hydrocortison

 Humph

I need more than I brought with me and it's very annoying. In Malawi I can just go and buy it. I don't think this is necessary, in the grand scheme of  things, a good thing, but my goodness I wish I could go and get some that way now.

I've considered halving my dose so it will just about last. That, of course is not a good idea. 

Humph 

flying home

I keep having to remind myself this is real. It doesn't feel it. Like a crap prank. I don't know if I believe this is happening and try, it really is. 

Each moment a little bit closer to that big change. If I get the job I know I'll deserve it. I'm essentially applying for the same job I went for 9 years ago, when I knew nothing! 

I know so much more now. 

Genetic lesson in ethics

 There are moments in your life that hit harder than others and then, like any other kind of grief, it tends to fade or at least hits less often. 

This week I again talked to a A-level biology class about my life with VHL. The starter for this lesson is essentially a similar genetic profile to me and the students are looking at the ethics of genetics. I've talked about it before, but the teacher and I have this routine down now. We are a great team. I'm also surprised that 4 years on and several versions of this lesson and they are still always so surprised when I reveal I have VHL. I'm the person they advised that couple not to try for. the disease sounds so awful. And that the girl they know, my daughter was a surprise and 'happiest day of my life wasn't when she was born but when we found out she didn't have VHL' 

Classes obviously don't really talk about it out of the room. But I know from those students who I talked to later on it had a significant impact. One boy telling his mum (who then told me) he's going to go into genetic to find a cure. 

And thanks to a scan they also get to look inside my body. They have hard copies of my abdominal MRI. 

I am a teaching tool. 

Why moments hit hard is that of late I've been thinking about that nasty brain tumour, it hit hard. It was the worst and I stood in front of them realising I am past the main fear. I'm coping well and I am more optimistic. Yes today when I had a sharp pain in my head I suddenly let myself quietly freak out. I was doing a poo. My dad was diagnosed with one of his brain tumours because he reported pain when did did a poo. And just for a moment I drifted back to the room and the weeks of fear and utter hideous dizziness. 

whiskey

I'm watching a zombie apocalypse series. I don't like them. I don't like to think how easily so many people you know and probably love could turn and eat you. 

But what strikes me this evening is good well off the survivors seem to be. They have food and water, a roof over their heads. They seem to have a change of clothes. They also had a fair amount of whiskey. 

They had loss, naturally but here, where I am now this isn't fiction and they don't have this much. Cholera is killing people so much more than COVID ever did. Poverty kills even more than that every day 

It's hard to sympathize when the people in the film are in a better situation than the man I didn't buy a pineapple off today.

I'm not a good person 

prediction

 someone I know and respect has begun to read this blog. Exciting and a little unnerving. In response to his comment via email I  thought, well I should read those ones again as, understandably I can't remember what I wrote. And I kept reading, enjoying the memories and reflecting on them and then I see one about my dad and his wobbliness. 

At the time I had simply written that he probably had another 15 years in him. I was kinda spot on. 15 years. good guess hey. 

My little girl is 15 and a half. How many years do I predict for myself? Not my life expectancy. How many does she need? I know that we are making this move, partly to give her a step towards better independence. This week she asked if I would sleep in her bed with her. She didn't want to be alone. I obliged. I know what it means to be able to be there for her, emotionally and physically. 

we have a couple of secret messages we share, I of course won't say what they are but they are proof that we are who we are. No alien invasion. I have the same with my mum. we used it often. She would ask me them when I awoke from an operation. Imagine that, my mum checking I hadn't been replaced by a science experiment. 

I know that's not what that was. I have passed this onto my one. I'll be me always, we have our code. if there is an after life and I get shunted back to her I will be able to prove I'm me. A bit like 'ditto' in the film Ghost. It is ours. 

nope - not telling 

when you're sphished

This evening I'm shpishhed

It is fun

It is ok

It is fun

didn't bother

I went to bed early, I didn't bother with it. I am feeling low and worried about the year ahead. I haven't been able to book my MRI here and all I see when I look on the various types of media is the NHS crashing to the ground. 

I will probably have to book a trip to SA to get it done. I don't want to do that. 

I woke up several times in the night. The worries of the year ahead looming large. 

I have a list of what ifs I can't seem to shake. 

But I'm lucky enough to have rolled over to my husband and I told him and I cried. And he understood. I know that overall we'll be fine. We just will. White privilege and a healthy dose of affluent parents. But I'm just feeling so gloomy about 2023. 

