47

This surgery and this life has been making me think a lot about the letter. 

49 without screening

52 with

Kidney cancer 

The plan to have a massive party when I'm 53

The endlessness

And currently being disabled more than usual, not as much as I, we feared. 

It's all a lot. 

Time to fuck off to Disney Land? 

recovery update

It's almost 5 weeks. I've done busses and longish car journeys but they do make me ache a lot. I thought I was through the fatigue but have had a couple of days when I'm knackered. 

The muscles around my neck ache and hurt and my neck feels like it's cracking. The fizzy thing still happens, it's not unpleasant just a bit strange. It doesn't impact my movement. 

I'm less down in mood - started dreaming about being back at work. 

PTSD?

A suggestion from a very good friend was the perhaps my involuntary sadness and tears might be PTSD. This doesn't seem wrong but a potential. Not just for the traumatic disease and the current consequences but also the work stuff. 

To be so ordinarily happy for 6 years, to come home and life change and try not change. 

So maybe, maybe my body is just letting itself feel the feelings. 

I'm glad you're alive

I remember the sentiment when I was younger. At times I thought I was being over the top. Telling friends - well school mates- that my dad could die. 

I don't know if I realised that was true. 

Today, as we wandered back from the pub, my little grown up girl and I got a Chinese and a couple of drinks and we talked about his pleased we are the I'm alive and not disabled. 

Feels like a strange yet obvious conversation. Most people are glad of that. 

She lives with that. 

I live with that. 

stitches out

The relief is a little overwhelming. 

Seeing the small and tough bits of thread that held my neck together and feeling the pulls. All done. 

It matters this step. Hearing the nurses tell me I'm healing well. That I'm through this one. 

10 operations over my life time. And I know the odds are there will be more. 

I tiny little bit of me wants to indulge the idea that maybe, there might not be. I don't know the statistics. 

I am doing more normal stuff. Going to the chemist on my own. A little bit of gardening. Making dinner almost all by myself. 

They all matter. 

And I had tried to prepare myself for not being here, this independent.

I saw how I pointed at something I couldn't reach easily and without pain the other day. I saw my dad's hand. I saw his struggles. I saw what might have been. I don't really know how he did it. To have a fully working body and then not. 

I miss him. I know he'd be so proud of me getting through this next one. And he'd feel so responsible too. 

tracking this recovery

It's almost 3 weeks. I'm feeling frustrated and bored. I can do so much and yet not enough to feel independent. I can cook but not empty the saucepan to drain the pasta. I can water the garden if someone else has pulled the hose out. I can walk but can't turn my head enough quickly to cross roads without a little nervousness. 

I can't drive. 

I shouldn't get on public transport. 

The pain is mainly muscular - a tightness where I'm protective and the scar site is itchy. 

I tend to need a good nap each day. 

it's my recovery

And I'll cry if I want to. 

I expect most people think we should be jubilant about the survival. I'm very sad at times. Not because I am broadly fine but because I'm broadly fine. 

how many more

Once someone online told me to count my blessings and not my tumours. They did not get it. 

Eye - nowt changing and nothing I'm willing to do. 

Tail of pancreas - seems to be dormant 

I think liver - sometimes reported sometimes not

Maybe in the lumbar of my spine - again not sure if I've imagined that, got confused or what. 

I'm currently the most tumour free I remember being for most of my adult life. 

But what's next, which might grow, what might be new and importantly where? 

As I recover, and recover well, I wonder what more by body can do to me and give me, what can it take, what will it survive? 

Each time I gain a scar, sometimes they take old ones away, I have another story and they aren't even that interesting to me. There's too much for most people to comprehend and truly appreciate. There's too much for me. I think I've over taken my dad. I've exceeded expectations. 

My warrior spirit can do it because it's one at a time. It's the next one. And because of the people I've gathered to keep me safe and sane though it all. 

I'm recovering well 

But I'll have to get ready for the next one. 

recovery

The op was on Wednesday and today is Tuesday. My body hurts, aches, tweaks and crunches. It's not just the surgical site, the other places, cannula holes, throat sore, bruised in places around my whole head. I'm on paracetamol in the day and codine at night. I'm doing well but I'm not enjoying the limits. 

I'm so grateful and still feeling miserable at times. I'm mostly positive but also frustrated and grumpy. 

There's no poetry in this... This is too remind me. If I have one like this done again. 

My head is heavy. 

art therapy

Today I took a step towards helping myself. My first session. There's so much. That's what strikes me, just my VHL world is so full. When a therapist sees that, notices it helps. To be seen and validated. To know that maybe we'll unlock some moments. A safe place to process and heal emotionally. 

It's a start and one I hope I can finish. 

the nasty one

As I often do, I described my second brain tumour as the nasty one. 

It was. The cyst was. 

The lack of pain and inability to function crippling. 

Only bed bound for a few weeks. How lucky I an that it wasn't longer. 

And now... Less than that until I might, maybe be that forever 

Not because of the unpleasant side effect of moving but because I simply can't. 

I have reassured myself and others that they don't do this if they think they'll kill you. 

I don't know what is will be. 

Cancer feels so much easier. 

I'm still cross at that man, that friend who thought a cancer survivor was better than me. 

She might be. But not because she survived her one and only cancer. 

I face it and other over and over. 

Today I explained to a draw dropped group of people I had had 2 brain tumours removed. When they then heard I was going to have spine surgery they were even more shocked. Imagine their surprise if if added in the last kidney cancer. I didn't say it. And of course I didn't talk about the other 3 major ones and 3 more 'minor'. But of course I'm not a real cancer survivor. I'm not really brave. I'm not really going through it. 

When you do it well no one sees the rehearsal they see the performance. 

Father's Day

 Last night I cried because I felt a strange sadness that I knew that I missed my dad, the dad I had seen in a picture in my daughter's A-level Art portfolio. He was the man who I remembered loving like a daughter should. 

It is a fact that I miss the one who needed so much physical help less. We still laughed and talked but I felt the dad I really loved was disappearing or gone. Perhaps this fade of need is more natural than I felt at the time. Over the years of my daughter's life, she growing more and more independent, he lost so much of it. 

This father's day I am facing a sudden change, I know the weeks of healing that go with surgery, the first few hours of a level of helplessness that mean you rely completely on others, and then hours turn to days and the joy of going home followed by the peculiar understanding of one day at a time. The walking down the road, making it one step further, the first time on a bus, the first pain free day, the first time eating out again, the first day back at work. And before you realise it your recovered, 6 weeks, a year maybe you never are. Always changed a bit. 

I am not sure how to feel about this one, I might never fully recover, I might be to my daughter what he was to me. 24 days left to know this and not know this. To hope and to fear. 

To every season.

Turn

Turn

Turn 

fear

I'm trying to keep out of my negative head space, I'm trying so hard and sometimes I am good at it. 

Not this morning, I felt a visceral fear of paralysis and what that might look like. This suddenly combined with a fear women have... Sexual assault and no way of telling anyone. I could feel his hands on me. It was as if it were a memory not a worry. Then I thought of the times when I've not given consent. So it's both. 

And it's sitting heavily on me, my jaw is tight and my eyes are sad. 

I don't know how to be alive right now. I don't know how I'm putting one foot in front of the other. It's an elaborate game - a real life squid game - peril just in front and a hope of survival no guarantee and no real skill to help change the odds. 

Right now, this moment I want to sleep and dream and be in a place that isn't now. 

Right now I'm not ok. 

Right now. 

And in a bit I'll clean my teeth and go and get bread and milk and I'll tuck myself into being very normal. 

But I can't ever be that. 

not knowing and knowing

 There is an odd pressure attached to knowing a maybe date and really knowing, so it can become as close to definite as possible. |It got to me this week, the lack of confirmation, the feeling that the careful thought around date and time isn't clear and the breadth of people that impacts. 

I might be

I've been told

Pencilled in

All unhelpful, this is a frightening one that looms and over shadowed the every day. My joy at current independence tickled by this grim worry. The exhausting mantra, don't worry about it right now, it isn't now, it might never be. 

arm

Today I felt a strange sensation in my arm. The left one. Different to the recent fuzzy feeling. This was more like a dull ache - this was similar to when I had my first brain tumour. 

I wonder if I'm creating symptoms to give me a good reason to have this surgery - so that it becomes inevitable rather than my choice. 

My backs been hurting. I'm feeling more stressed - despite my new fancy watch just telling me I'm really not. 

I want a date that it definitely happening. 

Ummm. 

