in a way that made me feel special and important. Different

The noise was the same. The banging and variety. 

The injection was the same.

The automated voice that told me when to breath in and out and relax, same job, but not a person. 

The length. The same

The resolution. The same.

The results... We wait. The same? Oh how I hope.

Just about coping

 Today I had a moment of repetition, like the time 7 or so years ago on the yellow staircase at my school, holding onto the banister and breathing, telling myself out loud, 'you can do this'. Then I held back tears, not because it's wrong to cry but I need to cry when I am not trying to cope. 

'You can do this.' 

I did then and I will now. I'm holing onto the stress and softly said to my husband today, I don't think I'll be able to relax until the scan results. 

'Of course' he confirmed and the simplicity of his reply helped, reminded me that I'm just about coping, but that's remarkable. 

The layers of stress are thick too, it's not just an annual scan, it's moving from our relative safety, it's the need of paper work, it's the COVID test first, the bloods, the new hospital and the complete unknown of how my team get to see the scans. My child, my friends, my family, all quietly worrying too. 

I'm not going to have a drink tonight. I'm going to sleep and maybe have a good cry. 

A nice up of tea

 I just had a nice cup of tea and a bit of a cry. The power of a good friend, ready to let you let go a little bit can't really be measured. 

She and I haven't seen each other as much recently. I know how lucky we are that, when so much of the rest of the world is doing everything remotely we get any time at all but the quality of just popping round is endlessly important. 

I didn't let go completely because, right now, I can't. It's not so much the scan but the results. We were talking about if we might host a new years eve party. Depends on the results. I'm already in, who knows what might happen. The extreme possibility is that I need some kind of immediate intervention. Get it out now now. Best case scenario is always, re-scan in a year. 

scanxity

I'm quietly freaking out.

I'm used to a level of routine and the annual process. I'm used to my hospitals in my country and now I've got to do it in a new place and a new country.

Even booking the flights is causing issues. 

The frustration and fear, bubbling around. 

My uncle Ken

 This morning I received the sad news that he had died. I knew he was ill but it was still a shock. He was a constant in my childhood, a calm and kind man who always made me feel loved and valued. He was one of the first people I was aware of who got divorced and this seemed an extraordinary thing and at the same time no issue at all. 

He came with his stories and strong accent and I overwhelmingly think of him with a moustache. He leaves behind two children, my cousins, both grown up and with their won children who will, without doubt be very sad to have lost their loving granddad. 

The thing I most treasure about him is that when he worked, he was a funeral director and when my brother died, over twenty years ago, he brought my brothers body back home and took him safely to the church where we got to say our last goodbye. I always loved the thought that he had taken care of him, as I know he would do for all of us, and for many years comforted myself with the knowledge that if I were to follow in my brother's early fate, my uncle would, without doubt look after me too. 

I'm so very sad for all those who loved him, not least my dad, his big brother. And I see just how strange it must be that my dad has, against all the odds, outlived his little brother. The older I get and the more people who die, parents of friends, cousins, uncles, aunts, brother's sisters I see how remarkable it is that I really thought I wouldn't have my dad around now. That those who have always seemed healthy and strong have gone before, that I can see more people I love experience grief, is a surprise to me. And in the veil of sadness I take a sip at hope and cherish its warmth because I see that I may be here to know and love m grandchildren and be around long enough that when I die, my daughter will have had me around for a very long time. 

no matter what room you're in

You still feel fate dancing around you.

You still know that it can change on a whisper

You know that some people get it and some never will

You see the gap between getting on with it and getting by

I did it again

 such was the success of my talk to year 10 biology students I was called on to do it again for r 12. Such a privilege to speak to them about my experience and to raise awareness. I couldn't quite remember my list, skipped some bits and went back. 

And, almost as if the VHL fairies were aware of my good deed the scan referral I have been waiting for came through. I was amused that it wasn't a complete list, even my doctors aren't sure what I have and haven't got, had, been removed. 

So all things being well I can now move forward with booking a scan and can find out what the potential damage may be from the delay. And it made me feel strange. It was so real today. 

precision over beauty

Across the globe teachers and students are coming to terms with the prospect of another year of teacher assessed grades.

I'm currently in a bar, with two TV screens, one showing golf, one showing gymnastics. Both professional level.

The golf good holds more beauty.

The gymnastics has become a way to give a score. Impossible for me to do it. Golf, so much for accessible. 

