my friend...

A pal of mine is having brain surgery today. It's the 6 year anniversary that I was admitted into hospital for my second brain tumour. Somehow this has made me believe this is a good sign. The connection. 

She needs to make it through. 

I don't remember

I do.

I remember being so utterly helpless and so in need of someone to help me take a shit in a bed.

I remember only being able to piss a little bit at a time.

I remember being on my period and not being able to change my tampon or pad.

I remember not being able to feed myself.

I remember seeing the pity in their eyes

I remember the indifference in yours.

I remember being totally reliant on others, you. 

I won't ever forget. 

It's not ok that you don't remember. 

It's not ok to have forgotten.

It's not ok that you did it all so easily.

I don't want to be my dad.

I don't want to go through that again.

I don't want you to have found it so easy.

Then, a small glance of it. A moment where I got to care. We don't talk about it. 

I tell you I love you. I don't think you noticed.

I've walked away from a moment where I tried to connect, tried to get you to notice me. 

I often think we've lasted this long because you don't.  

There will always be a reason why I'm wrong. Why I didn't get it right. I'm used to it. I'll keep going. Probably because I do actually love you. You're really rather amazing and brilliant. I'm not the same as you. Never could be, never will be. 

Sometimes a new person sees me. 

Tonight you tried to laugh at that. It worked. I stopped myself being seen. That's ok, you worry that who I am isn't that great. You don't want me to embarrass myself. 

That's why I've hidden in the shower cubicle. That's why I'm only going to come out in a bit. That's why. 

happy birthday

It's been a hard week, I don't recall feeling this level of grief for a long time. When after his death it seemed easier. I think it's the feeling of being so impossibly far away from home. 

I've felt simply sad. 

stillness

It's the stillness I have here that makes it better for me I think.

Reflecting on my work like balance, seeing and hearing about the pace of the UK, the relentless pursuit of simply keeping up that schools have. There I felt guilt for staying still. For each break, for a moment to myself.

Not here. 

And that's how it should be. 

rare but treasure

It isn't often that I get to be useful in my experience of the medical world, but I could be tonight.

I got to say things that helped 

I wanted to give comfort and hope.

I think I did 

I'm evidence of survival and I'm evidence of being the watcher, and the watched. 

median age

49

So, about 6 years to go then. 

What should I do?

I know, live my life to the full. Maybe try and spend as much time with my daughter. Perhaps spend some time in another country, live life. Live Love Laugh.

And also... Be at the other end of that Bell curve... Love until I'm a healthy 90. 

the wood and the wire

Tonight I watched a new tribute to my dad.

It was beautiful.

It was real.

It was important. 

Belzutifan

Today on Facebook I saw that the drug belzutifan has been approved by the FDA.

I know it might be some time before it's approved by the UK, I know I might not be eligible to use it, but I hope so much that this means I can look forward to my life. A life that might not have so much surgery, one where I can take a tablet and avoid being cut open and all that that means. I'm crying, I feel like they're is a new layer of hope on my life.

I don't quite know what I'm feeling... Relief maybe, like a breath I've been holding can be let go. 

I know this is still just the beginning, how many times can you take it, is it permanent, will I find out I suspect. 

turning 43

I will turn 43 very soon. Closer to my desk by date. 10 to go. 

I've been on holiday and had a genuinely relaxing time. As we get closer to home the reality of work and real life has been creeping in. With that my dreams had changed. For the last few months I've dreamt my dad is still alive, I hug him and hold him. Confused by the diagnosis of death. Trying to figure out what we do 'legally' seeing as it's so patently obvious he's still alive. But the last two have been different. He's dead in those and I know it and I can't hold him. Maybe I'm just processing this. Maybe my mind wasn't ready to let go. I'm still not. I want to keep my chance to cuddle him. And properly, as it hurt him to squeeze too tight in the last years of his life. He couldn't really give me the huge hugs he did when I was younger. 

driving home for Christmas

Life can free so very different if you know you have a plan 

I'm hanging on the high hope of making it home for Christmas. 