We're leaving our safe haven and our escape from the harsh reality of all that the UK holds. 

I know I'm bored quite often, but I've had so many years of craving that, I'm not going to let it go easily. 

I also need to see a dentist. 

Urgh. 

Those comments from that man

I have been very troubled by JCs writing in The Sun. I immediately got the GoT reference. And that's because I found that scene one of the most disturbing moments of TV I had seen. There are others, usually a rape scene, done all too well. Those and that scene, her walking having just had her hair roughly cut and stripped naked, paraded in that way made my stomach turn. It still haunts me, when I recall it, accidently or because it is presented, I feel a visceral unease. It was deeply unpleasant and although fiction I felt it summed up so much about hatred thrown at women. How we must be punished for doing what men do. thinking of it makes me feel vulnerable and afraid. It felt all too real and very possible, because this happens to women, metaphorically and physically. 

For him to reference it and for that to be being used as an excuse has made me physically angry. I am appalled by it. Horrified it was allowed to be put into the public domain and all for money. It will have caused more men and sadly women to believe this level of hatred and violence is not only acceptable but normal. It will have validated many with whom misogyny is part of their every day, and may well have concreted the rationale for such a mindset for many more.

I am grateful to every person who has been as angry about it as me and has spoken out, including his daughter and I am in disbelief at anyone who can defend his words or the paper for allowing it to go to print. One prominent Headteacher and I think behaviour tzar has tried to minimise this. I have no respect for that view and cannot fathom why she waded in. I have seen girls come to school distress at their hair being cut as a punishment, I have talked to girls and women for whom being stripped has been used as a punishment, I have known the fear of just the threat of if can produce. How can anyone minimise the intent behind those words. 

how much to declare

 I'm applying for jobs. There is always the confidential section. Last time I was applying in the UK I ended up having to disclose to the HR department. I'm not sure if I do need to do that. 

What if I get a job and then, within quick succession I need an operation. Currently my situation is stable but I know that kidney one is near needing something doing. Could even be now, could even be before, could still be a few years. If I have stuff done over the summer break I could even be in out and done before anyone would even know. 

There I go, thinking through it all, over thinking, and then I wonder. How, when you don't know me, would you take it. 

Do I say - oh and just as a final thought, I have a disease which probably won't be an issue but I do, well sort of have cancer. 

not VHL a different disability

I recently explained to teacher

'if you're dyslexic, it's always about dyslexia.'

I don't know if he got it. 

I'm high functioning. The most obvious part to those I work with is my spelling. Some people don't get it.

Tying my laces 

Reading the time from a clock

Remembering a short conversation

Time

Timetable

All sorts... If you don't get it, you don't see it. 

If you don't get it you don't see how much we adapt and learn ways to thrive

being with fellow know how it is peeps

 I had pizza with a pal last night who just gets it. She and I both have a disease that means results day is always more of a  - can I live my next 6months roughly the same as I just have or maybe a bit better?

I am going to miss being there for her face to face and I'm going to miss her laugh. She laughs with her whole self. 

What's great is that we do still find ways to laugh and it means the world to me.

cat's out the bag

 the news that we are leaving hasn't gone down well. Which is nice. Some tears and some expressions of sadness. Not all mine 

Perfect day

 toady I got up and made myself a cup of tea, and then I finished a jigsaw, made a fried egg sandwich and then did a bit of tidying up. I sorted the water and  brushed my teeth. I looked at social media and posted about why  today mattered. I had a cuppa with a friend, I worked on some stuff and made myself a crumpet with marmite (a real treat) I helped my daughter with an application and I kissed my husband. I planted some seeds and planted out some seedlings. I washed up, twice, maybe three times if you count the little bit in between. I walked around and I smiled. I contacted friends and I watched something on Netflix. I made dinner for my family. I had a bath and scrubbed my skin and washed my hair. I'm typing this now, still smiling. 

A perfect day because I'm living it, unaided and full of gratitude to all the people who made sure I am here. It's my 7 year craniversary. I don't remember the date of my first brain tumour operation. I know that one was in January. I saved the date of this one. It really was a frightening time. I went into that operating theatre not knowing how I would come out, who I would be, even if I'd be alive. Not the first time, but this time, I wasn't sure if I wanted to be alive at the end if I was going to stay the woman who couldn't move for fear of the consequences, who would have given up completely if it had been possible just a few days before, a thinner version of the person who had been admitted 3 weeks before, a person who wasn't sure if she liked herself. 