They should both feel possible. Only one does.

And to exams. 

It's become about prescion and not about beauty. It's about collecting data, quickly. 

It's about right and wrong.

It's clumsy.

It's unfair.

It's never capable of being perfect.

craniversay

It's still remarkable to me that I'm where I am today. I remember the complete reliance on the hope that 5 years ago, they world say ok, yes we will operate. Those of you who know, know. Surgery can be booked in and yet so many things can prevent it happening. 

I don't remember the night before being very different to the many that went before except that hope, an anxious, delicate hope that I almost didn't want to believe in. In case it was snatched away.

I suspect that's how many people are feeling about the election in America right now. Almost too much to believe in, the outcome potentially saving you or the dangerous, frightening chance that they will be even more peril than before.

'I can only make one garuntee and that's I could make you worse.' 

They didn't. I woke up as me, a new me, ready to scrub off the layers that has invisibly stayed on me as I lay in the hospital bed. I know that most of that is gone. But you can't ever be the same after a prolonged exposure to fear and discomfort. I hope America can heal, move on and live with joy, appreciating what it so nearly lost. I am. 

onion under my finger nails

This has been a bliss filled week. The worry and strain of the everyday slowly disappearing and giving me space to be and feel and love.

What greater joy can there be, than feeling the contentment of slow, sleepy days, a pace that can't get boring, a moment each day that makes you laugh aloud and some softer reflection that allows for a small tear of life to quietly appear in the wind that is blowing in your face. 

And coming home, knowing that you know how to be alive and how to live and that you're so blessed to be able to do it. 

For me knowing that 5 years ago I couldn't see this future, had no concept of anything but a life of discomfort, unpleasantness and pain. 

I've been given a chance to be the mum I am. For me and my daughter this time is so precious. We have played like children, talked like adults, laughed like teenagers and argued like a mother and daughter should. 

I've had space to assess what I need to do about my body, not just the cancer but the rest too, the wobbly bits, the exterior that is starting to show the 4 decades it's traveled. It's tanned and strong, slightly achey but not hurting me, not causing me to avoid my life. 

I know my body won't let me feel like this forever, so this morning, while I pottered about, cutting red onion, getting it under my nails, reading a chapter or two of my book, putting on a load of washing and planting out the air potatoes that have gone to seed, like them, I don't know if the protection around them will last, if they will grow into more than they were, but the hope is there and the chance has been given. 

raising awareness rather than money

A colleague asked me to talk to their year 11 biology classes about having VHL. 

I was so pleased to do it.

They know me as a teacher and now they know me as a survivor and warrior. 

They are studying genetics, they did the fact bit worked out odds and then I introduced myself... 

I gave the disease you've just been working on... 

I know it meant a lot to them but it meant more to me. 

getting close to normal

It's hard to know what normal might be when you've never really been it or in it.

In a recent email to my mum she replied...

'Wow, normal is a word I don’t associate with you, baby girl!'

As she exclaimed, I just haven't ever done that. The girls that bullied me at school would throw the accusation of 'boring' at me. 

I couldn't stand that idea. If you ever choose to truly hurt me, then that's what you'll throw at me. And if it turns out to be true then you'll have cut deep. But I tend to ward off that insult. 

Toni - was tonight

I wanted to write this all at the time, but found myself unable to. I come here when I need to get thoughts and feelings out and that night, not so long ago I tried to. 

I started but couldn't find a way.

I didn't want it to be too public. I'm used to finding my voice for VHL now, the other stuff, less so. 

This was as far as I got

'I find myself here

You wouldn't have decided to do that in front of my husband'

No matter how far I've come, there is still a road ahead on this...one day maybe I won't blame myself. Maybe one day there won't be a need for me to have to. 

the next two weeks

I want to be ready to listen

I want to be able to comfort

I want to be reassuring

I want to make the necessary change

I want to support

I want to have compassion

I want to help

I want to find a space for my family

I want to find space for my friends 

I want to find space for myself 

I want to finish what I start 

I want to lead by example

knowing more than you're supposed to

When I went to art school I knew more than most. I wasn't a great artist, I couldn't draw as well as anyone else on my course and I wasn't as inspired by life, experience as the rest. I was told by one lecturer to cheer up, go to Spain.

I was 18, the year before my brother had died and that year I was due to have the same operation that, as far anyone knew, had killed him. 

Spain would be nice, but there was no cheering me up.