I'm happy here, but I really feel I need to hold my mum. See my home without my dad in it. 

To know what I'm missing. 

To be really cold again. 

To then fly 'home'

is everything my dad?

I imagine that this is normal

Everything is my dad

scantastic

Great news, another 6 months. I don't trust it. Not in the way I would if it was the MRI the team, the same. But it'll do. Better then nothing at all.

And so here we go again. 

It's definitely rare to live like this. 

Recently people who know me have remarked on his well I cope. These are new people, but yes, good, I'm glad you noticed, yes, broadly I do. 

Here I am. 

Could I do it differently?

Yes.

I have and I could.

Should I? 

Time

Time

Time. 

I'm not as tolerant as I want to be

I'm feeling unnecessarily annoyed by the people around me panicking about getting their second vaccine.

It is about being able to travel in most cases. It doesn't feel like it's for good reason. 

And I'm trying to sort out a kidney scan and that is important. And so I'm grumpy and having to hide my irritation. 

The contrast of trying to get a medical thing... 

Humph

that footballer

Twitter seems full of people saying what an important reminder that a rich, physically fit white man collapsed in the middle of a match has reminded them what the important things in life are.

They really are sad and I'm glad they have had this prompt.

I assume he's doing a job he loves.

He had help instantly.

It nearly all disappeared before millions.

But why do you need this as a reminder. Keep your eyes and ears open and you'll see reasons to live life to the full everyday.

Is this a way to make reason out of the unexpected? 

Death here is frequent and unquestioned. 

planning a scan

I know that I'm due. My kidneys are on a 6month watch. I feel like I might be the one person who has remembered this. 

I'm having to have a big think about this one. I waited 'too long' last time but happily all was well. As well as it gets.

Now I have to think about what is worth me doing to get the next scan. What will it cost, where will I go? I don't know what my insurance will say. The last one felt like a bit of a once in a life time treat. 

Maybe not. Maybe I pay enough. Maybe.

What I do now is that it's playing on my mind. What is that cancer up to? 

Is it dormant, is it slow, should I get treatment? 

Questions with no answers. They are the most frustrating ones.

a day off

If I was in Norfolk right now I'd be busy. I'd be helping with the preparations. I'm not, I'm here. 

I'm taking my morning slowly. I decided not to go into work. 

I'm not very good at taking time off. I like working, I enjoy my job, but today I knew I needed to stop and be, feel all the things today. 

It's raining (highly unusual here) like the weather is caused by me and my mood. I'll know if that's true if the clouds break after I've said goodbye. 

Today I'm doing almost nothing this morning. I'm still in bed. I'm just letting this all be.

I'm remembering and feeling. 

My dad.

Always brought me a cup of tea on school mornings.

He took the dog got a walk.

He dressed well, had style.

Music meant a huge amount to him.

Best cook.

He never really complained. I don't remember him moaning. He didn't get cross about very much. He was more disappointed. 

He did art.

He was a teacher. 

Those who chose him as a friend loved his sense of humour. I must admit I didn't always get it. They induced a roll of the eyes and a groan from me more often than a laugh.

He was proud of me. 

He was up for an adventure.

He had great hats.

He liked Coventry football club.

He took on surgery like a fucking legend. 

I don't remember him ever really getting drunk. 

My god his curries were good. 

He was a solid, strong and quiet man who I will always love. 

He gave good advice. 

I feel lonely

 because, despite the love and care and the huge amount of support I am. 

My dad is dead, so is my brother. Just me with VHL. 

And of course there are others, but all mine have gone. 

Just me. 

Me. 

how brave will I be?

A friend sends me links to articles she thinks I will find interesting. I always do, this week she sent me one about a remarkable woman who had a spinal injury and what a amazing attitude she has and how well she is loving and living her life. 

