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.