I knew too much and to my art professors, just not translatable into great art. I wasn't grasping the opportunity of grief I was only letting it happen. 

Why am I remembering this tonight?

Because tonight I was part of a wonderful group of women, my book club. 

We talk, book clubs are rarely about the book you've read. They are a chance to say things about your life, to express and share. You allow the topic to roam, from one shared experience to another. The youngest in our group is about 36. I think of her as young but I don't assume inexperienced. 

We talked tonight and I shared, I feel safe doing so. We've all lived.

But a couple of times I thought, oh, you haven't been here yet. This is just my road for now. You all know it's coming, but I am the only one here with the past and the predicable future of VHL. 

All of us know someone who has had cancer, had a loved one die, felt grief, been lost in life, hated a job, a boss, a family member, know what suicide can do to those left behind. We know someone even if we haven't had it ourselves. 

So why then did I feel like I did at art school? The only one, the one forging the path of the inevitability of life and then, just when I could have said, whispered or cried my truth, stopped and waited for another person. 

Because it wasn't just my space and it didn't just belong to me. I'm not the centre nor should I be. And that's why I didn't thrive at art school. I didn't really want to be the one who knew more, who'd already faced my mortality and gently danced with it rather than faced it or tried to fight it, even though I wanted to just run away. Because like a shadow, you just waste your energy doing that. 

No, tonight I knew just a little bit more, wanted to tell my story, and did a little bit. A little bit at a time. No one really wants to hear it all. 

morning after

When I was younger I told myself I shouldn't have children. I told my husband this too, he was a boyfriend back then. 

Then surprise, the best surprise and even better, despite the odds, no VHL.

Phew, dodged the bullet. 

She knows that the surprise was because he father and I got drunk, lacked the necessary contraception and didn't worry about it. We are lucky that we didn't. 

My pregnancy was consultant led and actually stress free, a few tumours grew but more importantly so she she, strong and ready to be taken out by c-section. There were risks and some complications but 13 years on we know how that part of the story worked out. 

Sometimes my period is a little late. I have a small worrying few days. Normally though it's just that. I'm not a young woman anymore and right now I have various tumours and two kidneys with renal carcinoma. 

Last week my husband and I had an unclear moment. We discussed in the morning, we think we were fine. As the week progressed my worry grew, my feeling that it would be a very bad thing to be pregnant. I couldn't stay here, could I? 

I would need to seek another solution.

I am too old. I am afraid to risk VHL for me and it. I woke in the night, aware that my period tracking app was telling me my period was 1 day late. Just one. Only one. Enough to make me cry. Enough to wake my husband and tell him all the things I'm afraid of. Enough for us to be awake and discuss it all. I've never shared the level of far I have around this. The part of me that desires another child and knowing how selfish that is. He knows my Catholic roots and he knows what I've been taught to believe about souls and life and the guilt at even considering our choices. 

I googled being pregnant with kidney cancer. 

He googled my options. 

I cried and he held me. 

I knew it was just one day. I knew I'd spiraled into a state of panic. He listened, supported and I expect felt responsible. 

I worried how my child, the teenage one would react. I imagined who would judge me. I worried about if I'd need time off work. I began to plan for a variety of eventualities. I told him about other times in my life when the idea of being pregnant had terrified me. 

Still he listened. 

I thanked him for not dismissing me, he completely recognised why I felt the way I did, and so with my sense of not being alone, and that we'd figure it all out together, no matter what and after a discussion of the reliability of the tracking app, I got some sleep. 

By noon today my period came.

By 4pm he'd decided to call our Dr about getting a vasectomy. 

I think that will really help! 

I wish I didn't have cancer

Seems to obvious to say and most days I just get on. Today I got an email from one of the Drs on my VHL team. His care and getting in touch meant so much to me. Telling me not to worry about the overdue scan, letting me know they sort out out when I can get in. 

That care, that time. I wonder if he knows just how much that means to me. To know I'm still on someone's list, that I'm important enough to reach out to. The NHS staff are all heroes in my eyes. 

I shed a small tear, because I wish so hard that I didn't have this. I wish I didn't have to convince myself that I'm going to be ok. That it won't have grown and nothing else will have and of course, that there is nothing new. 

Wishing doesn't change it. 

I wish it did. 

Private Island

 It was a wonderful break. 

I managed to switch off. 

The break from my real life and a necessary one. 

this is all forest

Here, you notice poverty as a fact of life.