I wondered if this was to remind me of how my dad lived his. I don't know if he loved it, he inspired so many people, apparently. Tributes coming in, what remarkable bravery, how wonderful he was... all that. I agree, of course. I thought at first it was her way of saying, "if you end up like your dad, you'll be good."

The tributes are really lovely, I enjoy reading them. 

I think everyone who has been in touch has told me how hard it must be being so far away. Yes, it is and yet it isn't. Honestly I'm getting on. That's what dad did, that's what I do. Everyone who has been through this kind of grief knows that it comes and goes, up and down, side and rounds about. Hits you when you don't expect it. I think that would be no different there than here. I'm also struck by how many people haven't mentioned that I might go the way he has gone, how many might be thinking it a little more acutely than they have for a while. I think about it often. I also worry about the bits of me that worked perfectly well for him that aren't for me. To be specific  - my kidneys. I bet only a very few worry about that. I don't remind them. 

outliving

My mum will often comment on the age she needed us to live to, older than her nephew who died at age 4. (I think)

When my brother died my milestone was 22, next came my dad's mum's age, which I guessed at, 30ish. Then the age was given as the median age, 53, so that one has become my next and now a new one to beat. 72. 

my VHL warrior

Our dad was kind, strong, stubborn and had a terrible sense of humour, one that, well after his hearing had begun to fade and his speech harder to understand he refused to give up on this. His favourite joke with us seemed to be hilariously pretending to run us over with his wheelchair, but with his less than perfect coordination, more often than not, this would mean a squashed foot or bashed leg. His grandchildren quickly learnt escape and dodge, sadly not so for Jo, me, my mum and often the dogs.

All three of us know his seemingly endless patience, most demonstrated when he taught us to drive. Dad was always willing to help us learn and grow and encourage us to follow our hearts, be that travel, people, careers.

The messages coming through highlight his level of generosity, his willingness to give and share. He loved to cook, thanks to mum. If she hadn’t tricked him into starting to cook when we were little children, we would have had to endure many of her creations. Dad’s meals were wonderful, except that that banana and cloves thing, his most memorable mistake. He adored searching for ingredients and making meals for friends and family, using most of a Saturday to prepare delicious curries or other recipes he had studied in his vast array of cookbooks.

He generously shared his love of music and he would serenade us from his room, playing guitar while us children were trying to get to sleep, sounds of Dylan and Elvis Costello helping me drift off in my safe sleep. He loved to perform and when Jo got married it was a privilege and joy for me and dad to sing for her, we practiced so hard and we spent hours working on the timing and phrasing, almost getting it right on the day.  Years later, I remember the pride I felt as I watched him host ‘The Wood and the Wire’, once again giving his time to gather people together to share and enjoy music they all loved.

He gave lifts, memorably to a lost man on a roundabout, who then ended up staying at our house for a night, my dad gently waking me with the cup of tea he gave me every school day morning saying,  “Don’t be alarmed but there is a French man in the kitchen”

Perhaps one of the best gifts he gave me was my determination to be a teacher. Getting the ferry across to Greenacre during school holidays, I knew that he was a great teacher. He gave up his time to take his students on camping trips, and we would go along,  the whole family and a selection of students, sitting round campfires, making up ghost stories for the walk through the haunted forest. And he gave his dignity more than once, a bath of beans or performing ‘I’ve got you babe’ to a hall full of children, all falling about at just how silly he and Keith were. He gave his knowledge, passing on wisdom and experience, I’m not sure if he helped or hindered generations of children with his mediocre French or if he confused or amused all those students who were falsely informed that the Acle Straight is a roman road, but like his dad before him he inspired so many, some who will have quietly let him know and many who didn’t.  When I embarked on my teacher training, he gave me lots of advice. One of the best being ‘Don’t ask your students to do anything if you don’t know why you’re asking’ And to this day and many to come, when I deliver training to new teachers this is my most important piece of advice, that and “a 5 minute detention has as much impact as a 30 minute one, so don’t punish yourself along with the child.” He had a gift with difficult students, some who I knew from school, who told me my dad was ‘alright.’ High praise from those who didn’t trust easily and so many other people had given up on.