And so today I'm allowing myself to be happy as I do most days now. I'm lucky. 

off to church

 to go with my mum, it's not a place I feel I belong anymore. I get it and I am grateful for what the church, and by that I mean some of its people, have given me over the years. 

I still pray and I still feel a connection but I don't know if that's ingrained habit or faith and perhaps both. 

I am saying thank you today and asking for guidance. 

near to all clear

 the simplicity of it

all stable... the best news someone with VHL can get I think

the immediate telling to all the folks I know care... and then I wonder how much I should share. I'm rare. I told twitter. I thought I might be able to build more of a community on there - not so much. Be told not to minimise and misunderstood at times. I don't think they see more than the snapshot  - much like some people in my real life. 

And of course today some of that crash you feel after the 'good news' The letting go of the tension you hadn't fully realised you had been holding onto. 

And then... well then the next scan right... in less than 6 months this time because I had to wait so long for this 'as near to all clear' as I get 

My daughter asked me this morning 'what would you do if they told you it had all gone?' 

'get them to check again.' 

how many times do I talk about waiting

 I am good at it, distracting myself but my goodness this wait is very long. Scan in July and still no definite answers and information. 

I feel like I'll be due another scan before I know what this one really means. Hoping it's not 'a little bit late' by then. 

I'm a really good person

You know when you just think... Now despite my doubt, despite my faults l, despite my fear

Actually

I'm, like so many people I surround myself with, I'm a really good person.

I'm not perfect

And that's the proof 

building and trying to ignore the worry

 the scan... the size and the 'lots of white on that' feeling. 

the disc was sent off a little under a week ago. When will I hear, when will I know? 

and then... what will it mean? 

I hurt myself the other weekend, I hit my right side on a shelf, it hurts, it's getting better. I have had to talk myself out of deciding I've done permanent damage. Popped the cyst! 

It's on my mind. 

3am worries

 I gave my physical scans to one of our biology teachers, we held them up to the light to see what they looked like. 

'That bit' I pointed to the large vivid white circle where an adrenal gland probably used to be - 'that would be the...' I stopped, I didn't know what to call it. cyst, tumour, cancer, so I mumbled a little and talked about MRI scans and contrast. I couldn't remember 

gladioli - no, gladiminium, errmm, 

it's this Gadolinium contrast 

I of course then couldn't really get the blob, not the only one either - out of my mind. A ticking clock, definitely growing but maybe not bad stuff growing. I wish I was an expert. 

The wrong time to decide

 this is a place where I have been so very happy, a place that feels like it saved me. I had a really good chat with one of my favourite people yesterday and she knows me so well. We are torn, we are undecided, but I think maybe it is time for the next step. 

I worry that what has kept me so healthy and well is this place, the air, the lifestyle, the calm. I just don't feel as stressed, even when we face turmoil over COVID, staff issues, devaluation, none of it gets into my bones like it did in London. 

The chat helped me reflected on what it was about London and the truth is I haven't meant London, I've meant my last job. A place that I at first thrived in and then almost drowned in. I never gave myself the chance to say just how horrific the brain tumour was, just how terrible that small and endless month of hospital was, how I wanted to ruin my own life, all that made me feel safe because then I was in control of the disaster and yet, in the end what we did together was make a big change. It needed to be big.

Maybe now is the right time to acknowledge that we need to see how we fair in the real world. Maybe make some choices on how we live again. Maybe. 

I'm torn. 

More cancer - not mine

 I see her as a reflection of my story in some ways. We met at an NCT group, our children just weeks in age apart. they still laugh and play together now, even if it is on Minecraft and 8000km apart. 

She had a brain tumour removed not that long ago and has just had emergency surgery to remove cancer in her bowel. 

It is perhaps what my story could have looked like if I'd been the first in my family. But because I'm not, because of that clever Dr, who asked my dad the right questions and joined the dots, I get scanned and screened. I get to find out slowly and before (usually) it gets too dangerous. I have the luxury of waiting and not always knowing but at least I do. 

I want to wrap her in my arms and tell her it's all going to be ok, and it has to be, for her and for her boy. They got most of it. She'll do chemo. She is one tough cookie. I wish she didn't have to be. 

So I will wait - happily lucky that I get to

Thank you VHL alliance

 I waited until I was back from my holiday, despite the temptation, to ask for the scan report. It came back within the hour. That was impressive. I read it and compared it to the last full report I have. 