I don't know

If he loves me. I'm not even sure if he likes me right now. There's a small distain in his interaction that makes me wonder. 

Don't get me wrong... When you live with someone this long it's hard to like them all the time. I just know that when I spend time with people who do like me it feels like they do. 

I wonder if he feels stuck. No one wants to be the one who leaves the woman who has

Cancer

Work woes

Spine tumour 

The list won't get any shorter 

Should I ask?

Or just give him space? 

I would love it if he really liked me. 

fear is normal

 Today I cried before I went to skate, to hit and use my body the way it currently can. Today I wondered when I would return after the next enforced break. I've got up to 6 left if surgery is when it has been pencilled in for. I've got 6 left until the day I take a chance. 

I feel a little unsure all of a sudden, tempting fate? 

holding on

The difference of having this when your young is the people you've collected they are great but can't know. 

Now I'm able to hold onto people who really get it. 

I will keep holding on 

3 months

Not even all of that. 

And how do you prepare for maybe not bring and to walk again, or use your arms or become incontinent or all the things he said which are there now. 

gratitude

My daughter was in a mood yesterday, understandable but irritating all the same. I'm pleased to know that the fog of my pain isn't effecting her too much but will I ever really know how much? 

My day ended with her snuggled into my arms and me kissing her forehead as I hid my fear and tears. She clung on and then went to bed. I read my book to forget and then slept. 

Each day a gift and right now, a small torment. Tiny really. I count my blessings and try not to worry about the possibility of a future where I'm not able to be me. 

This disease doesn't let up. Over and over again, the next step towards the next step of an unknown future. I could be totally fine or really not and I could be an almost infinite range of things in-between. 

It's that, I think, that's hardest - perhaps if I was certain I'd lose the use of my arms or know I wouldn't be able to speak then I could prepare. 

But for now I'm just going to have to keep pretending I'm fine. 

Talking to my mum

 I didn't know how to say all the things, for fear of it all feeling too sad, but I got to say some of the things. 

The things I did say: 

Asher is allowed to get physical comfort from someone else - I don't want to know her (or him I suppose) 

I'm afraid of being like my dad - I need to remember to say hello first

I want Ayla to still be able to go to Japan

The ones left to say:

If... 

Crisis

Reclaiming my VHL status and making something of it I decided, many years ago, that my derby name would be cortisol crisis. 

Yesterday while not quite getting the skill of a very tight u shaped turn one of my coaches stuff. Crisis try getting lower but not leaning forward so much. My smile honest and joyful. I'm not a natural athlete - never was. I can blame the surgery for it never seeming to get better but in this sport I'm just new again and building skills. 

How cruel then that once more I'm going to be interrupted. How happy then that today I am determined that I'll get back on my skates post surgery. That will mean I suspect I'll be the only (very ameture) roller derbiest that has come back post kidney, brain and spine surgery. 

Click Click

 A while ago I began to get a click in my neck, loud through my ears from time to time, it was a new and satisfying sound. Now I'm wondering if it's that cyst. 

I wondering lots of things because I just can't imagine what the outcome will be if something goes wrong. 

The friend who annoyed me by not expressing my cancer is as real as others - you try this on for size. Cancer kills some people the cure is worse than the disease for some. But you try this- endless check-ups and fear. Anxiety founded in a real promise that something is growing in you and there is nothing you can do to stop it. The unknown of which bit of your body next, which part might not work. The urge to google and read through others posts - knowing that someone will have had a terrible experience and that that could, might, please god, won't be you. 

Hiding your real feelings from you child and quietly voicing them with your husband, mindful that he copes in another way, he won't dwell or confirm your fears head on but will listen. Wondering who you can be honest with. The futurama Head in a jar. He tried to comfort me by beginning to remind me of my blessings. I shouted (not very loudly) but possibly the loudest I've ever shouted ay him "I know how to count my blessings. I'm good at that. I don't want to now, I'm angry and scared and I have ever right to be." He was silent but held me still and I cried big fat ugly, angry tears. Then I pulled a sad face and blew my nose and we then talked more. 

I would maybe have talked to my dad, but maybe I wouldn't, he felt such guilt I would probably not wanted to worry him. I see the pain and fear and anger in my mothers face. She checks, she checks, she checks. Both of us holding it together pretending we can protect the other from our worry and fear. 

Today as I stretched out my head and neck from roller derby practice I thought about what strengthening my neck means. Will I be able to step away from this next challenge and begin to love again as I have before? This is a cruel disease that tricks you into feeling fine. 

My new challenge is to stay positive. 

It will be ok. 

Am I breathing

To know your body and to really know your body are different. I'm sure I fluctuate. 

Since the news I'm mostly thinking about my breathing. 

Am I? 

Following on from a podcast I've been using my breath to calm me, to slow down my fear and anxiety - that was for the non VHL related stress. 

Last night, through tears of fear I tried to use it again but this time I kept hearing 'difficulty breathing' as one of the things to watch out for. 

What risk then to that being a possible side effect of surgery and what fix is there for that? 

My voice matters so much to me, so much of my personality and my joy. 

My father struggled to speak clearly. It isolated him. It stopped his comic timing. I can still see the frustrated shake of his head when he wasn't understood. The resignation to give up saying it, whatever it had been. A silent tut on his taught lips.  

I am thinking too of life in a wheelchair. I'm thinking of the changes to my home. 

What will my husband become? 

Will everyone who loves me be part friend, part carer? 

To wait is to delay the possible physical risk, maybe, but waiting is mental exhaustion. 

Take a deep breath. 

Head in a box

I knew that eventually this one would need to come out. I expected it but I didn't think it would be now. I hoped I had longer. 

And now, reeling from the news I am doing what I do - thinking through the worst case for my family, worst case for me, timing, plans, plan, plans. Default coping. 

In the hour or two after being told I have imagined so much, including the following:

• stopped breathing
• Been a head only
• Told my husband he needs to put all the rails back up that were there for my dad
• been wheelchair bound
• started a head only coaching company
• Told my new job that I can't start
• Move my surgery so it isn't during the girls exams
• decided to wait until after Japan
• died (of course) 

I've also actually, called my mum and sister, WhatsApp key people, emailed the girls school and begun to look at possible time frame to explore my work options. And cried - quite a lot. 

What I do know is that I don't want to take any unnecessary risks for letting it get worse. I don't want to go through what happened with the last cyst that really nearly fucked me over. I know I don't want to live with worry and fear of symptoms- the difficulty breathing one the most. 

nerves

I hadn't realised that I was feeling nervous but of course I am. Every year, sometimes more often. Each time. Getting ready to put on a brave face. 

Every time getting my paperwork ready 

What this time? 

reunion

It started with a LinkedIn message and my caution. Then trust we talked and laughed. I felt like the 20 something I once was. He remembers me with rose coloured spectacle but it was lovely to be thought of that way. 

He was thrilled to hear I had a daughter, I'd confided in him of my worry she fear of passing on VHL, and I was equally delighted to tell him she doesn't have the gene. He wanted to know about my health. He wanted, I think, to know I was ok in all sorts of ways. 

How lovely to have someone care for so many years and enjoy the positives I've achieved. 

I felt a tinge of sadness that he couldn't confirm that he's been joyous too. 

There is always spring

There is a lightness in March, a month that all those years ago was my brother going in for his first and straight forward, VHL related operation. I don't think I remember being worried about him. I was about to take my A-level exams, I was desperate for Steven Webster to notice me. I recall sitting in the Addenbrookes Concourse, a place I marvelled at because it had more food outlets in it than the whole of Gorleston, Great Yarmouth. We talked about those then routine and silly things that meant the world. I always found him so very easy to talk to. He never judged me, well I never felt judged. I wanted him to be proud of me but there was no need of that longing or to put any real effort in to do things to make that happen. Probably because he loved me in a very simple, big brother way. I loved him back with the comfortable and not over the top adoration that a little sister should. 

I remember his kindness, his quiet intelligence and louder curiosity. He smoked and looked good doing it. Because of a rare photo I often think of him juggling. He wore chino type trousers with T-shirt and shirt, he cared about his appearance but he looked effortlessly messy. I don't remember his voice, but it was a sensible deep, and, like me, he didn't seem to have fallen into a Norfolk accent despite living by the sea for most of his life. 

Such a short life. 

One he intended to live well. I know he had experienced a broken heart. He had laughed, danced, travelled, experimented, worried, cared and loved. At 22 he had done as much as he could. I was inspired by that, but afraid for a long time that I might not be able to live a life so full. 

