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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.