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.