My big sister said once, in a rather one sided argument that she regrets, within it a list of truths. One of those truth was that I felt I had to live two lives, his and mine. So true. I feel a little sad that she was already on a set path that she didn't know how to deviate from. She couldn't take that gift of knowing it's ok to be selfish. It's ok to live your life as you want to. To take risks and to fall and get back up again. She falls, or more so, she is tripped, over and over. Bruised each time and I would so love to help her heal. She gets up, don't get me wrong, but so often it seems to cost her more than most. 

Today, just a few away from his anniversary, I'm sitting in my home, in a good place mentally and emotionally and aware that he really would have been very proud of me. I can't help but wonder where he would have been. He'd have just turned 51 and perhaps he'd have been a dad. This thought brings me the most sadness, a bit of family we can't ever have. (We are quite confident he didn't sire any unknown.) But that way madness lies. 

As I drove home from choir yesterday, a very significant song came on. I sung along and tears fell at the lines. 'I am not alone, while my love is near me' I was thinking of my dad and then him. There love is always near me. 'So come the storms of winter and then the birds in Spring again. I have no fear of time'

My daughter, the same age as I was when he died, has just rolled next to me on the bed. 

How lucky I am. 

There is always spring 

feeling things

Today I've mostly felt a little small and sad. A strange mix of emotions over the week and I'm not sure where to put the feelings. 

Someone I love said some stuff that hurt and I don't know what to do with that. They've said sorry. They didn't like that they said it. I don't think they know why they did, but I'm still finding it a bit painful to know it was in there. 

Nothing major and they couldn't sleep for the worry of how it made my feel. 

I don't know how to ask why though because when they said they were sorry I took that. 

It's rare to feel hurt. 

And with all the things and all the other big feelings this just layered into my own sense of being small. 

Like I've shrunk. 

Daren had left the chat

I was scrolling through my phone today. Looking to distract myself and then I saw it. 

The chat I set up to update people on my kidneys. 

And he's gone - I guess someone has cancelled his phone. He's really gone. 

if Trump is right...

And god saved him... Then I think we will have to admit that the ancient Greeks had it right and the gods see us as play things. They will find the next 4 years quite funny. 

We need a Perseus - we all need to steal fire. 

Fear of a mother

 As I talked to my mum on facetime last night I saw the fear she feels for me. This was linked to me saying I thought maybe I needed a change in career - that I am perhaps ready to take a step back from the imaginary race I've been on. For the longest time I thought I needed to move up to move forward and with that I could only really see one path. 

Circumstances shape me - tumours don't. I have always been furious if I think VHL is going to stop me doing what I want to do. Livid that they wouldn't accept me onto the VSO programme and full of determined rage when kidney cancer got in the way of interviews for my then next step to Assistant Head. Incandescent when I was refused a massage because the less than scientific masseuse theorised that it would squash out my medication with all the toxins too. I didn't even believe the toxin were squash-outable. 

And then I saw her face and I didn't think I was doing a dangerous job but she sees the stress and she believes that the stress adds to the tumour growth and she is genuinely afraid of me being in pain and me being less than in control. And, frankly, so am I. 

I take hydrocortisone each day - I forgot yesterday and didn't realise until I was thinking about her worry later on in the evening. I felt fine. Partly because I'm feeling a bit stronger since I got home and since I started to see jobs I could do. Jobs with a purpose and a level of satisfaction included. I could see a future I wanted. It will be hard to walk away from the holidays and the pay... but if I get lucky I'll walk towards a different chapter and will be able to enjoy something new. And although there is a little bit of me that is sad at this I think maybe it is the sunrise after a dark night I need. 

Distracted

 I had a cry yesterday and I wasn't sure quite why, but it had something to do with the pain of missing Daren, my brother and my dad. I miss other people but them the most. I think my current situation has stalled some of my worry about other things, no bad thing. VHL isn't really featuring in my life right now - as in it's not my main worry, not my main pain or fear. 

I did get annoyed by a friend the other day. He was talking about a woman he admired who had survived cancer, he looked wide eyed and full of awe. I quipped - 'the best people have it' or  something like that but he didn't pick up my need for a similar admiration. In fact he looked like I had said something strange. It was ignored but I kept it. It irritated me, not least because I got the feeling that I'm not considered so brave, such a survivor by him and I wanted to be. Later that week while walking and talking with another friend I mentioned it, because I'd been so annoyed by it. She proposed that it was because I hadn't had the cancer everyone sees on TV, I hadn't had what he might consider 'proper' cancer. No hair loss, (obviously we're not counting the hair shaved off for brain surgery) no chemotherapy. 

I get back to work too 

Now this other friend knew me when I was off with nasty brain tumour number 2. 

I remained cross and despite the reality that people don't think you're as brave if your not throwing up and looking next to death, then you haven't been through it. Well I have, actually I've been through it more than most, I have had 6 lots of stuff cut out of me. That isn't an easy journey and it isn't nice or simple and I want to scream sometimes when I think of what will happen if I get a tumour that can't be cut out - or if I run out of kidneys. What if I lose the use of parts of my body, like my dad did. I do brave face because it's easier most of the time but I do expect people to see me. I expect friends to see my strength and yes, I want to be admired for it. 

bubbles of grief

I feel like the grief over you had been like bubbles I'm trying to control, that are drifting around. Bursting quite randomly and of different sizes. 

Each pop short and soft. Quick to disappear but it's only the ones escaping from the larger mass inside. 

community

My biggest challenge that isn't VHL. This one is hard. But as is my way, I'm going to find positives to hang on to. 

As always my family and closest friends are there, my support and my rocks. I found myself saying 'bad things happen to good people.' Because it's true, but also... When they do, good people have other good people ready to help. 

That's where I am. Adrift perhaps at first, but no one ever let go really. I'm tethered to those that love me and whom I love. I'm safe regardless. 

And through this I'm thinking that I could do with being more on my immediate community. I toy with that. I like feeling part of something - that's what the job does. But I really do need to be more than my job. 

I'll get through this one too. 

As time goes by

 So often I find myself remembering the importance of my dad's most important life lesson. Everything passes. The good and the bad. 

Today, a day I put in my calendar as an important reminder of this, this is the anniversary of the day I went into hospital and didn't come out for a month. I take time to enjoy the peace and happiness of life. This week, this will be another anniversary of me, those I love getting through another trial. I hope not literally. I feel stronger than I did because of friends and family. People who keep me safe, sane and secure. People who hold me close physically and emotionally, people who I would not be able to live without. 

For as hard as this is right now, I have my family, my friends and my health. My home and my intellect. My self worth is in tact and I am still one of the lucky ones. 

clinic

I wonder on days like this how much of my life I'm waiting in clinic. 

Today I'm hanging about to get my eyes checked. I am just now chilling out and waiting. Just waved at my consultant and he seemed genuinely happy to see me. I've known him a long time now. I have seen him more often and regularly than many members of my family. 

Got a new one today, although he has a connection already. He looked after my dad a little bit and his sister was my halls, then house mate while I was at uni. 

I'm no stranger here. 

This year a good year. This time nothing new. 

funeral count

 My first was my gran, my mum's mum. I was 8. I didn't go to the burial. It was very white and I sang all the hymns with pride because I knew them all. But I couldn't finish The Lord's my Shepherd which I remember every time I come across it. I don't remember a wake. 

I must have gone to Great Gran Doherty's - don't remember. She was formidable in life. 

And Great Gran Jessie who would have been a number of years later. I met some family I didn't know existed, And I still don't as their names and faces are lost to me. Both my dad's one from his original mum, one from his dad. These felt rather routine. 

I might get the order wrong after this - but I think my Uncle's wife Jane. I was young - if I went at all because I don't remember. 

Conrad, my brother - I was 17, he 22, in our Church at home St Peter's and I didn't feel right in the wrong bit, we always sat in Jesus's right arm. I know that we sand Bread in Heaven. Then the crematorium. Both packed, too crowded to know who was and wasn't there. The wake at the Pier hotel. My uncle came over from Australia. 

Next - Laura, the big sister of a boy I very much liked before, Michael. I'd been his plus one at her wedding. She died of an asthma attack, she was too young. Same church as my brother, the right arm though and I cried like she'd been my best and closest friend, almost overwhelming - my thoughts mainly on how I could get out. I don't recall where we went after that.  I think I was about 18

Uncle Hugh, stood up and died so the story goes. Burst aorta - I don't remember much of the service but I do recall going to the grave, it was green. My cousins all there I think. 