Here I'm rich. Very rich.

Here Covid 19 is another part of life, a problem, more an inconvenience than a life changing experience.

My part in this is to help the local economy survive. Keep employing who I can.

Keep buying

Keep eating

Keep paying

Keep keeping

to everything turn turn turn

Today my daughter turns into a teenager.

I'm not with her, she is on an adventure. I'm so very proud of her and miss being able hold her and kiss her and see her face as we celebrate.

Being here, that's the privilege. There's the joy. 

I'm still here and so is she. 

We are still a family and we are all very happy.

How lucky we are. 

Home alone

Although, I'm not alone. I have close neighbours and the internet, friends online. But for the next two weeks I am home alone. 

I've never fully lived on my own, grew up with my family, off to university, lived in halls and then chosen friends, moved in with my mum's cousin when I trained to teach, then into a flat share, communal living space and kitchen and then into a flat share with my boyfriend, who I bought my first house with and second, then became his wife and now I'm here in this community. 

I have of course spent nights, weeks on my own but this is the first time in a long time when I've been been alone like this. 

So far so good, I'm enjoying my space, my sense of self. I'm taking the time to look after myself, to enjoy the time and freedom to reflect and enjoy where I am and how I am here. 

Here, despite the world pandemic, despite the uncertainly and despite the niggling worries, is safe. 

I intend to use this time to prepare for what I can control, reflect on my ability to be a good teacher and leader and to administer some self care. This is a time to be selfish in a sensible way. 

I've created some expectations of myself, no caffeine after 12noon, plenty of water. Fruit for breakfast and enjoyable meals. No alcohol unless it is in food and listen to music, recommended by those I love. Some exercise, mainly bending and a gentle walk once or twice. Reading in the sun and a sensible time for bed, rise when I awake. 

As the term ends

I am hopeful that we can wave goodbye to online learning as the only method of teaching. The faceless, dry and often delayed method. I miss my students, I miss seeing them and helping them learn in person. Just a few days left this term and then the long holiday. 

The world can change in a few days, so hopefully the month and a bit ahead of us will provide some more hope and more information, that will make the possibility of opening a reality. 

I am living in hope. 

I'm good at that. 

speaking....

I think I claimed being raped about 4 years ago 

I'd always thought it had to be violent and sinister. A stranger in a park. A moment of ripped clothes and torn dignity. A cloudy figure who jumped out and took.

It was, almost that. But I knew him and at the time, I was drunk enough to believe he loved me, and old enough to tell myself I'd consented.

Sometimes when I'm nearly as drunk as I was that warm summers afternoon I convince myself I'm over it. I've understood it all.

I tell people about being a rape victim.

You're always past tense. Raped. It happened. The implication, it's over.

It never is. It's always there. 

Tonight I told my husband I loved him and as he took me, I trusted him. The biggest compliment possible. I genuinely consented. As much as I ever can. There will always be part of me that isn't sure.

My body creates things I don't consent to. I am angry with it.  How dare it. Such a betrayal. 

Why tonight?

I said out loud that I'd been raped to people I know and like. I was drunk and empowered by their care. It felt true to say it. It was true. It was my past. But now I'm worried. Because what if they felt uncomfortable. because they might feel uncomfortable. 

Always worried about it.

Getting it all out.

I wonder how many of us don't know how to feel about it. 

Black Lives matter

I've been learning, 

I thought I was at a good level of, not being a racist. I think I'm definitely up there with the, I' not actively racist people. 

I also thought, maybe I was quite good at not being unknowingly racist. 

But the events of recent days and weeks have reminded me of m=how much more I need to educate myself. 

It's not enough to have good intentions.

It's not enough to speak out against the obvious. 

It's not enough to recognise your privilege 

It's not enough to share posts

It's not enough to tell your child, this is wrong, we don't agree with this

I have to educate myself, I have to listen and allow myself to have been wrong and to learn more. I have to be willing to be better than I am. 

I'm going to try  

she isn't here

Like a lot of the world right now, I'm missing my mum, She should have been here, we should have been sharing my life and loving her face as she saw what I've been seeing for the last three years.

She's not, of course and I fear, now never will. But you never know.

And the chances are she wouldn't have felt she could come now as with my dad's possible diabetes and now the news he's been booked in for an emergency MRI, she would have been so very torn.

I am wondering what his next few months, years will be like for him. How will he manage this new set of symptoms and will they even operate? Can you risk a man with his disability to go in for an operation, and that's before any level of risk with COVID 19. What anaesthetist would take that chance?