Then I had a little wobble. 

I sent the report onto my Prof's secretary, with the sing song tone that says - I don't want to bother you but I want you to look. And I got a reply within the hour. Not an answer but I know I've been acknowledged and now I will have to wait. I can do that.

Then I had a little cry and got a hug from my husband. We talked it through, best to wait. The report didn't seem very thorough, the MRI machine wasn't as high a T number as the others, they could be looking from a different angle. I quickly calculated a thousand different outcomes, the best being  - we can still wait and the worst - well... going back to the fear I felt in 2013. I even began to think of the cost of more scans. Would my insurance cover it? I have savings - I can use those. When would be a good time of year for surgery. Then my calm husband held me again. Breath and just wait. 

I thought about telling my mum  - but she worries and I don't want her to, so I looked again at the report. And did a bit of googling, before finding my way to the place on the internet I should have started with! 

Kidney Cysts, Renal Cell Carcinoma : VHL Alliance

this bit

Cysts are generally not considered sufficient cause to operate, even if large. In the rare event a tumor is present in the wall of a cyst, it will be important to watch the size of that solid tumor, not of the cyst.

and this bit helped 

Tumors typically grow in steps, with periods of little to no growth followed by periods of rapid growth. Looking at tumor growth over a number of years, NIH has found the average growth rate is 3-4 mm per year. Generally, growth greater than 5 mm over a year is considered accelerated.

and so the left one has gone from 13 x 12 mm to  29 x 23 mm cystic lesion

no news on the right one

I'll wait

just wait

scan connoisseur

I know a few MRI machines well, one I consider I've had an on going long term relationship with, although I have been seeing his brother on the side. I've had a couple of one night stands with some, holiday flings really. 

And then there's the first, you never forget your first. In my home town. He was new to the area, my family knew him. I haven't seen him for years. 

long life milk

Living somewhere else is about accepting long life milk

where will I be scanned next

 Who knows, looking unlikely that it will be here. But I do need to have my 6month one. 

I know I do, but only to ease my mind, I'm sure of that. 

Today, I sat in my pjs with my husband and friend and we were talking about life's path. I have lived a very full and happy one but I still see a long future. I think that is why I feel frustrated by a small hiccup in the road. Very small, it will resolve but it occurred to me that asking me to wait for something I want isn't a good idea. It's not so much that I'm running out of time and more I need to use my time. I don't like being bored. I have been happy to slow down these last few years, take things as a pace which has helped me connect with my daughter and get to know different sides to my self and others. But I'm restless now, I need another thing and I don't want that to be VHL related. 

In a different world

 An old friend's wife died yesterday, she was young and had been told 10 years ago she was probably going to die of cancer. She was remarkable to keep going, I only ever saw her brave face. I suspect her husband and son saw many more faces. I wonder if she had days when she would cry in the shower, scream why me, get angry at the universe, lie awake terrified of leaving her son behind. I expect so. I live knowing that I'm being monitored and I've come to a sensible realisation that this isn't the same terminal as she faced, just life limiting. 

Just. 

I don't know how they did it, but they kept on hoping and kept on. 

Now her husband and son need to learn how to live without her and that's what breaks my heart. 

once I couldn't keep my eyes open

I remember it well.

You don't forget that

There are moments in life when you want people to do you justice... Today I hope I did that. For others. It matters

oh your dad died too

There is a club I belong to. Newish to me. The dead dad club. I understand it's not the same as the dead mum, brother, sister, friend, child club. 

It's still a thing, an unexpected one, although I knew it all. I thought I did. Yesterday someone I know, not quite a friend more than an acquaintance, joine to the dead dad club. 

I sent my habitual concern

What I'm waiting for is the next one

blossom

In my garden a tree that I don't normally notice is blossoming. It's subtle and beautiful. 

It's making me think of VHL. I'm not sure why. Maybe the unexpected growth. Maybe the sense of dormancy and new spark. It's the way it's snuck in, almost unnoticed. 

It's a clever disease and I need to remember to keep watching. I need to check in. I need to keep looking for the changes. 

And while I do, notice the beauty. 

silence me

I've been told I talk too much

Often

I've been silenced more.

I've been told I over share

Often

I've hidden so much more

I've been told I over react

Often

I've been restrained more

who knows where the time goes

If I'd been able to, that would have been the song at your funeral.

Because, because it's the first one we really learnt together, we sang it at my sister's first wedding.

We played it many times again and I can even almost play it on my guitar. The one you gave me that sits here... That'll have always.