My nephew - the tiny coffin, held on his father's shoulders. The pain on my sister's face and the heartbreak from us all, looking at his name appearing next to his uncle Conrad's. Poor little Jake. No wake - I don't think, just pain and tears. 

My grandad on my dad's side - I don't remember very much of it at all. Heart attack - small mercy he had altzimers. I recall it being a sunny day. 

Collette - oh that one was really hard. It wasn't long after I had been told the kidney cancer was there and the operation would be tricky. I had taken that to mean I might die. I couldn't help bawl at hers. I once again found myself almost inconsolable. She was my mum's best friend. I loved her deeply and truly. Her coffin was wicker, it suited her nature and her hair. She died of brain cancer. She deserved a kinder death. 

My husband's step grandad - Sid. A humanitarian one, his granddaughter so totally bereft I was almost shocked, in fact I think I was, an old man had died and he really was an old man. He was spoken of very fondly of. A wicker casket. To be buried under a specially chosen tree. Despite the hurt around, I felt this one was joyous. 

Uncle David - my Aunty Scrag's partner, there was a fair amount of laughter at his, he knew how to make people laugh. I think he requested ring of fire for the curtains closing. He died of cancer. His wake was at a rugby club, I had been there before - in a much nicer dress. My sister told me she had voted Brexit while we stood at the bar. The buffet was mostly made up of beige things that I love but my husband (vegetarian) couldn't eat. 

A student- I wasn't allowed to the burial, my first experience of a Islamic ceremony and as a woman I was not permitted to very much. Neither was her mother or any other female in her family and I found that almost unbearable to know and acknowledge. Less than a week later I thought the next funeral I would go to might be my own. 

My gran, my dad's second mum. She was so pleased she was going to die, she didn't really want to keep going. I think life bored her, she didn't take a huge amount of pleasure from it and when I heard she died I was genuinely happy for her. She just wanted to stop but wouldn't do it herself. Pancreatic cancer gave her a swift and welcome end. 

I've missed one - I don't quite know who except I do recall the wake - my mum and her sisters taking pictures. I thought it slightly vulgar, but now I know that it was one of the few times they all got to be together. The eldest of them died my second Christmas in Malawi. Wonderful aunty Mary. Before COVID had shown us all how to mourn remotely. 

Then the online ones.

First my uncle Ken, done well, we all saw it through the peculiarity of COVID. My dad's words spoken for him.

 Then my not actual uncle but felt like it  - Tim. Online - catholic and not such good production values. I had a better idea of what being online would mean. I didn't wear black but I did walk out of my room and into the kitchen back to normal life. 

My dad was next, we sat on my sofa, the three of us, and I heard my words spoken by my sister, watched as my eldest niece almost collapsed, watched the back of my families heads only guessing at the words they whispered to each other. We, my little family of three held each other tight and I marvelled at how my sister could be so composed. I arranged a wake of my own after that. 

2 more while I was in Africa. This one a colleagues Gran, she didn't want to watch alone and as she was a catholic we sat in her living room, looking at the dead. The eulogy, as she predicted was extraordinary long, odd and rolled into the wake staring before the online mass had concluded. We all had a blood good knees up, and I know her name was Veronica because I insisted on playing Elvis Costello's version and along with her granddaughter we sang it several time at the top of out lungs. 

The last online one was Ros, wife of Tim. I thought Catholic again  but the celebrant was female, so I wasn't sure. The eulogy was her reading out the words from a card I'd sent to her nieces (they didn't have children) I was very proud and moved that they had treasured it enough to have that spoken to all who gathered and slightly saddened that on one 'closer' to her had words of their own. 

Back in blighty, my uncle Michael died, before I had taken the trip to see him. This was the first funeral I'd been asked to do anything at. I was dreading it - I am what many would understand as a wailer. I could be hired out. I will cry movingly and deeply. As you can see I mourn a number of people. There's a shorter list of people who I didn't get to online or otherwise. A catholic requiem, I spoke the responsorial palms - The Lord is my Shepperd. You can see why that was a toughie. Uncle Michael and I shared a love of theatre so I wanted it give it meaning, I spoke it clearly holding back the obvious grief. I performed as is fitting the word of god, It was the only way I was going to get to the end. I sensed it was a little more felt than my very British family expected, no one mentioned it, I did it. The wake, a little cold, the spread simple. He was buried and we headed to the grave side, stood around. I don't know why but I decided not to chuck a handful of dirt on his coffin. Seemed a little disrespectful 

Alice - the most recent (until Tuesday) in the same crematorium of my father and brother. My mum spoke, she was my dad's goddaughter. She had taken her own life. She had practiced, like Daren did. She meant it too. Her family, people I grew up with, her dad my dad's best friend. I didn't make it to his funeral, I don't know why I didn't go because I'm sure I could have gotten the time off work. But it felt like a year I couldn't do another one. Her wake was very small and at our house. My mum 'hosting' it. We sat in rooms my dad had been in, we spoke about all sorts and nothing. Exhausting. 

I may recall some more that have faded for reasons I don't know today. The reason for this list - because the next one is going to be one of the hardest. My daughter's first live gig! Galo's humour. 

Making it 22. An average of roughly one every other year of my life. Is that a lot? 

And it won't be the last will it. I am thinking of the ones to come, the grief and pain. The purity that go with some of them. But not this one. This next one will be painful and one I wouldn't never have predicted for now, I assumed he's attend mine. 

There are some issues around my Daren's no will and he'd only really talked about it with his partner and his family don't seem to want to take that in. He wanted us all to know it wasn't our fault and we couldn't have prevented it. I believe him but I hope it isn't always true. 

There's a funeral I dread attending more than anything else in the world. I don't dwell on it too much much becuase if I do I fill with a shakingly visceral fear that it might happen. 

last letter

 The words on the page, the drafts and the post-it notes. All trying to comfort us and give an explanation. He needed us to know we couldn't have done anything. He needed us to understand and I don't think everyone can or ever will. But I can. I'm sad, I miss him, I, like we all do, expected more time. 

I expected to feel more when I read it but I just wanted to talk to him about it, Ask him questions. And a bit of me wondered if maybe we were all mistaken and this was a song. The lyrics to a song. A song we would perform together one day. That's what we always did. 

Maybe it's because our friendship was a distant once know, seeing each other when we could, that the time between face to face could be vast. Well COVID was the second most vast, the wife was the longest - she didn't approve of him seeing me. She really didn't get it, she didn't last. 

I hope he knows I'd understand, going to see his partner yesterday was an act of friendship for him. He would be so upset to see the upset of others, especially those he loved.  A small act of service to him. 

We couldn't have changed it, over and over, note after note, he just couldn't face being alive. He didn't believe he could be himself, couldn't believe we would love a different him and that something was wrong with his brain. He was right in a way, because anything that made him feel like he couldn't be here with us must mean something was very wrong. 

I text him on Saturday, I was at a gig, live music, watching bands always made me think of him. It always brought back such joy and memories of us laughing and creating, performing and teasing each other. We wrote so many depressing songs, we felt the hurt of love so deeply, the disappointment of being let down acutely. And together we made something relatable and really fucking good. I grieved for those days many times. I had a small hope that we would reunite one day, do our stuff together again. I did not see this end. 

tribute

I've experienced a lot of grief in my life. Some simple and some less so. Your death is both. 

I'm torn between understanding and confusion. I'm not angry, I'm not frustrated. I'm terribly sad. I just want to talk to you. To catch up. To say the silly things and all the profound ones too. That, after all, was us. We saw life in it's extremes and it's silliness. We wrote love songs. Because we knew the hurt and bliss of it. 

I can't imagine singing now. Not that I only ever did that with you. But I experienced the best with you. 

And as I type I know, perhaps you and I could have made a song out of this. 

Finding out more

 Today I found out a little more of my Daren's last days and how he took his life. 

Perhaps it will help me process this, but right now I am not sure. There is a letter, one that was for all of us. There are drafts too I'm told, post it notes on how to look after the animals left behind. It was no accident, no cry for help, no whim. He really needed to not be alive anymore -that's what he must have believed. 

We all feel some kind of responsibility when someone does this but we don't if someone has cancer or a tumour - and this was an illness because my Daren simply would not have left us with this pain if he felt he had a choice. I don't believe his actions were a choice. He was very ill and it took his life. 

Daren

 

Daren

You’ve left a big gap in my heart. When I think of you, I think of your smile your talent and your gift for making me feel loved. I am no stranger to grief but I hadn’t expected to be grieving you so soon. Perhaps foolishly I thought we had so much more time. I hoped you were feeling better, making steps to a recovery. I’m so sorry I was wrong and we don’t have any more future to enjoy.

