Wednesday, April 30, 2025
3 months
Friday, April 11, 2025
gratitude
Thursday, April 10, 2025
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...
Monday, April 07, 2025
Crisis
Sunday, March 30, 2025
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.
Saturday, March 29, 2025
Am I breathing
Friday, March 28, 2025
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.
Thursday, March 27, 2025
nerves
Tuesday, March 25, 2025
reunion
Tuesday, March 11, 2025
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
Thursday, February 20, 2025
feeling things
Saturday, February 01, 2025
Daren had left the chat
Tuesday, January 21, 2025
if Trump is right...
Monday, January 06, 2025
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.
Tuesday, December 17, 2024
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.
Monday, November 25, 2024
bubbles of grief
Wednesday, October 30, 2024
community
Tuesday, October 15, 2024
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.
Friday, September 27, 2024
clinic
Sunday, September 22, 2024
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.
Monday, September 09, 2024
tribute
Saturday, September 07, 2024
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.