This song means so much

This song reminds me of your soft gentle reassurance that all will be well. Even when they just weren't, you didn't let me see that. 

I miss you

I didn't know I would miss you this much

I'm looking out over a cloud covered sky, listening to waves crash into the side of the room I'm in, the beauty and power a welcome reminder of how blessed I am. I'm in a little bit of pain and I just offered a small request up. I call on those who should be 'up there' knowing that if they can they would definitely help. And I remember that my dad is now there too. I'm not used to him being on the list, nearly a year on. So I ask him. Then I do my superstition of, oh but wait, what if he's only allowed to help a little bit. I should save this for some bigger stuff. 

And then I think of his suffering, he just didn't really complain or burden me with it. I didn't know really, except of course we did. And that soft layer of missing him bubbles up and I feel sad. I want to just check in on him. My dad. Gone. 

pain in the arse

It is getting better. Healing. A slow process when you are going through it and every so fast on reflection. 

This time, a break is a time to rest and sleep. I'm happy with myself for managing lent so far. It's been interesting to have been battling with my body though. It's not behaving as I'd hoped. 

My arse, my armpit and my finger. 

But I was reminded yesterday by someone I hope dear, that it's not fighting me as much as it could. We've had rougher patches. 

She's going through a battle with her body and she doesn't know what and who she can trust. It reminded me of those times I haven't known if it's all really real. When the cure feels worse than the disease. The lack of pain or disability but to be told... 

It's time. Time to cut you open, time to intervene and stop it. Time to take the risk. Time to sign the yellow paper. 

my bum hurts

VHL sucks, I'm glad I get scanned, but I know I'm happy to put them off, until the doubt gets in.

This week however I have a non VHL related medical issue that I'm living with and it's nasty. So I've self diagnosed, self medicated and now I'm at the, why don't you just go to a Dr stage in my head and then quietly and stubbornly replying; I don't want to be in a hospital. It can wait, it will sort itself out soon. 

The fact I can't sit down for the pain should be shutting that other voice up. Nope. It wins. E v e r y time. 

Same with my current broken finger which looks odd... I just don't do Drs unless I have to.

Ummm... What is have to? 

spring and winter

It's that time of year. In the UK the sun is making more of an effort and here is raining, lots. Here the nights draw in, as much as they can. 

Here feels right and I can't quite imagine not being here. I'm needed and I'm fulfilling a role I love. 

It's that time of year when I wonder more about my brother. I don't have the same questions of my dad. 

I have the questions of me.

I usually say if I become a Head Teacher. I've been trying out saying, when.

My husband sees that potential and I think I do too. 

Some decisions to make.

happy birthday

Each time, each time, each time for so many times. 

I wonder and I know there's no point

But I wonder

seeing your mum again

I was telling my friend Tabitha about my mum and how wonderful it was to see her happy because she was doing what she does best .. helping the vulnerable. Those who don't know how to use their voice. The people who are scared, or scared - are those two words spelt the same? 

I'm not quite sure why I mentioned her age, but she lit up. She didn't know that my mum is 70. It was like she saw a future she didn't know could exist. 

My mum inspired her.

My mum inspires me, I'm so proud to call her my mum. 

I hope she keeps making a difference because that's what she was born to do. And in my own way I'm following in her footsteps. 

My dad was an inspiration too, he kinda had no choice. I was worried I might have lost my mum to his illness. I think we nearly did. But I see her again. I see her recover. I see her finding herself again, after many years being a person who she was obligated to be. 

The joy of joy 

Welcome back mum

the good news

The journey, not the destination. I'm certainly always on one. The twists and turns. Right now I'm back in a lovely bit of road, it's pleasant enough, no real bumps to speak of.

So this next 6 months is as set as it ever can be. It's what I needed to hear. It's been a stressful year and I needed to know the magic of Malawi isn't the only reason I'm safe, maybe for a little while longer. 

VHL isn't what's going to cause the bumps for a while. I hope

it's probably nothing

Sat on a toilet.

Common I think.

Here I am taking it all in to make sure I can face my baby girl.

"Prof wants to see you face to face" 

It'll be my eye

It'll be something

Maybe nothing

Can it wait?

Am I over reacting?

Can VHL wait a bit longer?

I know I've had a good break... Eyes are so good when they work. 

Maybe I need to go home

Maybe it's time to face reality again

And I'm in the toilet for two reasons.

