It was that time of year again, I expected to wait a long time to be seen but I wasn't worried because I'd had a letter, nothing new. Thing was I did find out something new, kidney cysts. I emphasize cysts because importantly they are not tumours. And here is where the advances in medical science come into their own. The context of this is when I was at university I was told that an ultra-sound had shown problems with both my kidneys and that could mean both having to been removed, dialysis and if I was lucky a transplant. This week I asked tentatively, 'and if they did what would the treatment be.' The answer was in short, a tablet.
phew
Friday, November 07, 2008
Tuesday, September 02, 2008
my turn?
Tomorrow I have my annual MRI scan, it is usually a long one. I feel like this time I might not get away with the - I was getting used to - all fine, two little ones but nothing to worry about. I feel like that because recently I've experienced pins and needles in my right hand. Nothing major, could be something else but there all the same. It brought back the memories of my heavy hand. The one I knew was a brain tumour.
It is doing it now in fact. My body, telling me it could be my turn again.
I've been hospital/operation free for nearly 8 years. Actually that's not strictly true because I had a C-section to have my beautiful and VHL free daughter.
But then again I thought a tingly toe might have been more sinister than the grumpy toenail it turned out to be. Maybe this is a case of a tight watch or bra. Perhaps too much typing on these things. A nerve that's going through some changes and unless it really does need taking out, my fictional tumour, I won't know until my appointment in November.
I wonder if I could call and ask.
Should I?
It is doing it now in fact. My body, telling me it could be my turn again.
I've been hospital/operation free for nearly 8 years. Actually that's not strictly true because I had a C-section to have my beautiful and VHL free daughter.
But then again I thought a tingly toe might have been more sinister than the grumpy toenail it turned out to be. Maybe this is a case of a tight watch or bra. Perhaps too much typing on these things. A nerve that's going through some changes and unless it really does need taking out, my fictional tumour, I won't know until my appointment in November.
I wonder if I could call and ask.
Should I?
Sunday, August 24, 2008
Crosswords
My Dad is in again, it feels like he has been like this for so long but really it is only 18months and it is steadily getting worse. So much worse.
We manage to do the crossword together and this is one of the few things that doesn't make me feel like I'm looking after him, although I do fill it in as his handwriting is very bad now too.
The frustration he must feel spills over sometimes but considering he really seems to be coping well. I don't think I am. I've been very tearful recently and I am getting cross with the medical profession. They offer hope but is it false hope, does this really help anyone?
Being the one who does so many things for him is very hard. He's my father and he is too young to be treated like a child.
We manage to do the crossword together and this is one of the few things that doesn't make me feel like I'm looking after him, although I do fill it in as his handwriting is very bad now too.
The frustration he must feel spills over sometimes but considering he really seems to be coping well. I don't think I am. I've been very tearful recently and I am getting cross with the medical profession. They offer hope but is it false hope, does this really help anyone?
Being the one who does so many things for him is very hard. He's my father and he is too young to be treated like a child.
Friday, May 30, 2008
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.
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.
It ends here
I remember when I was a teenager and first embarking on a serious sexual relationship when I realised (or was reminded by my parents) that getting pregnant was a bad idea, not least because I was a teenager but also because of the 50/50 odds of VHL. ‘It ends here’ I thought.
My brother, the other member of the family who had it was dead and my dad,well as you know, he had had a vasectomy as soon as they knew it was genetic. I really felt that I was the only one left, the only person with this horrendous and murderous disease. And that was a decision I made. No babies with anyone, until I met my partner and I really wanted a baby.
And now I have one.
Since the moment she was conceived I felt guilty, my own desire and pleasure of a child and I was certain I had given her this disease. I knew, deep down that she had it, told myself she had it, was waiting to hear it officially but knew.
You know?
And there we were, dashing from Euston Square to Great Ormond Street all to hear what I knew and what my partner knew and then the Dr said. ‘I have some good news for you.’ And my gut and my instinct and my Catholic guilt evaded me, left me, put up their strong arms and gave in.
She doesn’t have it, she is free.
It ends here.
Unless I get pregnant again of course and then we play fates game all over again.
PS
once when i was in Rome i walked through a gateway that I seem to remember a nun saying that if you went through in a state of grace you got what you prayed for. I was selfish with my prayer but thank God I was.
My brother, the other member of the family who had it was dead and my dad,well as you know, he had had a vasectomy as soon as they knew it was genetic. I really felt that I was the only one left, the only person with this horrendous and murderous disease. And that was a decision I made. No babies with anyone, until I met my partner and I really wanted a baby.
And now I have one.
Since the moment she was conceived I felt guilty, my own desire and pleasure of a child and I was certain I had given her this disease. I knew, deep down that she had it, told myself she had it, was waiting to hear it officially but knew.
You know?
And there we were, dashing from Euston Square to Great Ormond Street all to hear what I knew and what my partner knew and then the Dr said. ‘I have some good news for you.’ And my gut and my instinct and my Catholic guilt evaded me, left me, put up their strong arms and gave in.
She doesn’t have it, she is free.
It ends here.
Unless I get pregnant again of course and then we play fates game all over again.
PS
once when i was in Rome i walked through a gateway that I seem to remember a nun saying that if you went through in a state of grace you got what you prayed for. I was selfish with my prayer but thank God I was.
Wednesday, May 14, 2008
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.
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.
Friday, January 25, 2008
radio silence
It has been a while and this is partly due to me now being the proud mum. As far as VHL is concerned I have been given the all clear for another year, my tumours are the same as they were before. The VHL hits hardest where my dad is concerned, he has decided to retire through ill health and this disappoints me. I'm sad that he isn't going to carry on but I do understand why. He seems more angry than ever before, his gentle nature is being destroyed by the disabilities he is now facing. I could go on but my baby is about to eat a big bit of paper!