Something will one day kill him, we're none of us immortal and he has lasted far longer than anyone ever thought possible, tougher than a bull elephant my dad.

A spoon full of sugar

I always pick up when my mum calls, especially if it's a strange time of day. I'm waiting for the news. Shed called yesterday and although it wasn't 'the' news there was more news. An update, a keeping me in the loop.
They suspect my dad has diabetes.
This struck me as another cruel blow. When your life consists of a sad and slow routine, one of his few joys is carrot cake, a sweet moment at the end of each meal.
For now, and who knows how long, he has to cut back on sugar.
This next thing, this is cruel.
VHL just is cruel.

more than enough

I'm not sure when it started, but often I do more than enough.

Cleaning

Contact

Care

The best people in my life I measure by a knowledge of, I am enough.

I don't have to do anything.

I do because I want to.

Because I can.

The only exception to this is my child. I have to actively stop myself doing too much so that she doesn't become a spoilt brat. I'm instilling independent worth. While, I hope giving all the love and attention are needs. 

Unconditional love. 

I've been given it, I've craved it and I've thrown it away. 

So when I doubt my ability to give that, I end up giving more than enough. 

inflicted by honesty

Saying how it is

Knowing who's listening

Acknowledging the difference

Be playful if you can be

Consider what you say

Am I private?

What you say can make a difference

Speak

Speak

Speak 

Fat Bastard

Had one of those days. Came home to a messy house, a dismissive daughter and an absent husband. 

Decided to lie in bed an read a good book. 

Had a little cry and got warm.

Got a message from a friend and felt a bit better.

I told my husband what was on my mind. He listened, didn't talk. 

Then husband cooked a lush dinner, daughter came and cuddled me while I finished the good book and we watched a silly film while I sipped a glass of Fat Bastard.

And I thought of you. My friends who know me.

I am blessed. 

And I thought of how brilliant it will be when we drink a bottle of it together. 

And now I'm listening to husband huffing and puffing at the online poker game and his frustration at his own playing.

And it's making me smile.

grumpy

I've woken up very grumpy. Perhaps a little too much wine bar night hasn't helped.

I'm grumpy at the washing up in the sink, the fact that the national power grid has gone off again, so the load of washing in the machine is now not going to be finished until the afternoon so it won't dry today.

I'm grumpy that some ex students on twitter have been rude about the school, when I know how hard the staff are working to keep us going and hopefully open in September.

I'm grumpy because our house keeper who we haven't seen for 4 weeks sent a message to say they can't afford to buy food. Even though we are still paying her, so I think maybe the other 2 members of staff who employ her might not be. 

And I'm grumpy because our tree house is broken.

And yet I know these are all such small things compared to what other people are going through and I feel like a spoilt brat. And that's making me even more grumpy. 

Holding onto you

I've been looking at photos from the past and trying to remember where I was in them.
The easy days I suppose, when you didn't think very much was significant.

I enjoy seeing how so many people look the same, I seem to always look the same, my face a little less round and my belly a little bit more round.

And a few minutes ago I saw a message on Twitter and it was a sign from a man on a ventilator - he'd written 'I'm not giving up' and I cried. I know that feeling and I know what it looks like to see it on someone you loves face. I also remember the time in that hospital bed when I told my mum I was giving in, I couldn't do it anymore. I couldn't try and more. I closed my eyes and told the universe I was done. My eyes were already closed and I thought that maybe that would mean the horror of what I was feeling might go away. It didn't and I endured. I kept feeling and I was saved.

I've wanted to give up so many times in my life, you're not human if you haven't. I am happy to give up in a Frisbee game and when I know my Yorkshire puddings have failed spectacularly. I've given up on thinking someone will love me, I've given up on people who have hurt me too much, although not often. I'm not giving up on much else. I almost gave up on teaching, I nearly left that but I'm so pleased and grateful I didn't.

So I'm not giving up on the idea that this school will survive this, that we will survive this. I'm not giving up on hope and life and I'll hold onto the knowledge that I am strong and so are those I love.

Tension is high

Navigating emotions when you're stressed and tense is hard.

I take cortisone replacement steroid because I had both my adrenal glands removed. I do have a tiny but that was left behind and over the years it has shown it can cope with quite a lot of stress.

We all have our ways of coping with stress.

I just realised I forgot to take my tablet this morning.