1 + the email shocked me and I took a sharp intake of breath and that starts me coughing and that starts me sneezing and that takes a while to stop. So I need to blow my nose and have a wee

2 - I'm protecting her. 

Should I be?

It's probably nothing

Home and a cushion

We made it home in one piece, the unpacking began, I always do it before I sit down. We have one bag missing but happily it is one that only has stuff and things. Nothing meaningful.

Never before have I travelled with such important cargo. Not counting my living family.

Now, in my room are memories of my dad and a little bit of him. They surround me physically in a way he does in my memories. Now I see him each morning. He's visiting and staying with us a while. 

It's important. 

I didn't realise just how important.

There is a faint smell of him from the aftershave my nephew sprayed on the T-shirt that my big sister had made into a cushion. 

I've said goodbye to him at my childhood home and welcomed him into my new and for now home. 

I'll show him my garden.

I'll see if he has any advice on my tomatoes.

all of the reasons home is harder

We've now done all the 'homes' 

They are all harder than would be ideal

They all have people

They all make more sense when you're away

They are all are filled with past and memories

They are all harder

familiar chairs, unfamiliar faces

I'm sitting in the yellow chairs of the imagining department. It's been like this for a while, the changes and improvements continue. This place holds a lot of memories for me. 

I've been coming here for so long, for me and for my dad. They always ask after him on the ward, so I'm glad I'm not going there today. But who is left to ask, maybe a couple of the nursing team. If Prof Drake was in, maybe him. He won't be. It's not a clinic day. It's a scan. 

My full scan.

How lucky I am. It's the back bone of our country. I'm sad and angry knowing what the government are doing to it. 

Will it always be here?

I'm feeling nervous, unsettled and unsure. I feel cheeky to be getting the scan and also relieved. 

But I normally build up to this. I was caught off guard. And I don't know when I get the results... What will they say, what will the next year hold? Are my kidneys going to be ok this time, has anything new and dangerous begun, are the old and previously faithful ones behaving? 

Who knows.

Not me of course. 

Not yet. 

winter is different

I'm looking at one of the fastest pigeons I've ever seen. I have on a hat and scarf to begin to warm up for a walk in the grey cold air of my home town. 

This place, my home, my land is different and more than ever before. Changed forever because he's not here. His room is cosy and comfortable and he's not here. My mum has done a great job of making it feel full, but it's of course empty, unless we're all in it, filling it with jokes and laughs, which we've been trying to do. 

it's raining

Here in the heat of Africa's warm heart I'm watching the long awaited rain begin to fall. It's been almost a month since there was any real rain here in my small part of the world. 

It's gentle, the rain the mornings tends to be, it's falling softly and steadily and it's easing my sadness. 

Afternoon rain is heavier, more urgent, it's responding to the heat of the day. That was my tears yesterday. Now my tears are morning tears. 

Familiar strangers

I suspect that many people have more than one home. And some, none.

I'm about to leave home to go home. 

I'm nervous, excited, longing for the familiar of before. I'm happy to experience the cold and the sense of just being where I know I'm welcome. Not a guest. 

But this new home is really home. And I'm going to miss it. There is a simplicity to life here. 

I'm nervous of the situation there and how to fit everything and everyone in. 

Focus on family and friends, the close ones. Mainly my mum and sister. They matter the most.

And I'm there to say goodbye to my dad. 

My heart feels a strange type of heavy. 

flying home for Christmas

I won't believe it until I'm in my mum's arms, but we're going. Red lists, politics and my own sense of trepidation aside, we're off. 

Nervous doesn't come close.

That's if we get all the things you need to fly, that's if the plane goes where it's supposed to go.

I don't know how I feel, except right now, anxious. 

inheritance

I get half the House

One day

Facebook memories

It's this time of year when Facebook reminds me of that time.

6 years now, 6 years I really didn't think I'd have on some of those days. 6 years that have made it such a joy to be able to do everything and nothing that I do. 

And although the slight layer of fear persists that it could happen again, this year there has been a break through. This year I know about a drug and this year, maybe I'll be able to have a scan in a machine just 30 mins drive away. 

This year I'm feeling great. 

how she died

I wonder what it was like for my Gran, the one I never met, that my dad hardly knew. I wonder what her death was like. Dying of a brain tumour. 

I'm guessing not great. 

I suspect it's why my dad wasn't allowed to see her. 

He didn't talk about it. 

Nothing to report, he would say. 

My grandad didn't either. 

But I wonder. 

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.