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. 

Preparation

 6 days to go. 6 days to wait and 6 to be uncertain. Although as you know well by now, it is a short lived sense of certainty. 

The lack of stress of the last few years has meant that I dealt with it all so much better. I'm sure the sun helps too. I've been looking after myself in some important ways, I have cut down on my daily drinking massively and I sleep so much better for it. I have begun to take vitamin D supplements because I am not getting my daily dose of sun here. I'm trying to do weights a bit, I don't do a lot or often but I am doing some. I am thinking about how to get more fitness in. I eat well. I eat a varied and mostly vegetarian diet. I have never smoked. And despite this my body will do what it wants anyway. I'm aware these measures are, for me, much more about how to make my body recovery ready. 

The news about a young girl having a successful stem cell transplant and kidney transplant made me smile. Not that I suspect that would be me one day, but more that we - the human race - keeps finding ways to make life last and last well. 

I am expecting either, all stable let's scan in 6 months or, it's about time we thought about taking out those kidney tumours. I'm expecting a potential cerebellum tumour. I feel wobblier than I have before. I'm not expecting anything more than that. Ha - that's a VHLer - the good news of nothing is killing you right now. Come back in 2024 and we'll see how that year will be. 

I am trying not to feel the stress of not having a job and the fear of unpaid sick leave. Can I sign on when I'm off for surgery?

I'm letting myself enjoy the happy moments in life, singing in the kitchen with my girl, eating great food and treating myself to new shoes. I think tomorrow I'll do a bit in the garden. I will possibly buy more shoes. You can't have too many. 

Spanish football

Last night, the women - my girls included, talked about our experience of misogyny. I said and know to be true, that have forgotten more experiences of it than I remember. 

The issue with the Spanish team is really bugging me. The blame, the phrases the man is using. That it is becoming a decisive issue for some.

I'm angry with no way to stop it and all the rest of the times. 

When will it stop?

FFS

HR rules

 I've got my clinic appointment through, at the end of September. I spent a few hungover moments this morning having a small panic about that and figuring out if I should or shouldn't tell any potential employees about my (currently fictional) operation. 

I know that it would be classes as a protected characteristic so they can't not employ me because of it but if I tell them then they might and if I don't they might be really annoyed when I then tell them. 

Remember that I don't even know if I do need surgery - I'm just having a planning ahead worry session. 

low

My mother in law is worried about me. She's spent a couple of days here and I suspect she can see a version of me that I really don't want to be. I told her that, 

I'm finding it hard to motivate myself to get out of bed. I didn't want to start the garden. I can't buy things, when I do I feel like they don't look good. I'm getting low. 

Her suggestion of pills isn't one I can consider. I know they help others but the one time in tried it was horrible. And I'm not depressed - I'm a bit sad and I'm adjusting. It's going to take time. It's going to take some effort and I can do it. 

Part of it is the wait. The MRI has happened - but I haven't had a reply to when I have clinic - there emails to three different people and no reply. I don't even know the date of it. Some time in September. I might not be booked in. So maybe October.

I'm sure this is the year they say the kidney cancer needs to come out. 

I'm sure this is the year I have a new something.

I'm sure this is the year I have been ignoring, mostly successfully, for 6 years. 

My mind races, it sends me off into the worst fears, it runs towards the imagined conversations with new bosses. 

Starting at a new school - I've already reminded myself I need to find HR, go tell the school nurse about my hydrocortisone - make sure someone there knows what to do, in an emergency. Then the thing you have to do when you have a day off for clinic. I'm sure that's why my dad used to have us all seen in the holidays. Not just to not miss work, but to avoid the questions. 

Oh poor me! I can feel my frustration at myself. I could have more time. But I'm back to being on 6month stays of execution. I have technically been for years, I just haven't done it. My Catholic side is of course telling me it's my fault, you buried your head and now you'll pay for the fun you had. 

I fluctuate daily from happy to worried to anxious. But it is getting better. 

I just need that appointment. I can cope better when I know. 

my birthday month

August feels like a month to reflect and gather myself. I'm not sure I can this time. Waiting on results

Waiting on the way I'll feel in September

Waiting on the need to feel like we made the right choice.

I'm filling up my time.

Being back feels hard when I remember we're here now. 

It's done.

I'm here.

to be reunited

 I am being reunited with people who have kept me strong through hard times, I am enjoying the connection and closeness. I am also 'excited' to be reunited with my MRI machine tomorrow. I will get to lie in her cosy space and listen to her melody of bangs and clicks and I will then, in September know where we are. I will maybe get a sense of what the year ahead will really be about 

I've been toying with some ideas around taking a year out, of spending it not doing very much at all. And I would simply put in the gap on my CV 'cancer recovery' would it put some off, no doubt but others  - maybe would bump me up their pile. Maybe. This is just a small yet recurring idea. I still can't let go of the idea of going back to work, not least because we are not wealthy enough for me not to earn, my husband won't be getting a very well paid job any time soon. I can't imagine him suddenly needing or wanting to earn more. Would those who saw the gap think that I'm fully cured, all done, a once in a life time awful experience? Because I think a lot of people see cancer as a one off thing, one that can come back but often I've had cancer. Maybe not these days, maybe people know it isn't so simple. And that's partly because there are more people surviving the first one, maybe the second one too.

And here I am just assuming that I'm only worrying about my kidneys - and I am. But of course I know another little bit of me could be slowly fucking up, could have a new brain, spine, pancreas, spleen, liver and maybe even an ectopic one somewhere. Could. 

I've been conscious too of the age of my body, hearing a pal support another woman, 50, who has just had surgery, the recovery is just harder the older you are. You don't bounce back in quite the same way, 6 weeks is not the whole story. 

Letter on the table

 When we got back, less than 5 hours ago there were flowers and 2 letters in my familiar yet unfamiliar kitchen. 

One was for my daughter and one was for me, And even though I'd asked my mum to send it I was still a little taken aback when I realised it was my scan letters. 

I'm tired and grumpy and it's muggy. Thank god I could have a cup of tea.