You were my Daren, my guitarist. I never had another, I remember when you told me you were in a new band, I felt very jealous and so wanted to be able to write and perform music with you again. It’s who we were for so long. The advert answered, the bond made and never lost. Never will be. I will keep you with me always.

We made great music, we made some terrible stuff too, but we really did find ways to create, and I was so happy doing that with you. Each song we gave some of ourselves to it. It had always been a dream to perform, it was its very best by your side. My life was always fuller because of our music, and it has been a little gap I’ve never filled again, no matter the choirs or attempts at other bands, even playing for myself. It was always the best with you.

We almost made our friendship last 30 years you know, through the various changes we both made, the career choices, the choice of partner – you more than me of course. The people in our lives couldn’t ever compare could they. Once you sung your soul out in front of a crowd, harmonising perfectly, hearing them sing your own words back to you, listening to the expertly rehearsed timing working its magic, well who can beat that? Life may have meant we didn’t do that forever, but those gigs, the laughs at rehearsal, the creating on my futon or your box room will be some of the happiest days of my life.

No matter what – when we met up it was so easy. You were and will always be one of my best friends. Perhaps that’s why I’ve always found it so hard to call anyone my best friend – because I had you and even when  - that short period when we didn’t -couldn’t see each other or talk as much as we wanted to happened – it didn’t break the bond.

My words feel small in comparison to the pain I feel now knowing I won’t ever be able to sing with you again. We were good with words together, we made poetry together.

As we once wrote ‘you came and found me, and rescued me from me…’ and now I’ve got all this life that you won’t know about. I wish you could have stayed for it and I know if you could have – well you would have. You never wanted to hurt anyone so I know your hurt must have been huge and overwhelming.

I will miss you for ever – my Daren, my guitarist.  

age and time

I was my daughter's age when my brother died. I was living a fairly normal life, some shit had happened. To me and to others but this one. His death that was the biggest moment although it's faded in many ways and it's not what it once was. 

Did it make me who I am? 

mid July and the cotton is high

 There isn't much VHL wise going on, the good days, the days to enjoy and feel the laziness of all being as well as can be expected. A letter through the door for my next clinic appointment. That's September, that's not for a while. I haven't had a scan letter, don't see the point without them having had a good look at my brain and spine. I suspect that will be booked later. I'll do my usual, wait a couple of week, follow up if I don't hear. The admin of your own health. Simple and necessary. 

my body

 I am a slim person, always have been, biggest I've ever been is a generous size 12 and even then my legs stayed skinny and my arms and in lots of ways all of me, I don't really have a bum to speak of. Anyway, I've always understood I'm lucky, my body looks fine, even very good in the right dress with heels. So today when I looked at my belly and my face and my scars I felt a sad twinge of 'oh, you're changing' 

These new scars are a bit rubbish, they don't look very dramatic they looks like I've fallen on some forks, or that I've been clumsy some how. My big olds ones were worth showing off. These ones aren't.

you left the chat

Today I got good news. The surgery was very successful and I am once again kidney cancer free. 

Of my years on this planet that's about 2/3rds that I've been this way. Long may it continue. 

I set about sharing the good news. Only fair to speak of the joy when it comes. 

I noticed that in the WhatsApp group a range of people had left. Maybe some have changed their number. Maybe though, and I suspect this for some, they thought it was over. 

Ha! 

If only hey, if only VHL could be over. Not only is it never over until it's really over, but for some it continues in their children. My poor dad had that, knowing it was in me too. I thankfully do not have that. 

I am happy everyday that I don't see it continue that way. 

It's just in me. 

inspiring

It's lovely to hear and an odd one at the same time.

Once a neighbour wrote a essay at school about someone who has inspired you and she chose me. 

My godfather has often remarked about the way my dad inspired him and I'm part of that. I replied this time it's one for in front of the other. 

And then at breakfast the day after my uncles funeral my cousin told me I inspired them all. 

It's lovely and strange to be seen that way. I think we all just get on with it. 

I was listening to a podcast with a man who has terminal cancer. He quite rightly said to live each day as your last is exhausting and doesn't last long before you really can't be arsed to. And that's so very true, I don't get to do that. 

My good pal and I laughed that she had witnessed me - very jokingly - told my daughter she couldn't kick me off the sofa (which she was literally trying to do) because I had cancer. My pal found this so funny because she's never heard or known me to use it. Let alone in such a frivolous way. 

I think that's what I inspire... Just getting on with life and although I always have something and could use it more - I will mostly aim to be happy and get on. 

The time flies

 Those of us who have a long MRI know that when you just need one bit done the time flies. Using the counting of breathing in and out and holding, creating a welcome distraction from why you're in. 

The thoughts otherwise wander all over, some might be able to mediate, I talk myself out of the worry and fear, the reason you're there called into sharp focus. The habitual prayers I say to ward off the potential growth. That's blind faith isn't it, that through that prayer perhaps somehow they shrink or disappeared. At other times I shift out the memories of surgery and difficult recovery days. 

Convincing myself I can taste the contrast fluid, the instruction to drink lots for the next few days to flush it out. Oh if only we could eat or drink something that would flush out VHL. 

Just how much kidney can I live with, just how many surgeries can this body, forever aging, take? Should I be doing more? 

And then home. To wait and do my very best to ignore it all. 

scan coming up

 Just of the abdomen and just routine and just part of the routine and just what happens. This is VHL awareness month - well rare disease but for me that that. Just another one rolling around. 

Just a time to wait

Just a time to worry

Just a time 

Just a

Just 

My uncle

 When my dad died a friend of mine said, it’s like your anchor has gone. It was and still is. Grief finds ways to sneak up on you and today as I type I feel the loss of my dad and my uncle mingling in surprising ways.

I’m not quite sure why my uncle and I connected the way we did but I think it was the first time he gave me a novel for a birthday present. It was one of those summer gatherings in North Norfolk I recall. One where I felt how young I was compared to my brother and sister and my cousins. We were just sought of talking and I got that book. A simple and fun read. Sadly I don’t remember the title but I do know that it was one of the first books I’d read for pleasure and one that made me laugh and had some quite raunchy bits in it. Much to my mum’s surprise, but if I’m right, not really to mine. I think despite the various differences the two of us had quite a similar sense of humour. 

Over the years I always felt understood by him, we would talk about theatre and disagree on politics. We could be honest with each other about a range of subjects. I really valued the time we spent together, and especially the weekends we would meet up in London to watch a play or two and he would always treat me to a posh meal. At one, that he didn’t know quite the subject matter, I’d not long been told about my first lot of kidney cancer. As we took our seats and looked at the curtain, an oddly pale green one pulled across on what looked like a cheap rail and as it was drawn there was a hospital bed and then it clicked. And yup, the play was about a parent with cancer. He gave me an apologetic look as the lines continued to feel close to home. We may well have been the only two in the audience to smile and stifle a laugh or two until the interval where we could laugh louder at the faux pas – it was quite a good play.

I remember his generosity in other ways. Having explained to him at one of his parties that I didn’t know what good champagne tasted like, he had a glass in hand, but rather than pour me a glass he went to the kitchen and came back with two bottles – different types and said something like, ‘try these, I think you’ll appreciate them.’  I did try them once back home and could tell the difference but never did confess to him that I prefer prosecco.

And most recently the gift for my recovery, the fact he navigated the Victoria Secrets website to get me my preferred perfume. I think he would have found it funny and I found the gift – to help me not smell bad was a beautiful one. And each time I use it I will of course think of him.

I’m so very lucky as his niece to have so many happy and precious memories of my uncle.  

fade

 This morning I looked at my newest set of scars and wondered at them, their size and colour, I don't remember how ling it takes for them to fade. How long the time is for it to be harder to see and when - for me will I find a way to forget too. I don't completely forget but this one, this time was quite straight forward. 

Last night, while out with a friend we talked about what kind of trauma I have experienced and apart from a lot of it, it was interesting to link it to Kate and her news. A complete stranger with cancer, but the world knows. Will she be given the space to deal with it? I sometimes wish more people knew about me. But I see that fades too, everyone at work forgetting that I came in before I was anywhere near healed physically and if I'll ever be healed emotionally. 

about 9 weeks in

 To remind myself that 9 weeks in and I really do feel like it never happened, except when I look at my tummy, the lines still an angry redish purple. I should start to build in more exercise. 

classic recovery

This is to remind myself for the next time. You can do too much and that's part of it. 

