gifts make memories

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

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

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

a full bin

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

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

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

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

A seasoned self isolator

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

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

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

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

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

Being one of the stats

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

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

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

The honeymoon of post scan results

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

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

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

Why the preamble? 

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

2021, hi, how are you?

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

I was right, Macbeth wasn't

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

As well as can be expected given the list. 

I am proud of my list. 

Currently:

EYE  - Optic eye tumour, full thickness macular hole

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

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

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

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

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

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

  

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

Tomorrow, tomorrow and tomorrow

 When Macbeth said it, he was feeling rather gloomy. 

I'm rather optimistic. 

Let's see who was right 

18mm

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

Size matters. 

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

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

cyst

growth

tumour

cancer

all can be the same and all can be different. 

size matters

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

Decades in medical advancement means A LOT. 

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

waiting with twitter

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

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

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

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

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

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

Not today. 

a newbie again

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

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

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

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

I asked for help. 

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

I asked for a blanket. The same

It was soft and fluffy. Different

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

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

The noise was the same. The banging and variety. 

The injection was the same.

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

The length. The same

The resolution. The same.

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

Just about coping

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

'You can do this.' 

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

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

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

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

A nice up of tea

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

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

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

scanxity

I'm quietly freaking out.

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

Even booking the flights is causing issues. 

The frustration and fear, bubbling around. 

My uncle Ken

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

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

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

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

no matter what room you're in

You still feel fate dancing around you.

You still know that it can change on a whisper

You know that some people get it and some never will

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

I did it again

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

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

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

precision over beauty

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

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

The golf good holds more beauty.

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

They should both feel possible. Only one does.

And to exams. 

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

It's about right and wrong.

It's clumsy.

It's unfair.

It's never capable of being perfect.

craniversay

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

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

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

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

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

onion under my finger nails

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

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

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

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

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

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

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