looking after myself

 I know I say it each time - I say

next time I'll take off all the time I need and do a proper phased return. And then I just find ways that that won't fit, or work, and I try and do too much too quickly. I think that because actually every time it's worked out fine in the end. No accidents, no relapses and no long term damage I must tell myself it will be ok. 

This time I'm making a compromise with myself. This time I'll do some of what I probably shouldn't and some of what I should.  My new work are being fantastic. And I've asked for and been sent the first week plan and it looks super chilled, with me not needing to teach much at all. 

It is 7 weeks tomorrow. The pain in my neck remains and is mostly a very slight pain that I am conscious of most when I think about it or do something like lift a heavy pot, fill the kettle, garden, empty the bottom draw of the dishwasher. If I hold my head up for hours then I feel the relief when I rest it. The fizz happens less, but is still there. My hands don't feel the same and neither feels like they should. 

I haven't driven yet but I am ready to try. Stupidly though I'm nervous to interrupt my husband to see if he will take us to a big carpark so I can have a go. I'm mainly worried that although I know I haven't lost any movement or strength in my legs that somehow when I press the pedals it won't feel right. I'd lost a bit of parking confidence last year and I really don't want to lose anymore. 

So here we go again, another post surgery return to work. Another part of the recovery cycle. 

Then 2 hospital appointments in September - and I suspect and MRI no one has booked in yet! 

when the world shrinks

I'm used to being independent. One thing I don't miss about Malawi was I didn't ever truly feel that. I needed more people than I would have liked. Not needing people was a theme of my youth. Want them, yes but not need anyone. Each relationship a choice. 

Surgery and disability take some of that independence and at I'm not 6 weeks I'm allowed to gain a little back. The pain in my shoulder persists and the aches come and go and get worse in the evening. The fizzes continue but not at much. 

Next step the car. If I can drive I can feel me again. 

Then work. 

If I can work I'm me again. 

So is that who I am? 

I will always remember you

I didn't know it on the day but a treat ago you lost your battle and I lost you. 

You'd sent me a happy by text a few days before. And I hadn't heard from you. And I never will again. 

It has been hurting all year. 

Your letter told us it wasn't our fault. It wasn't yours either. But my god I wish you'd have called me. I'm not sure it would have changed much. The date you did it maybe. 

But I would love to hear your voice again. 

I'm singing more again now. I can listen to us without crying every time. 

I miss you. 

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.