I was in a bit of pain yesterday and I think it was because I'd over done it. My body needs more time to be healed and I just needed to slow down. 

So I did. 

remarkable

 When I look at at this time I want to remind myself of how remarkable it was, to be so well, to be back at work and to be able to do so much. There's still the driving and using public transport to do, but that can wait and must wait. But I am able to do so much, not even 3 weeks ago, and I have to be aware of what I'm lifting and mindful of pulling open a heavy door. But otherwise - all really is well. 

My mood have lifted, despite it trying to drift to the unpleasant days, the fear of running out of kidney to be 'fixed' but I distract myself and remember, not yet and maybe not ever. 

slow walks

 I'm quite bored, I can't do enough of anything to feel anything like independent. Knowing I couldn't escape far. But the recovery feels better than most, and although I know I'm weak in some ways I'm fine in most. 

I've had the mix of relief and fear, sadness and worry but all told just going to take it a day at a time. 

 

The robot did it

 6 days ago I went in to have the kidney tumour that's been quietly growing for about 5 years removed. They found a tiny one tucked behind it and got that out too. Nice. 

This time the robot helped. The not quite epidural was horrid, 3 attempts and the electric shock of the two not quite in the right place was grim. Claire - the assistant - was amazing. This too shall pass I told myself. It doesn't last forever. 

I was asked what I would dream of, Malawi I said, after a moment of panic that I had no good memories at that moment, just the panic of pain and discomfort and the memory of all the ones before. All 6 years of Malawi came over me and I went under. 

3 faces of worry and relief saw me next, those 3 important faces and then the recovery began. Not really pain but the feeling of a body not like the one you had a few moments ago. 

This too shall pass. 

Then a morning of not having the energy to do anything and I mean even ask for help to get my phone. No visitors. I'm not used to ward recovery - I'm used to HDU. I'm used to being checked on constantly. Not this time, a curtain and noises, the odd check. I felt very lonely for a few hours and then those three faces again. I don't know if that was day one or two. But I do know that at some point the pain in my shoulders was excruciating. Sharp and sudden. I cried out, I pressed a button. eventually someone came. Then a bit later someone gave me a pain relief and it worked, but I still didn't feel okay. In fact the worst day, bit , afternoon - I had no sense of time, was when I panicked and thought I was losing myself. I got frightened. 6 Days later I'm able to say, good sign, I clearly want to be alive and didn't want to not be. 

This too shall pass. Along with a fair few glory bes, Hail Mary and an Our father for good measure. 

Slowly but equally quickly, this bit came out, that bit came out, that Dr said yes and I did the necessary shit to be able to leave. The drain was the last. That is a very strange sensation. The tears of joy at the permission to go home, The wait for that, the taxi and then home. Oh home. 

I didn't sleep well. A snatched hour at best followed by discomfort. Bloating and gas, my back and sides and stomach. The bruising from the IM steroids and blood thinners and  - nothing to do with the operation - but the throbbing thumb.  

This too shall pass. 

I ate when I could manage, the three faces still worried but much more relieved getting me what they could. Tolerant of the farts and burps. Each one felling like a bit more of me was returning to normal. 

Yesterday my sister came and I cried. It was so good to see her. Our 3 faces, her, my mum and me can only ever know this. I've felt so alone at times, they are the closest ones to really knowing. I've been crying a fair amount. This brings back such unpleasant memories. And I know I'll get on with everything but I can't help but wonder about the next one. Spine? Other kidney? Something new? 

Because this too shall pass. 

hello new place

I'm sitting waiting for an MRI. A new one. The form is almost the same. The wait feels a bit different. I'm not nervous of the scan but instead what it represents. 

I got the wobbles yesterday and this morning. I had the intense and real worry of the 'what ifs' 

What if it has grown lots

What if the cancer has spread

What if they cancel the operation

What if they don't

What if I die

What if I lose the whole kidney

What if my recovery takes longer than I'd hoped

What if

And the 'then whats'

Then what will happen to my family

Then what will happen to my new job

Then what will happen to me

Deep breaths 

when you are not

Writing to be seen

maybe when

Maybe when it's too repetitive

Maybe when it's not a simple cure

Maybe when you can't feel too much pain

Maybe when your body says "no more"

Maybe when you hear real understanding

Maybe when you don't survive

Maybe when you're at you're lowest

Maybe then your fight is live

Time to go...

There is a clear theme when you have a disease like VHL... waiting. Waiting for appointments, waiting for results, waiting rooms, waiting games. 

I think most of us learn to forget the wait at times, it sits quietly in the back of our mind and surfaces most when someone else, who is waiting too, asks "do you know when..." or "have you heard?" 

This week, an appointment I'd been waiting for arrived quickly and happily when I could go easily without a lot of rearranging and adjustment. And at the end of it I have a better idea of how long I need to wait for the next bit. I don't know exactly of course, that would be too easy, that would be too convenient. And so I give my news;

mid-December. 

So I'll wait to find out the exact date and then I can plan more. It doesn't just impact me, it means my work, my family and my friends. It means cancelling things, probably, adapting things, likely and a period of recovery, definitely.   

and then, of course, because it is VHL

wait for the next one. 

happy anniversary

 8 years since that day that I didn't know would be a long month 

you never know what's round the corner

How long is soon?

 What does soon mean then? 

In Malawi if you say now, it's an unknown amount of time, if you say now now, it's now. 

In the NHS when you say soon, it could be anything from a week to a month to more. An endless amount of obviously not now but when, running around my head. 

I'd quite like a before or after Christmas answer. 

My first brain tumour I was given the choice of before or after Christmas and I chose after so I had the operation in January 2000. As I sat on the sofa with my sister on the 31st of December 1999 we didn't feel like that was really the right choice. Party over, oops out of time. That's how it felt. It felt frightening. It felt unknown and it felt far away. 

It always will when my first real experience of VHL was my brother's routine operation not going to plan. 

This robot better be good. 

I've got cancer

 Which one should I go for next? 

so far in my various communications I have given the news in a range of ways

A cyst that is now more complex

A little bit of cancer

The tumour has grown

Good news - all basically the same - but I need a procedure

Luckily a robot will do it

Not as bad as last time

Will be able to get back to work faster

Cancer - they are getting rid of just the cyst, not the whole kidney

You can live off 10% of one kidney as long as that bit is working

Nope - I don't need yours, yet. 

I'm thinking of - I've had kidney cancer for a few years now, the good kind but now it's looking like it might turn bad and they want to get it out, Please still give me a job. 

and while this is my reality, while I'm taking this in I saw the scan and the size of the one in my spine. Ooof he's grown. It's a he. I might name him. He looked like a lozenge. Lonnie. You can stop showing off now Lonnie. You just stay right as you are. I wasn't ignoring you before it's just that your sister was doing such a good job of growing but quite as much as she could have. She's complicated your sister. She's moving out soon and I'll be all yours. 

As expected

 There is an oddity in all this. 

"it's time for it to come out" and I had been anticipating it. I can track the growth and knew it would be within the next couple of years, but I had hoped for a bit more time. 

But getting it out - something I wanted so much for the last one. I wanted to wait, I wanted to feel settled. I wanted to know I had a proper job. And I still don't know. I am now waiting to see the surgeon. 

Strange too, to cry about getting rid of cancer. After this, it will be gone. After this I start that clock again. Because  it doesn't end. 

How you give the news matters, I have given my usual optimistic slant. 

and so it comes

It was the night before clinic and all in the house, everyone was quiet, even the mouse. Or I'm being quiet. I'm quietly frightened. 

Today I was ok, busy but on the way home I began to feel the dread. The not totally irrational fear that tomorrow I could hear some bad news, even some very bad news.

My new colleagues got it. A card and some chocolates. Just to say they get it. That this is hard. I tried to play it down, like you do. But honestly, the simplicity of the new people in my life just saying. This is hard. Meant so so much

It must be hard, every six months. I thought, she gets this in a way some don't. I suspect she gets it because she's had to find out. I suspect she's had a clinic or a diagnosis - at our age lots of us do. 

So I'm having a glass of wine and I'm making dinner and I'll wrap myself up in my family tonight. 

Preparation

 6 days to go. 6 days to wait and 6 to be uncertain. Although as you know well by now, it is a short lived sense of certainty. 

