Endometriosis

I've got that too.

I found out a few years ago, I had asked for investigation, because things had just silly having previously assumed for all of my period having life that it was something to do with having and not having babies.
As far as it goes it isn't so bad but of late it's been annoying.
Clots and confusion. That's my main experience of it.
I wonder if it is connected to VHL.
The professionals don't seem to think so.
Just another thing.
But it's fine
Always fine
It's ok everyone
It's fine
.

A sad day

My uncle died yesterday... he had cancer. Nothing to do with VHL. It's very sad. Cancer gets there, doesn't it.

All checked up and burden free

Dad and I had our annual review and phew, no surgery planned for this year. I know that this might change. Last year taught me that the very unexpected can happen with VHL, but hopefully this year will be OK.

Time and a diary

I write a diary to my daughter. I started it when I was told I had kidney cancer and that the operation was a difficult one. A nurse suggested I prepare, just in case.
I survived that and the next operation too. I write to her about her, how she is in my life and what we share.
I sometimes offer words of wisdom, but mostly I say how I feel and what we've been up to.
Recently the times in between writing it have become bigger, over a week, almost two. This isn't because I'm doing lots with her but that I'm busy with work, busy with things other than her.
I need to address that, I need to think about my family more and spend more b time making some memories.
She likes memories, she starts many a conversation with "do you remember when..." I dying know if that's normal for an eight year old but that's all life really is, making memories. Thing is, you have to do stuff to make them.
This Easter I intend to make a few fun, happy memories.

You shouldn't look up side effects

In a bid to be prepared for my consultation I referred to the trusty internet and as always went to Cancer research and NHS as I feel I can rely on them. Not great stuff, but there are very few good side effects. (the tan is one!) But now I'm thinking maybe I should have buried my head in the sand.
A shunt, swelling, severe headaches and more besides. Traditional surgery anyway... Side effects that could happen straight away, months or years later. All seem bloody horrible.
Loss of function, not being as focused as you were, concentration etc etc
Will I be allowed to drive... with that list I know I bloody wouldn't say I could.
This disease is such a pain in the arse.
Today I cried quite a lot. I  called my mum and despite her calm and sensible advice and warmth I know I worried her senseless.
'It's so hard mummy.' and 'I give up.' fell out of my tired mouth. I really did feel that way this morning. If I hadn't been invited to a party I might have had yet another sofa day.

I read a post on depression, so much of what the blogger talked of applied to so much of how I feel. I felt hopeless and lost this morning. This evening I'm looking up side effects so I know what to ask.

I understand why people talk about fighting cancer, it isn't like you can will your white blood cells to attack, it's much more about getting up and getting on with your life even when that is the last thing you want to do. The days are very hard. If I could switch my brain off for just a little while I might get some rest but even sleep doesn't offer me that comfort. My dreams are vivid and frighten me, I wake up crying, angry and afraid.

Perhaps that why when I feel there is a glimmer of happiness I run towards it, when there is a chance to feel numb I take it and when I need to I call my mum, sister or a friend. In spite of all of this I have them, I have that love.

Current list

Only if you are interested

1 cerebellum brain tumour - near brain stem
1 resected cerebellum brain tumour
3 spinal tumour
1 optic nerve tumour with full thickness macular hole
1 tail of pancreas
1 liver
1 left kidney cyst
2 right kidney resected through partial nephrectomy
2 adrenal gland tumours resected

what's that now then... 13 unlucky for some

Kidney Cancer no more?

Post op check up today and good news, no more cancer, well not in the kidney. That's the issue with VHL isn't it. No matter how happy we can be that that bit is done and dusted we know that won't be the end.
VHL will continue and so must we. Time is something I struggle with, how much have I got.
I know, I know, we all have that, any one of us could be hit by a bus... you'd have to be blind but it could happen. You could have a fatal accident with a tea cosy.
But VHL isn't likely to kill me, despite scaring the shit out of me from time to time. No, it is much more likely to destroy plans, ruin events and delay what I want to do.

Not many people get it, not many people live with a distrust of their own body.

I do

Who needs a spleen?

The next stage in the saga of the family's health.

Dad is having surgery in July; that is of course if that makes sense and as yet we don't know if it does. Those of you who know about the pancreas will also know that once it is gone for there is very little that can be done. The tumour that started in the tail of his pancreas is now very big, last scan it was 5cm. So who have surgery or not... not my choice and it would appear not really my father's either.

They will have to take out his spleen too. I'm fascinated by the fact that in these modern times you don't need a spleen. 1 extra little tablet will be added to his massive load anyway.

I'm in a spiral again. I'm trying not to dwell and not to let myself feel too caught up in it but I wonder most hours if he is going to make it through. The worst thing is I know that part of all of us, dad, my sister, my mum and me are aware that if he does die, as horrible as this sounds that may not be the worst outcome.

I don't want my dad to die but I also know how miserable his life is at times and I don't know how much more he could cope with. His body isn't his own, his life isn't his in so many ways and if he gets to be free again, well. I don't know how else to express it but I don't know how much more any of us can do.

This disease has made us all strong and weak at the same time.

My mum has to go through so much.

eyes and eyes but no one is looking

just that I notice it and I notice it every day. Nothing will change I suppose.

ummm

caring

The last three weeks have been difficult. I’ve been to the various hospitals that plan to look after my dad and I’ve cared. I hope and pray it doesn’t happen to me and feel such a swell of relief that it can’t happen to my child through VHL, but I have.

Putting a nappy on your dad and the n going home to pt one on your baby girl pushes irony to its limit. I fed him his soup, I have washed him I have helped him clean his teeth. I have listened to him try and articulate his thoughts and feelings.

My father is a wonderful man and he should have been loving this time of his life. He should have been able to relish his retirement. He gave all he could to his job and I never in all those years felt neglected or that his work came before us, ever. I was a very lucky girl because both my parents worked but I was always of the opinion that we, their children, were the most important people in the world. We still are. I really hope my child feels the same when she is 30 and 15 for that matter.
When are you allowed to let old age take the blame for what happens to you?

VHL is getting all the blame so far.

Well it deserves it.

So ugly

It has been a while and VHL has grown so ugly.

My father has been in and out of hospital and each time it is worse and more horrid. No one seems to know anymore he's drifting backwards. It is strange to watch my daughter now 10months growing in confidence and ability, learning to feed herself, pick up the tiniest objects and soon she looks like she'll walk unaided.
And my father, my dad is loosing all of these natural gifts. He can't hold a pen, phone, comb, toothbrush... you get the idea. And as my little one continues to babble on and experiment with sound he becomes slower and harder to understand and the cruel cruel truth that his brain, the thinking him part is still as able as it ever was. I know he was terrified of getting Alzheimer’s as his dad did before him but this is so much worse.

I hate it. And the guilt and the worry, will that be me in 20 years will that be my daughter. We find out the test results soon, we’ll know the 50/50, we’ll know the horrible or wonderful truth. And yet more guilt, that I can’t stand going in to see him. Once I’m there I’m so pleased but the effort the drain the walk the tube the everything.

But I love him so much and it is the very least I can do.