He gave his love and time to his grandchildren, those near and my one, for the last few years very far away. A remembers fondly him allowing her to paint his nails and he kept it until it faded. Recently, with us being so far away I know he gave time after time, writing out emails and messages, so we could keep in touch. Carefully trying to type out memories and facts for her history project on her family.

He always gave me a realistic sense of just how strong we all are, through the hardest of times he reminded us, everything passes, the good and the bad. He gave me an inner strength and a true sense of hope and made me a true VHL warrior, as he was. He gave me permission to be frightened and at the same time he gave me the ability to face each scan, appointment and operation with the knowledge it would be ok.  

He gave anyone who needed it his time and his compassion. He was a good listener. No matter what, he was ready with support and love and never judgement. He took us as we were and loved us no matter what. J, mum and me have worked with so many disadvantaged and broken families over the years, we know the damage that can be done by lack of true love, but without question our dad loved us unconditionally and we fiercely love him back.

Thank you dad for all you gave us, I could have written pages more but mum said the service was only 45 minutes and it could be all from me.

 

his body

A VHL warrior the whole way and beyond. His body won't immediately save someone else. Not straight away, but maybe one day and maybe me. It's on its way to a research hospital and they were, so I'm told, respectfully delighted. The oldest VHL one they have had.

Good old dad. 

Larkin

 Today I am waiting to see if my dad dies. I think many people do this passively and I have for some years now. Today this waiting feels active, lively and very present. 

He didn't have a good night, my mum and sister were asked to consider if treatment should be withdrawn. he picked up, better blood pressure, better saturation, but not really awake. He has been close to the end before, once he in fact chose it and it didn't work. Since that time he has been quietly and doggedly determined to not let VHL win.  My sense was that he has insisted that his life, despite what others may think has value and he wants to live. There is a bitterness to this, an obvious frustration at the medical possibilities or, more accurately the lack of them. 

While I wait I guess,  I plan, I wonder, I think through the ways this might all go. It wouldn't surprise me if he fully pulls through, gets as better as is currently possible and gets back home. It wouldn't be a shock if he survives again, another almost medical miracle. 

but

Is today the day my dad dies and VHL claims his body more than it already has? No, because he never really let it win, he never allowed it to take some true parts of who he is.  And part of me feels a quiet sense that it won't be today, or this week, that his story isn't over. 

May be

There are always maybes. 

Right now, maybe he'll be ok

Maybe it's a blood clot, maybe not.

Maybe

what's wrong with your hands?

Why can't you catch?

"Oh, that's a long story" I replied

Then felt my face fill with tears and, not for the first time, couldn't stay on. Couldn't continue.

What was wrong with me? 

When the game is going well I love it, a member of a team, part of the success and failure. 

When I feel I'm being treated like I'm shit, I feel shit. The expectation of failing and dropping and my sense that I'm considered lazy.

Far from it.

I don't make excuses, I don't give up, usually. But today I ran off, I didn't stay for that. I couldn't play on.

What's wrong with your hands?

The truth might be...

Nothing

Something

Everything you can't see

All of the things... All of these possiblites 

I'm older then you

I'm just not very good

I give up when you wouldn't, because I don't fancy throwing myself to the ground

I have a variety of invisible disabilities that make this really hard for me and I keep trying, when you include me, when you give me a chance, when you don't make me feel like I'm worthless, when you don't patronise me, when you see my effort not my skill, when you are kind

Yes. I felt those things. I pulled it together and went back on

I stood my ground

I scored

I found space

I got angry

I said, I'm not throwing it behind me

I carried on

And I got home and cried some more

I'm strong but this pulls me apart it's got to be real because the tears are. 