Done it now!

I realised because this morning I have been doing part of my job, that is helping the staff of our school through these difficult times, helping keep others in the loop, trying to balance need and emotion. And I felt my arms tingle. That is a sign that my cortisol levels are low.

And it's stress. The stress hormone.

I never even got to say goodbye

A cliche line from a film.

A regret.

A common reality.

And now, even more than the everyday. At least, it's now more public. 

I think about saying goodbye. I'm not sure if I'd want that. To be so certain and so sad and so final. 

I want the last moments between me and the ones I love to be much more of a see you later. Because even though I don't know what I believe to be the next phase of life. It shouldn't be goodbye, it's got to be see you later. 

Keep calm and carry on

I'm trying to control what I can, think of what I can control and not let myself dip into fear.
Some days it's harder than others.

All this, the world is aware of all the things they hold dear.

I'm keeping busy.

Online lessons, thinking of things my students can do from home and trying to balance the fun and keep the pressure low.

There is lots I can do, lots I will do.

I miss the teaching of actual children. My usual place of solace when I feel lost.

There has been a death of someone in our community and the tragedy of this can only be made good if it encourages everyone to be safer, take this all more seriously.

when you are isolated

It's clear that the world is never going to be the same. So many of us have now experienced, and continue to feel the acute anxiety that comes with such a huge amount of uncertainly.

As my family and friends are preparing for the inevitable lock down I am still struck by my previous experiences and how this fits in. I live with the fear and threat of VHL, right now one of my worries is the cancer in my kidneys and how it may or may not be growing and how I'll know. That thought sends a small tremor of worry through my gut. Frankly I don't know how I don't have IBS.

So often in my life I have held my worries silently in my head so as not to upset, freak out or annoy others. I have sat quietly and planned how I was going to survive the next moment. Most clearly were those three horrendous weeks lying in a hospital bed, most of it with my eyes closed and waiting for someone to say they might be able to tell me what was wrong and then waiting to see if someone was willing to fix me.

It's mostly just me and my thoughts and I don't bother many people with them, why would I, who would want to spread that. And then COVID 19 began to steal the security so many people feel, it has taken away the safety net of a comfortable life and exposed the fragility of life and I don't like seeing that worry and stress in others, in the people I love. And I want to stop them all. Protect them.
Keep busy, make sensible plans, distract yourself, look at the silver linings, be as positive as you can an cry when you need to, keep your chin up and remember:

everything passes, the good and the bad

COVID 19 and me

As far as I know, currently I don't have it.

Today the world suddenly seemed to get a taste of what a constant medical threat feels like. This virus is showing each part of the world how it feels to be unsure what the next few weeks, months and coming year has in store. 

Those of us who have lived with yearly results know this feeling. Frequently having bad news and not being sure about your health.

I'm nervous about what this new threat means. I'm worried for so many people, the ones I know and the millions I don't.

I'm disappointed by the disruption.

I'm also intrigued by the panic. 

I'm considering putting a few more tins in the cupboard.

My draw of UHT milk is full.

when your past sneaks in

I had what you could refer to as a re-laps. Nothing medical, all emotional.

I didn't know how to say, slow down, let me do this properly, this is my new place. Partly because I was so excited by the idea of it all, partly because I want that time to be made right. Even though in so many ways it was I wanted to share some of what wonder there is here.

And then there is was, someone here acting like someone there and my defences went up and my fear crept in and my worry spiked and I sat on the steps and tried not to cry, tried to fix everything. Got overwhelmed by the enormity of all of here and so I did what I always do - I got on with my day job. I retreated into work, even though this is all about work.

My strong and competent layer trying to stay there, and without knowing someone did it just the wrong way. I was right back at that oval table, eyes on me, answer, give details, and I felt the challenge and I knew I'd gone about it all wrong.

But I found solace in a friend and the compassion she has and the way she knows me and I cried more, let it out, said all the irrationality out loud and was able to take a step forward and as this occurred my guardian angel reached out and there too I could clam myself and know I could make the right choice, for the right reasons.

flying away

Today I've flown to South Africa. We're on a girly few days. 

New friends and adventures.

As the plane ascended I breathed a private sigh of relief. No nasty brain tumour. No headache, no symptoms.

I'm now me relaxed.

new year, new hospital

I've done my best bet to avoid knowing what the inside of my local hospital looks like.

I found out today. 