The lack of stress of the last few years has meant that I dealt with it all so much better. I'm sure the sun helps too. I've been looking after myself in some important ways, I have cut down on my daily drinking massively and I sleep so much better for it. I have begun to take vitamin D supplements because I am not getting my daily dose of sun here. I'm trying to do weights a bit, I don't do a lot or often but I am doing some. I am thinking about how to get more fitness in. I eat well. I eat a varied and mostly vegetarian diet. I have never smoked. And despite this my body will do what it wants anyway. I'm aware these measures are, for me, much more about how to make my body recovery ready. 

The news about a young girl having a successful stem cell transplant and kidney transplant made me smile. Not that I suspect that would be me one day, but more that we - the human race - keeps finding ways to make life last and last well. 

I am expecting either, all stable let's scan in 6 months or, it's about time we thought about taking out those kidney tumours. I'm expecting a potential cerebellum tumour. I feel wobblier than I have before. I'm not expecting anything more than that. Ha - that's a VHLer - the good news of nothing is killing you right now. Come back in 2024 and we'll see how that year will be. 

I am trying not to feel the stress of not having a job and the fear of unpaid sick leave. Can I sign on when I'm off for surgery?

I'm letting myself enjoy the happy moments in life, singing in the kitchen with my girl, eating great food and treating myself to new shoes. I think tomorrow I'll do a bit in the garden. I will possibly buy more shoes. You can't have too many. 

Spanish football

Last night, the women - my girls included, talked about our experience of misogyny. I said and know to be true, that have forgotten more experiences of it than I remember. 

The issue with the Spanish team is really bugging me. The blame, the phrases the man is using. That it is becoming a decisive issue for some.

I'm angry with no way to stop it and all the rest of the times. 

When will it stop?

FFS

HR rules

 I've got my clinic appointment through, at the end of September. I spent a few hungover moments this morning having a small panic about that and figuring out if I should or shouldn't tell any potential employees about my (currently fictional) operation. 

I know that it would be classes as a protected characteristic so they can't not employ me because of it but if I tell them then they might and if I don't they might be really annoyed when I then tell them. 

Remember that I don't even know if I do need surgery - I'm just having a planning ahead worry session. 

low

My mother in law is worried about me. She's spent a couple of days here and I suspect she can see a version of me that I really don't want to be. I told her that, 

I'm finding it hard to motivate myself to get out of bed. I didn't want to start the garden. I can't buy things, when I do I feel like they don't look good. I'm getting low. 

Her suggestion of pills isn't one I can consider. I know they help others but the one time in tried it was horrible. And I'm not depressed - I'm a bit sad and I'm adjusting. It's going to take time. It's going to take some effort and I can do it. 

Part of it is the wait. The MRI has happened - but I haven't had a reply to when I have clinic - there emails to three different people and no reply. I don't even know the date of it. Some time in September. I might not be booked in. So maybe October.

I'm sure this is the year they say the kidney cancer needs to come out. 

I'm sure this is the year I have a new something.

I'm sure this is the year I have been ignoring, mostly successfully, for 6 years. 

My mind races, it sends me off into the worst fears, it runs towards the imagined conversations with new bosses. 

Starting at a new school - I've already reminded myself I need to find HR, go tell the school nurse about my hydrocortisone - make sure someone there knows what to do, in an emergency. Then the thing you have to do when you have a day off for clinic. I'm sure that's why my dad used to have us all seen in the holidays. Not just to not miss work, but to avoid the questions. 

Oh poor me! I can feel my frustration at myself. I could have more time. But I'm back to being on 6month stays of execution. I have technically been for years, I just haven't done it. My Catholic side is of course telling me it's my fault, you buried your head and now you'll pay for the fun you had. 

I fluctuate daily from happy to worried to anxious. But it is getting better. 

I just need that appointment. I can cope better when I know. 

my birthday month

August feels like a month to reflect and gather myself. I'm not sure I can this time. Waiting on results

Waiting on the way I'll feel in September

Waiting on the need to feel like we made the right choice.

I'm filling up my time.

Being back feels hard when I remember we're here now. 

It's done.

I'm here.

to be reunited

 I am being reunited with people who have kept me strong through hard times, I am enjoying the connection and closeness. I am also 'excited' to be reunited with my MRI machine tomorrow. I will get to lie in her cosy space and listen to her melody of bangs and clicks and I will then, in September know where we are. I will maybe get a sense of what the year ahead will really be about 

I've been toying with some ideas around taking a year out, of spending it not doing very much at all. And I would simply put in the gap on my CV 'cancer recovery' would it put some off, no doubt but others  - maybe would bump me up their pile. Maybe. This is just a small yet recurring idea. I still can't let go of the idea of going back to work, not least because we are not wealthy enough for me not to earn, my husband won't be getting a very well paid job any time soon. I can't imagine him suddenly needing or wanting to earn more. Would those who saw the gap think that I'm fully cured, all done, a once in a life time awful experience? Because I think a lot of people see cancer as a one off thing, one that can come back but often I've had cancer. Maybe not these days, maybe people know it isn't so simple. And that's partly because there are more people surviving the first one, maybe the second one too.

And here I am just assuming that I'm only worrying about my kidneys - and I am. But of course I know another little bit of me could be slowly fucking up, could have a new brain, spine, pancreas, spleen, liver and maybe even an ectopic one somewhere. Could. 

I've been conscious too of the age of my body, hearing a pal support another woman, 50, who has just had surgery, the recovery is just harder the older you are. You don't bounce back in quite the same way, 6 weeks is not the whole story. 

Letter on the table

 When we got back, less than 5 hours ago there were flowers and 2 letters in my familiar yet unfamiliar kitchen. 

One was for my daughter and one was for me, And even though I'd asked my mum to send it I was still a little taken aback when I realised it was my scan letters. 

I'm tired and grumpy and it's muggy. Thank god I could have a cup of tea. 

End of an era

 This evening I set a fire and opened a bottle of wine that my yr 12 class bought me as part of a leaving gift. I danced in the front room and looked around at all I'm leaving and I felt a soft contentment. 

Who knows what the next chapter will hold, I only know it will have ups and downs. 

The comfort of going home and the people I will see and love is making these last few days so much easier. I have my worries, I have my mild anxiety but they are not overpowering. 

Soon we go, go home and we'll find out about that when we get there. 

today is bitter sweet

Here it isn't father's day. But it is in the UK. 

And I know I would have loved to see him. Talk to him, probably get frustrated by something. He would probably have run over by feet or spilt something. I would have taken time to adjust to understanding his speech. But I would have been able to ask him questions. That's what I miss the most I think. 

Just asking him stuff. 

fellow VHLer on Instagram

 I feel and affinity with a complete stranger, and have been happy to see her comment on my posts. She looks to be my age, think she has kidney issues too. She has a face not dissimilar to mine and hair of a equally enhanced shade of blonde. But more of course she speaks in a way I can connect to. Someone who gets it. Someone I hope I can support and share this all with. 

Don't even know her name 

I'm a worrier and a warrior

I have been on a hen do, with some lovely women, each of us have been through trials and tribulations. None of us are coming out of this unscathed. As we get older the more events happen that shape us and more define moments too. 

We talked a lot, us women, about the way marriage is a task. It's often hard work. I feel a little for the hen, but she took our wisdom in good grace, saw that each of us married ones have been through the ups and downs and she knows. She is not daft. There is not fairy-tale ending. 

My husband has helped me with what I know is a life long affliction of being a worrier. As I woke next to a woman I have never spent an evening with let alone a bed with we talked about how we slept. Badly, of course, different bed and too much alcohol. I told her about my habit of worrying and it's mostly a voice that hits me hardest in the small hours of the morning. 

As I explained this, the ways I deal with it, the self doubt, the nastiness my voice can be and how I have tamed her, I was able to see three things and slightly articulated them. 

1. I've always done it as long as I can remember, my parents would try to help me, a worry book by my bed to write them in, the letters I would leave on their pillows so I could get it out of my head. 

2. It makes sense to be a worrier when you know from before you even know it that your dad has a disease that gives him brain tumours (I was less aware of the others) and that you and your brother probably have that too. Having annual check ups, clinic appointments and then the scans, annual results. They did a good job of underplaying it, of making a family joke of the massive bottles of piss we collected for 24 hours once a year in our bathroom. The Dr that once checked if I had pubic hair by simply pulling my knickers down a bit while I lay on a bed. The change to a big hospital, Addenbrookes when a specialist was found. The eye scans of old, the yellow glow of skin and piss. The journey back through East Anglia, back to the coast with the words ringing in your head, angioma, pheochromocytoma, hemangioblastoma. Surgery, monitor, growth, tumour, cyst, partial nephrectomy  and never really knowing the difference between them all until you then do. 

