I couldn't say your name

I sang one of our songs today, it was strange and wonderful. The audience got it, I gave context of the joke in it. It was very well appreciated. It was different - he played piano. We didn't do the harmony the same way. You weren't there. 

I gave you credit but I couldn't say your name out loud. I wouldn't have gotten through it if I had. I practiced saying you're name on someone earlier and didn't get far. We wrote it over 25 years ago.

Nothing will ever replace you. But I hope you are happy I sang our stuff. I might do more. 

Love you and miss you

oncology

It's a word you know, when you know, you know. 

At 19:23 on a Tuesday evening, just as I decided to sip the last bit of wine offered by my in-laws - I check my phone. Not expecting much. Perhaps a little love from one I love, perhaps an excited emoji from my child who I get to see tomorrow. But no. 

An appointment I'm not expecting - oncology. My husband intends to comfort me with, you haven't had any scans or anything.. His mother beats me to the reply - yes she has, an MRI just last week. 

Me, pulling the tears in, no, it can't mean anything. Out loud - it won't be that I've got cancer. Her face, my fear and his logic. 

No, because my surgeon said it wasn't cancerous, as expected an hemangioblastoma. Ummm. Well why then? This isn't part of the routine, this is a different ward. This means a day off work. This is not expected. I repeat - not in my expectations. 

I try not to let the worry creep in. 

Now what? 

Can I call and just check... I think you're inviting me for a thing I don't need/expect. Probably a waste of money for all concerned. I have clinic in January - I'm very good at waiting. I don't know who wants to see me and why. 

Who are you? 

What's this? 

Oncology - not a word anyone wants. 

new MRI

Adding another one to my list. The hospital is snuggled into the streets of London. A smaller place with art on the walls and good enough signage. I was earlier than they asked for but still after the sign that said - open 8AM. I could hear then behind the shutters - we all could, those of us who had risen on a Sunday morning. Waiting. 

The time clicked on easily and quite soon the next bit. The form. The questions about the form. The necessary checks. The description. The technical issues. 

The short wait. 

Repeat questions and checks above. 

In - not changed... I really like it when I don't have to put a gown on

Canular in. 

Into room and lie down. 

Think of Malawi.

Almost fall asleep. 

Injection.

More banging.

Done.

Out - canular out.

Then the hardest but, trying to find the best way home on a Sunday. 

missing

Grief, that ball bouncing around, hitting and hurting. The graphic of that circle starting small and then getting bigger. I've only thought of it as one ball before. But actually there's loads, loads of circles, for different things and they hurt in different ways. This evening I've suddenly been hit by my Daren one. Missing him deeply and painfully. Missing my little girl softly and securely. Missing what could have been with someone who I now know in a totally different way. Missing my job security. Missing my life in Malawi. 

But I'm not alone. 

it will end

It is 3 calendar months. I have swum and lifted weights. I have got to a stage where I'm not always aware of the pain. I'm traveling to art therapy. I'm feeling like I can tell the pain might I've day not be there. 

I have driven for over 3 hours in one go. 

I don't feel tried from it in myself although my neck still does at times. I know there will be an end. Or I hope when a sense that it's got an end. 

Visiting

 The tables turned, me finding the right ward, asking 'do you need anything.' half knowing that question involves more than a simple answer. Sitting, seeing your friend put on a brave face, watch her tell a nurse she's well when she's just confided she is in pain. And then, saying the things, doing the bits, offering to get stuff, move stuff, help with sheets. And then watching her fall asleep, grimace on her usually joyful face. And sneaking off, knowing how annoying it is if you've fallen asleep to be woken but taking a small parcel of guilt with you that you haven't said goodbye. 

I tried to judge what would be useful to say, I decided on a reminder that this will change and the pain won't last forever, while still acutely aware my pain hasn't gone yet and it's one hell of a long journey. Those, seemingly statutory 6 weeks until, spreading into the longer, perhaps more subtle things that never leave you. the scar, the discomfort, the worry, they memory of no memory and the fear of it all having to happen again. 

I walked out of the familiar smell of the ward, same wherever you go and into the air of London and the tube, home to my safe place and my man. Knowing she can't and knowing she isn't even sure if she wants to be home yet while definitely not wanting to be where she is either. 

hospital

Surgical review today. Feels almost pointless - except I'll maybe get some reassurance about the ongoing pain. But I'd fault just keep trundling along with it. No fuss. 

a book

I've just finished a book that's made me think and feel. 

I usually read to not do those things. 

But I also loved it and just want to fast forward a few months to a time when I think I'm going to be well and happy. 

I never normally want to wish my life away. But today I am not looking forward to my daughter leaving. I'm feeling like this next little bit of life is going to be sad.

I am feeling sad and unsure. 

I don't like it. It's not who I tend to be. I don't think. 

sadness

 I am feeling sad, I crave security and I have so much of it but at the same time it feels like dry sand in my hand. 

I have so much and yet I have this feeling of mild fear that I am trying not to let get out of control. The fragility of all I do have, I am trying not to worry, trying to see the possibilities but keep coming back to the dull ache of 'but what if' 

So many times in my life I've had to face adversity. I am tired of it. I want interesting but not peril. I want fun not fear. 

RTW

 For once I am taking my own advice and I think partly why this is possible is due to the level of support I feel from the colleagues around me. I am doing a proper phased return, And today I knew I would have been able to stay longer but I also knew that would mean I would be in pain all evening. So I went home when I had planned. 

I am proud of myself for doing this. I am grateful that I can and that I have a sensible sense of myself and what I should be doing. 

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.