Last time I stopped going because I didn't like feeling like that week after week. 

What should I do? 

freedom

This morning I woke up in a lazy mood, I was simply thinking about the fact I don't have to do anything today. We are away and me and my little family are just together, simply and happily. 

It feels so good.

Despite this, a little trickle of fear began to creep in. Invasive thoughts about my body, my health, my time. I'm good at pushing this to the side and now, cup of tea in hand, beautiful view and gentle sun I'm breathing deeply and letting the waves in the shore wash it as far away as it can go. 

Live for now, be, don't let scan worries get in the way.

I'm going to leave them on this page today. 

I'm going to enjoy a good book and lots of tea and cuddles. 

That's my plan. 

hearing no

 I had a moment, suddenly seeing something I have read about and always thought, how could anyone do that, I don't understand. 

It was about consent and it was a young girl. A friend was leaving and as a gesture of kindness the father of the little girl, suggested she give this man, a man she knows and as far as I am aware likes, a goodbye kiss and cuddle. She didn't want to. Her father seemed annoyed, she should do this. She didn't want to. I suggested a very loving hand shake, my third glass of wine of the avenging warming my courage. Not only was I ignored but the father picked up his daughter, taking away her free will and placed her into the man's lap. She squirmed and wriggled, he hadn't heard the pervious exchange, and surprised by a child suddenly in his lap, he laughed. She called out "no". 

I called out, loud so she and he would hear, loud to show I got it, loud to help her, loud so my daughter, next to me saw me act, heard me do what I say we should all do. 

"Ah well, no means no, right!" the man, my friend, quickly, gently placed her on the ground, expecting nothing more from her. Her father was cross, and to distract he pushed forward his son, slightly older and he was instructed to give that handshake. 

I was stunned and worried - my daughter was as shocked as me and pleased I had said something. 

There, here, we saw it. It happens so easily, so quickly the lines of society tell woman you are an object to be give, your voice doesn't matter. I hope she heard me. 

jab

It was a strange way it happened, so typical of here. A message from a friend, a tip off and a lift. A hurriedly scrawled sign and a tent full of people. Many familiar faces and a sense of uncertainty, smiles behind masks and a nervous energy surrounding us. No idea what queue to start with and eventually we learnt what to do. Within an hour it was all done. Card signed and arm jabbed. 

The first step taken. 

today is the day

 forever burned onto my soul, the day we switched him off, the day he died in body and I pray only that. I hope that three days earlier he had already said goodbye and gone. This mild haunting of my subconscious that I know its' sensible to listen to but on this day it lies there and gnaws at me. 

The man he was wouldn't want me to feel anything but love, of that I am certain. 

Marching through March

 The month of death. And although each year it has blissfully stayed just two people... one i knew and loved, one I had hoped to, it really does feel like a shitty month. 

I'll hope again this year no one gets added to the list, 

Lucky to have time to say goodbye

 Another live streamed funeral today. It is becoming an art for some and not so much for others. It is important to say goodbye and to know that you are part of a collective love for someone. 

At least we all have time to say goodbye, and each one personal and meaningful. That is a gift in itself, to be able to have that time. Even if it is miles away and we can't have a proper knees up - I'll raise a glass tonight. 

he's another year older

 this year I felt very far from home. There isn't much you can say after so long, but knowing I don't know him anymore and forgetting the small things I once knew made him feel very far away. 

Was it Queen Mary?

Was he in his first or second year when he came home unexpectedly?

I do remember walking past him on his way up the road when he was supposed to be in London. 

My big brother, forever young. 

distracted by greif

I burnt my hand.

I knew I would.

It's often described as shaken, the news shook me. I took more Hydrocortisone. 

I called him my uncle. Until I was 20 I didn't really know who he was. He was one of the cousins that my mum had. He was at that point my mum's cousin. He knew my brother so he mattered. He had memories of Conrad that I wanted 

Then fallen through flat in London and my mum asking for a favour, it was from her, his cheeky little cousin.