I was very frightened by my symptoms. Completely aware that it could be caused by all sorts of things. Completely aware that one of those things could be a fast growing brain tumour.

Completely terrified by the dizziness that didn't subside. 

Completely? Reassured by the neurologist. 

It's an infection. A nasty one. But not a brain tumour.

My husband was scared too. His silence at my worried ramblings about scans and flights and insurance and 'oh god, I can't go through that again.' were met with understanding and patience. 

I know I have cancer

and I know it's there all the time, waiting and maybe growing.
I had a sudden flash of fear this week that my time may be up. I wanted to run home, book into my GP and say - you need to check. How much is there now.
If it were possible I'd want to know everyday, just what my body is up to; behind my back.
If it were as simple as stepping on some scales, I'd be obsessed, I'd do it time and time again, before bed and in the morning.
Let's hope it's never that easy.
I don't possess a set of scales.
I do possess cancer.
well, it possesses me.

To everything, turn, turn turn

I have space to think here and I do a lot of it. To drown it out when I want to sleep I listen to podcasts.
But sometimes it is good to think for a long time.

Life here allows me to think about what I value and time after time it floats back to being happy while feeling I'm contributing, making a difference.

I consume social media and follow the news. I'm struck by the juxtaposition of the joy and horror. Here it's full of the same but perhaps more stark. The special school I visited have almost nothing. They have a room and chairs. One table. A handful of pens. 3 exercise books. This is common here.
We can't change much here. But we have to do something. Spend money and make sure it reaches the people who need it. And give money.

So I feel like my life is extravagant and I feel more privileged than ever before. And I am happy but I could do more.

The unknown

One way I cope is to plan various outcomes to the unknown.

I think them through, who can help, who I'll be, what I need to organise.

I've lucky enough to have a pal who is happy to listen to these plans and she has the good grace and love to join in, to agree or suggest and today she even got excited by one of my random plans as it would mean we would be close to each other in this imagined future.

My plans don't involve me being dead. So far I've decided that I don't need a funeral plan, at the moment all of my plans are me surviving, because I will.

This life, this VHL life means you have these thought though. My daughter and I, while waiting for out karate lesson to start were discussing the possibility of her being a good kidney match, and she at her tender age is automatically willing to give me one of hers. And as she reminded me, she hates injections. I suspect very few people talk about organ donation, let alone to their own mother. I wonder if I'd accept it.

where anxiety lies

Back to work tomorrow and I am anxious. I always want the INSET to feel worthwhile, and I always start to slowly remember what I have to do in the term and how the list grows with each 'Happy New Year.'

I confessed to my husband last night that I was also worried about having grown more cancer or a new tumour, I'm finding it hard to shift that thought.
What is my back up plan?

Luckily for me I think it's a displacement and I'm not as worried as maybe I seem to be. He replied with a sensible question and we concluded I don't have any new symptoms so I should recognise it's probably more a worry about work, which I have more control over and whether I'm growing more bad things.

I'm lucky too that I have so many people who would help me and us if this life changes.

And so far I'm lucky that I have the NHS.

Each New Year I feel the same...

Although I'm being better at enjoying New Year. The resolutions seem futile... but I always think about the worst that might happen and try to shift it. I don't say it out loud very often.

Each year I hope I don't grow anything new or any of my current tumours stay put. 

This year I hope work gets better and we all remember the importance of the students and value our staff.

I am resolved to stay as positive as possible and not dwell on the potential risk of more kidney cancer diagnosed in July. That the growth is so slow I get to be checked in a years time.

That the niggling fear remains under control and I focus on now. 

my aunty

I got in from a meal on the top of a mountain and saw a message from my mum about my aunty. She doesn't have long. I cried, and the next morning heard she had died on Christmas Eve. My thoughts quickly floated to flights back and words left unsaid. They tripped into the fear I've had since the day I left, to someone I love leaving this earth while I'm so very far away I want to tell her what a wonderful person she was.

How she always showed me joy and positivity. She had her full share of tragedy but never once let that be a burden she imposed on others, not to my knowledge. She always laughed and smiled. Always hugged. My expectation of her is always one of joy and peace. She exuded an attitude of stepping forward, of today is this day. This is the right day. This is the only day you can rely on. I hope she knows what power that holds. What importance that gives, what an impression it leaves when you sometimes don't know what foot you should put first.  She was a matriarch of subtlety and I hope in my life I am able to show that strength.

I'll miss her greatly.