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 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 net 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 lot of stuff cut out of me. That isn't an easy journey and it isn't nice or easy 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. 

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.