And without really knowing it was such a significant relationship, there I was, moving in 

Living with someone is a way of being close that you can't do any other way.

His wife is a fantastic cook. I was fatter in that time of my life more than any other  

I felt loved, protected and secure. And anyone who has begun teaching will know what a confidence rollercoaster it is. Home from home. Unconditional space. What a gift they both gave. 

I thought I was an adult and technically I was but I was fresh into the chapter. These were the days of good red wine and the best lamb shank you would ever taste. He didn't cook!

I treasure these memories. A true home from home. A transition that I needed more than I could explain then and even now.

I moved out because they had done the job, once again of looking after a Doherty child. Hearts the size of planets without a seconds thought of getting something from it. A generosity of spirit that I do my best to emulate. 

This was just my first chapter.

gifts make memories

 I'm not very good at buying gifts. I try but I over think some, under think others, am often crippled by the need for it to be useful, good, mean something. I suspect I'm not alone in this. 

I've been noticing gift giving, surprise gifts and the joy it gives those who give. A few months ago I gave my friend a pen, an ordinary pen but the moment and the reason meant a lot to her. And I've smiled at the intention to give a bottle of wine, not from me or to me, but somehow it was for me. 

This week I put on a necklace that my friend bought me before I left for a new life, it makes me think of her every time I see it, hold it. I folded the pyjamas that a group of wonderful friends (name of our WhatsApp group) bought me when I got out of hospital after my second and more troublesome brain tumour. The earrings that work colleagues gave me to say goodbye, the soap I wash my hands with and everyday I see a flag that was bought for my daughter which meant the world to her. These and many more gifts surround me and remind me of the love that surrounds me. 

a full bin

 There are moments when you realise that the mundane is such a joyous blessing. Because I tested positive for COVID but my husband and daughter did not I'm in a mini bubble in my own home and from my own family. 

My husband is sleeping in the camper van (a Bongo Friendly - for those of you who know about these things) We are lucky enough to have two bathrooms, one for them and one for me. We aren't touching, I'm not kissing her goodnight I'm not lying on her bed and I'm not getting any cuddles. Yesterday we held hands through a blanket, a risk we were willing to take. 

This morning my husband walked determinedly from the bathroom he now uses with a full bin in his hand, the lid not quite able to shut. She grumbled about this and explained bin etiquette to our daughter. Until now someone else has emptied the bin before it overflows. We exchanged a look. We carried on watching a TV show while he emptied the bin. 

Being a family is about this and I am so very lucky to have it all. I'm so lucky COVID seems to be a harmless virus to me. I'm so lucky. 

A seasoned self isolator

 having spent many a week or two or more in hospital I'm very used to my life suddenly reducing to the size of a small room, ward, hospital. 

I know the joy of stepping out and away. I've done it 8 times, not all VHL related but all important. There are the ones that hold real significance, the first one was following the same operation my brother had, he never walked again, he left in a box. That meant so much, driving back along the familiar roads from Cambridge to Norfolk, knowing my fate was different and not really knowing how I would use such responsibility. 

The next was a trip to an MRI scanner, as we approached the lift, my body too weak to make the short journey by foot, I was suddenly overtaken by an overwhelming sense of survival, renewed hope and joy and I cried. 

The last time, there were two moments, the first was breathing in the cold fresh air of central London, having been in an airconditioned and temperature controlled environment for over a month. The darkness was so welcome, a lack of the electric light, the sounds of traffic and people not there to care for you.  And then walking through my front door and into the arms of my daughter, the hug of my life, the sheer relief gushed from me, I shuddered with it, unable to contain the waves of release, of another day I've survived, I wonder if that's what returning from war feels like.  

Considering all that my two weeks in my home self isolating because I'm infectious to others and fine in myself seems like a non-memory. I'm home, I'm working and I have a beautiful garden. One week to go and the first place I'll go to will be the test centre - just in case. Then I suspect my next stop will be the office! 

