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. 

End of an era

 This evening I set a fire and opened a bottle of wine that my yr 12 class bought me as part of a leaving gift. I danced in the front room and looked around at all I'm leaving and I felt a soft contentment. 

Who knows what the next chapter will hold, I only know it will have ups and downs. 

The comfort of going home and the people I will see and love is making these last few days so much easier. I have my worries, I have my mild anxiety but they are not overpowering. 

Soon we go, go home and we'll find out about that when we get there. 

today is bitter sweet

Here it isn't father's day. But it is in the UK. 

And I know I would have loved to see him. Talk to him, probably get frustrated by something. He would probably have run over by feet or spilt something. I would have taken time to adjust to understanding his speech. But I would have been able to ask him questions. That's what I miss the most I think. 

Just asking him stuff. 

fellow VHLer on Instagram

 I feel and affinity with a complete stranger, and have been happy to see her comment on my posts. She looks to be my age, think she has kidney issues too. She has a face not dissimilar to mine and hair of a equally enhanced shade of blonde. But more of course she speaks in a way I can connect to. Someone who gets it. Someone I hope I can support and share this all with. 

Don't even know her name 

I'm a worrier and a warrior

I have been on a hen do, with some lovely women, each of us have been through trials and tribulations. None of us are coming out of this unscathed. As we get older the more events happen that shape us and more define moments too. 

We talked a lot, us women, about the way marriage is a task. It's often hard work. I feel a little for the hen, but she took our wisdom in good grace, saw that each of us married ones have been through the ups and downs and she knows. She is not daft. There is not fairy-tale ending. 

My husband has helped me with what I know is a life long affliction of being a worrier. As I woke next to a woman I have never spent an evening with let alone a bed with we talked about how we slept. Badly, of course, different bed and too much alcohol. I told her about my habit of worrying and it's mostly a voice that hits me hardest in the small hours of the morning. 

As I explained this, the ways I deal with it, the self doubt, the nastiness my voice can be and how I have tamed her, I was able to see three things and slightly articulated them. 

1. I've always done it as long as I can remember, my parents would try to help me, a worry book by my bed to write them in, the letters I would leave on their pillows so I could get it out of my head. 

2. It makes sense to be a worrier when you know from before you even know it that your dad has a disease that gives him brain tumours (I was less aware of the others) and that you and your brother probably have that too. Having annual check ups, clinic appointments and then the scans, annual results. They did a good job of underplaying it, of making a family joke of the massive bottles of piss we collected for 24 hours once a year in our bathroom. The Dr that once checked if I had pubic hair by simply pulling my knickers down a bit while I lay on a bed. The change to a big hospital, Addenbrookes when a specialist was found. The eye scans of old, the yellow glow of skin and piss. The journey back through East Anglia, back to the coast with the words ringing in your head, angioma, pheochromocytoma, hemangioblastoma. Surgery, monitor, growth, tumour, cyst, partial nephrectomy  and never really knowing the difference between them all until you then do. 

3. My husband has helped me worry less, talking it through, refocusing, allowing me to fear the worst and then concentrate on the likely and the hopeful. 

and as I reflect on that now I see a 4th.

4. I am a warrior 

telling my story

 I had a fascinating chat with a colleague, we discussed all things kidney. 

I will be pleased when I get back into the scan flow - I am pushing my luck. 

But I'm glad I have, it was the right thing to do

VHL awareness month

And the month that my dad died in. 

I'm missing knowing he's alive and I'm feeling so deeply sad. 

Right now my life is very unsettled and I feel all sorts of vulnerable. 

So much so I'm annoyed by things I can usually rise above. 

I'm annoyed by things that I really just shouldn't be. 

I'm annoyed I don't get to see him - the healthy well him. 

And I'm so sad. 

I'm lost at sea. 

VHL - is it rare?

 My pal's brother has had to have emergency surgery - hemangioblastoma in his cerebellum. They have suggested he gets tested for VHL.

Small genetic world. 

His father is unknown - he is probably the carrier- too long a go to have been my brother. My pal's half brother. 

My brother was always told he couldn't be reckless. 

He never was, we think. 

Imagine if he was, a niece or nephew. 

triggered

This morning as I waited for my husband to get ready so we could go to breakfast he was listening to a podcast and a female surgeon was talking about the sexual harassment she and many others have experienced. What she described and talked about brought back my fear and memories of the times I've felt afraid and abused at the hands of medical professionals. 

Some minor moments of not being listened to, the lack of knocking on the door, the assumption that they can do things to my body without explanation and care. 

And the harder ones, the time I knew I was being sexually touched by a male nurse doing an ECG. I didn't know how to report it. The time I was treated like a slab of meat and my pubic hair shaved in a hurry without care to get the job done. Being hurt and told it didn't hurt  The moment I wondered why I had bruises in strange places after surgery. After my c-section having a man shove his hands inside me, remarking that I shouldn't be able to move my legs that much as I squeezed them shut, he hadn't warned me. 'A sweep' he said as if it was the routine I should have expected it. 

Perhaps I have more of these than most being a frequent flyer - I'm mostly very happy. 

The women said she hadn't experienced much in recent years, sighting that she had changed. I too became hardened to the system and found ways to protect myself. To ask for what I want and hold the gaze of the medical staff who thought they knew better. Until they could justify why they did. Asking why the door wasn't knocked, pointing out my rights. Requesting my family are informed and having someone with me. 

But still I cried as I explained my memories to my husband and felt it all again. My vulnerability each time I go. My need to meet the surgeon and know that he's (all but one have been men) a good guy. 

And the light is being shined on this - good. 

#metoo