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.