Being one of the stats

 I tested positive for covid, I join the millions, billions of people who have. I feel a little fraudulent though, a slight tickle in my throat and that's it. I feel guilty, spreading it as I will most likely have done. I have only been near my family since I thought there was a risk. 

I'm also feeling relieved. Because so far I am totally fine, I was worried, what with all the VHL, the missing adrenal glands, the other stuff. The need for hydrocortisone, the memory of my dad well over 25 years ago when he caught flu. He was so ill and that was when he was healthy. My Drs have trained me well in 'sick day rules' a phrase you probably only know if you are someone who takes medication to stay alive. I have doubled up, even though I feel well. It won't do me any harm and will help cushion anything that might be lurking ready to mess me up. I have an up-to-date injection. 

What has been simply lovely is how many people have sent me supportive messages and made me feel so completely loved and cared for. I think those that know my disease well had the same fears and worries that I had. I know I am surrounded near and far by love and positive energy, and I believe that makes such a difference. I'm one lucky woman. 

The honeymoon of post scan results

 I make the same health promise to myself quite often, I've done it for a large part of my adult life and at times I actually commit and carry it out. 

Around September I made one of these resolutions for my fitness and began by using a rather helpful app and have built up to 5 workouts a week, now at about 40mins each. This really is the most I've done for about 14 years (the last time I got proper fit I then got pregnant)

And I'm drying out over January, one week and a bit down, even with a very hard first week back at work 

Why the preamble? 

Well, My legs are looking good, my knee hurts and I really should see a physiotherapist, but I'm not sleeping any better and my tummy is a big bloated ball of gas and I'm feeling a bit miffed that I don't yet look like my very healthy, and much young 28 year old self. I was expecting to feel and look 28. The good thing is, I know that what ever is going on with my reluctant bowels, it isn't a tumour. So that's a nice missing layer of anxiety. It won't last long, give me a couple of months and I'll be able to think, well one could have grown. 

2021, hi, how are you?

 Nearly the end of the holiday, it's felt long and mostly restful, I felt profound yesterday but didn't get round to recording my thoughts, but now I come to type I'm left with a simple wish, let 2021 be better than the one before, for everyone and can we please all learn from this. Please. 

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.

it was the night before...

1999.

I sat on a sofa with my sister in a room I knew well.

We were holding hands and contemplating the New Year. We sat in silence for quite some time. 

Time.

2000 was the year of my first craniotomy. We both knew what that might mean.

The night before 2020 is fast approaching and I am hoping it's a clear year.

For me and my family that means no operations, no deaths, no growth and nothing new.

Could we hope for a whole decade?

We always hope. 

I can see a million stars

It's almost the end of 2019.

Time keeps fighting me.

But here I am counting a million stars and knowing what joy is.

I'm one of the privileged million, billion or more.

I don't deserve it. But I am it.

Here and now, luckier than most of the planet.

What absolute bliss. Even the richest person on earth can't continuously feel this. 

The stars keep up with me tonight and if only time could stand still, just a little longer. Here and now.

Now.

Here.

The beginning of the end

For people like me, those of us with a preexisting medical condition the result of the general election was not only sad and disappointing, it was a moment of genuine fear.

We rely so heavily on the NHS and despite it straining at the seams and the waits, the delays and the under staffing, it is ours and it saves our lives.

It has saved my life in the big obvious ways and in the small ways too.

What will become of it now and then us... the first to go I suspect.

First they came for our boarders and I did nothing because I was a native
Then they came for our NHS and I did nothing because I was healthy
Then they came for our schools and I did nothing because I was confident in my children's success
Then they came for me there was nothing left to take

End of term and time for family

It is going to be a relaxing break, we have plans to wander and roam and I know we are going to rejuvenate and cherish this time.

Our Christmas tree is up and presents sit happily underneath.

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.