3. My husband has helped me worry less, talking it through, refocusing, allowing me to fear the worst and then concentrate on the likely and the hopeful. 

and as I reflect on that now I see a 4th.

4. I am a warrior 

telling my story

 I had a fascinating chat with a colleague, we discussed all things kidney. 

I will be pleased when I get back into the scan flow - I am pushing my luck. 

But I'm glad I have, it was the right thing to do

VHL awareness month

And the month that my dad died in. 

I'm missing knowing he's alive and I'm feeling so deeply sad. 

Right now my life is very unsettled and I feel all sorts of vulnerable. 

So much so I'm annoyed by things I can usually rise above. 

I'm annoyed by things that I really just shouldn't be. 

I'm annoyed I don't get to see him - the healthy well him. 

And I'm so sad. 

I'm lost at sea. 

VHL - is it rare?

 My pal's brother has had to have emergency surgery - hemangioblastoma in his cerebellum. They have suggested he gets tested for VHL.

Small genetic world. 

His father is unknown - he is probably the carrier- too long a go to have been my brother. My pal's half brother. 

My brother was always told he couldn't be reckless. 

He never was, we think. 

Imagine if he was, a niece or nephew. 

triggered

This morning as I waited for my husband to get ready so we could go to breakfast he was listening to a podcast and a female surgeon was talking about the sexual harassment she and many others have experienced. What she described and talked about brought back my fear and memories of the times I've felt afraid and abused at the hands of medical professionals. 

Some minor moments of not being listened to, the lack of knocking on the door, the assumption that they can do things to my body without explanation and care. 

And the harder ones, the time I knew I was being sexually touched by a male nurse doing an ECG. I didn't know how to report it. The time I was treated like a slab of meat and my pubic hair shaved in a hurry without care to get the job done. Being hurt and told it didn't hurt  The moment I wondered why I had bruises in strange places after surgery. After my c-section having a man shove his hands inside me, remarking that I shouldn't be able to move my legs that much as I squeezed them shut, he hadn't warned me. 'A sweep' he said as if it was the routine I should have expected it. 

Perhaps I have more of these than most being a frequent flyer - I'm mostly very happy. 

The women said she hadn't experienced much in recent years, sighting that she had changed. I too became hardened to the system and found ways to protect myself. To ask for what I want and hold the gaze of the medical staff who thought they knew better. Until they could justify why they did. Asking why the door wasn't knocked, pointing out my rights. Requesting my family are informed and having someone with me. 

But still I cried as I explained my memories to my husband and felt it all again. My vulnerability each time I go. My need to meet the surgeon and know that he's (all but one have been men) a good guy. 

And the light is being shined on this - good. 

#metoo

I miss him

I'm really missing my dad. This week I've dreamt of him often. I've woken up crying and I've sensed that he's not here. 

He's the only one who really could know how I feel some days. No one else, not even those with the same disease.

I could always ask him.

I could always tell him

And he's gone. 

I'm feeling empty and today a little bit afraid. 

The death if Ros. 

Another one gone. 

I'm wondering who will be next. 

You weren't my aunty but you were

 I didn't even know she existed until my brother stayed with her and my mum's cousin Tim. But I didn't register that, a couple of names of relative who lived in London. 

Then as a 21 year old I was suddenly in need of a place to stay and not just for a night but for months and she and Tim said yes without any reservation. And how she looked after me, how we talked, Ros was such a generous person, with her care and love and often her clothes too, she was forever trying to give me items she had decided she wouldn't wear again. 

She cooked the most fabulous and flavourful lamb shank I have ever eaten and her roast dinners were divine. I ate so much while living with them, I ended up the heaviest and plumpest I have ever been in my life and I include my time being pregnant in that calculation. I couldn't resist that early evening G&T and the expensive and quality wine while we ate. 

If you haven't trained to be a teacher you won't fully appreciate how hard that first term is and She and Tim looked after me and made it a much easier experience. We stayed in touch over the 20 plus years that followed, they coming to us and being there not long after my little girl was born. We caught up whenever we could, at least once a year until COVID stopped so much of that and I so hoped that in July we would take the trip out to St Albans to see her and make each other laugh, I can hear it now, that slightly dirty chuckle of hers and how she would almost wink at me when my husband said something she thought was dirtier that it was! 

Passion fruit

 I can leave Malawi content as I have harvested some passion fruit. 

This little moment matters to me, not leaving something undone. 

I don't really know why but it does.

Leaving behind a legacy of fresh, passion for others to enjoy. 

I perhaps want that on my grave stone. 

Searching for what should make me happy

 I am increasingly relying on fate and not sensible planning. I have applied for a maternity cover - the Headteacher was very nice but I got the feeling I'm not what he's looking for. I might be wrong. I've seen another role I think I'd love, but then I feel that clawing doubt that I won't get it, been out of it too long. The news schools might be shut here for longer so frustrating and unnecessary for us and other schools too.  And with the devastation around me, the giving of stuff to those who now have nothing, and those who had almost nothing anyway it just doesn't feel important. 

And yet it is and it is my life and I want to be happy. 

With this sense I'm aware as well that I'm taking a gamble with my scan dates. I'm willing it all to be ok and waiting for July and not thinking about it, but of course that's a lie because I am thinking about it, often and I push it aside. My husband hugged me yesterday, he held me tight as he cried because he had seen a woman and a small child sat with almost nothing, a small cloth with what were probably all their belongings. He went to them and gave them the money he had in his pocket and some food he had bought for other people. As he held me I thought about my kidney! Imagine that, I thought about what is inside me and if it is growing and if it might kill me. The two things at the same time. Such is my privilege. 

Today he has gone off to help again. We have a 4x4 and he's using it to help. I'm here, offering people our shower - people who are used to hot showers when they want them. Not much is it. I'm not sure how I feel. But I know I want to be happy. 

adults think they know everything

When I was about 18 I went to a odd hotel in Great Yarmouth. It was too see if I deserved an arts sponsorship to get to arts school. 

I didn't get it. 

One of the panel + they were all grown up. They were adults. They didn't believe that I could have experience grief or pain. 

Fools. 

Those were some of my darkest days. Those were hard, my art was raw and amateur and real. 

Today I am less of the artist that I was then. 

home is where the heart is

 I am home, in the Warm Heart of Africa. It certainly felt odd. My heart is split and that might never change.

I understand why I'm feeling this way, I don't feel like I am in either home properly, it's a strange transition and one that I don't want to waste on feeling befuddled and feeling sad about. This morning, having grabbed a grapefruit from my tree and had it for breakfast, reminded me to love each moment I can and take it in. 

I've seen people who are leaving find fault and tell themselves it will be so much better somewhere else. It is different but not better. Some things are lovely to leave behind and some things are not. 

I was struck by the huge difference in my friendships  between the two places are very different. It was lovely to see everyone here but really only one person has a piece of my heart. But in the UK I have a bundle of people with whom my heart has grown. 

My heart is my little family - my little girl who is so tall. And so I'm here with her, my heart. 

The magic cure isn't as magic as I thought

 The last few days I've seen posts from people who have not had the miracle cure from the drug that they and the rest of us were expecting. Tumours re-growing once the medication stopped, having to still have the kidney removed despite the months of side effects. 

It's making me feel a bit sad and I begin to spiral into the unknown future. 

I need to focus on something else 

last chance - well it's not but it feels like it

When the fates allow it I will look back and use these last few weeks as a lesson in keeping on. I feel so utterly supported by so many people in my life and I'm sure if it was based on that alone I would have smashed it by now. 

My husband doesn't take things personally which I admire and try to emulate. He has a good philosophy on this. I wasn't the only one disappointed - only one person was happy. 

So now to revision on the next thing... 

Maybe this is the one 

harder than I thought

 I've been very tearful today and finally had a good cry.  Simply put, although I know it's the right thing to do for so many reasons, I don't really want to be doing this. It isn't helping that I miss my family loads and that they are in the sun and I'm in a jumper. 

I was just, essentially, coached by my clever and logical husband and decided to put my energy into the job I want more. I have no idea if that's the right choice. If I could I would fly back now and just accept I don't have a job. I want so much to hold my baby girl and be held by my man. 

It's hard to maintain the joy of London when I want to be sharing it with them. 

Tonight I want to sleep well and prepare and feel as ready as I can. 

I want to be able to do my best. 

I want to be appreciated for all I can offer. 

I want to want the job. 

I wish I was better at finding out what I want. 

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.