Something strange is afoot here in England town. The VHL community as it is in the UK seems to be having a hostile takeover.
I've no idea what's going on but I'm interested.
"What do groups do for you?" My mum never wanted me to be a member of any group but there I go on Facebook and other places to hear what others, like me know about it all.
Why do we do it?
I always felt so very alone when I was a teenager and at a drunken night near a computer with internet access I searched. I'd never done it before I didn't know it would exist out there in the world wide web but it did and there was so much information. I was at university at the time. I hadn't used a search engine for much before.
And now I wait to know the next steps of information.
Does it help. Dunno but I don't think it harms.
Thursday, August 23, 2012
Monday, July 30, 2012
Out and not cancer
All done and he doesn't have cancer.
It's hard to explain but it was very difficult to be by the bedside for so long. Difficult in ways I hadn't expected.
It's hard to explain but it was very difficult to be by the bedside for so long. Difficult in ways I hadn't expected.
Tuesday, July 10, 2012
Pancreas out - well not all of it
My dad did well today. He let them take out his spleen and most of his pancreas and the tumour to go with it. He is awake and at times smiling.
Phew, phew and phew.
Phew, phew and phew.
Monday, June 11, 2012
what would you do if time ran out at 49?
An odd letter came for me today. Those of us who know, know that the print from your hospital when you don't have an appointment due is likely to take your breath away.
I have a new Dr now and I've asked to know my life expectancy. Not because I want to know but because for our plan to adopt we need to be able to tell any adoption agency (at least all the ones we have asked)
I have always been aware that I don't technically have as long as a 'normal' person but I assume that would be about 65. When our current government changed the retirement age I wondered if I would ever get to it. My father has had to through ill health. Money wise thank god he had his pension because he needs it. Will I see retirement, not according to the medium life expectancy?
I quote
"The actuarial life expectancy of patients with Von Hippel-Lindau is 49 years of age. More recent data suggests that those patients enrolled in the screening programme can expect a life-expectancy of 52 years median." There is more, about renal cell carcinoma which I don't currently have and now I might live longer...
Shit.
Friday, June 08, 2012
List of tumours to date Lovely VHL
1 optic nerve
2 spine
1 brain
1 liver
1 pancreas
2 kidney
8 then? Well that's what the last set of scans said but you know how these things are, I may well have grown a few since then.
I even forget some of them now. I bit like distant sexual encounters!
3 removed
So that's 11 in total.
"Count your blessings not your tumours" Someone said that to me... I didn't expect them to. I felt like telling them to fuck off because I'm not counting my tumours to feel sorry for myself, I'm doing to prove how strong I am.
And I am.
2 spine
1 brain
1 liver
1 pancreas
2 kidney
8 then? Well that's what the last set of scans said but you know how these things are, I may well have grown a few since then.
I even forget some of them now. I bit like distant sexual encounters!
3 removed
So that's 11 in total.
"Count your blessings not your tumours" Someone said that to me... I didn't expect them to. I felt like telling them to fuck off because I'm not counting my tumours to feel sorry for myself, I'm doing to prove how strong I am.
And I am.
Do you remember the Hatfield-McCoy Feud caused by Von Hippel-Lindau
I saw something on this the other day, funny how it seems to
still be a myth.
Anyway I wanted to do a different post because I wanted to
talk about me!
I've been using Facebook forum on VHL a bit too much and I
wondered if I should, my family are connected to that and then I remembered I
could express myself here and not worry but hope - I don't know why - that some
people will read it.
I was having a drink with a friends last night and we were
talking about lots of things but VHL came up and she said she never thinks of
it when she thinks of me. I was really pleased. I hate the idea that all I am
is my genetic disorder.
I am not.
I bloody hate it all the same. I feel like a time bomb.
When will I next need surgery and when will it happen?
GRRRRRRRRRRRRR
Von Hippel Lindau is horrible.
Merry Christmas
I hope we all have a healthy 2012.
Each year, for as long as I can remember, has had some VHL related moment in it. Each time the ball drops we all hope that it will be a VHL light year, but the truth is of course that there is no such thing these days. Dad gets worse, mum and dad find life harder and harder, my sister does too.
I hide here in London and only look when I have to.
Other families have their trials and some have their tragedies. I think everyone must be quite bored of us. There must be a "oh, what now?" as they open the group email from my mum.
She used to use it to get discounts on shoes... ask me later.
"You've got to get something from this fucking disease." Shoes!
What do I get from it? Determination maybe, I got over my fear of anything new, I decided to live my life but I envy those people who didn't need a dead brother, a broken body and a genetic disease to manage it. Those people exist don't they, naturally determine people who make waves, make changes, make life for themselves and others.
Each year, for as long as I can remember, has had some VHL related moment in it. Each time the ball drops we all hope that it will be a VHL light year, but the truth is of course that there is no such thing these days. Dad gets worse, mum and dad find life harder and harder, my sister does too.
I hide here in London and only look when I have to.
Other families have their trials and some have their tragedies. I think everyone must be quite bored of us. There must be a "oh, what now?" as they open the group email from my mum.
She used to use it to get discounts on shoes... ask me later.
"You've got to get something from this fucking disease." Shoes!
What do I get from it? Determination maybe, I got over my fear of anything new, I decided to live my life but I envy those people who didn't need a dead brother, a broken body and a genetic disease to manage it. Those people exist don't they, naturally determine people who make waves, make changes, make life for themselves and others.
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.
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.
Sunday, April 08, 2012
Adoption
we are not sure yet and we really don't know if this will be the right thing to do. Just thinkingabout it at the moment.
Should we?
Should we?
Friday, April 15, 2011
Sunday, March 20, 2011
Virgin London Marathon
I was thinking of my sister running that far and the stamina it will take, the conviction and commitment to get to the end. She told me that to get her there she will be thinking of me, my dad and our brother. There are memories that will push her through; like the time they locked down the ward after I had had brain surgery because Myra Hindley was also having brain surgery.
My sister was trying to get me a bedpan and wanted to tell the press who were waiting outside the ward that I had wet the bed because they wouldn’t let anyone on or off. To do this she had to shout out 'my sister has wet the bed.'.
We often laugh about the things that happen in the days relief after surgeries, something many of us who live with VHL must do.
Where did my race start? Slowly that’s for sure - anyone who has seen me run will know that; and a slow runner doesn’t break a sweat and I didn’t. My father has had a number of surgeries ones I wasn’t alive for or too young to know about but when I was a teenager he had to have brain surgery that meant one evening I said goodbye, just in case the next time I saw him he was dead, or as my mother had warned me, brain damaged. He was fine and I jogged on further, still fine but then things started to get very difficult.
We loved my brother so much, and his death changed us all. Until his death I had experienced VHL as a novelty really, something that meant that we had tests and despite that nerve racking time when dad had surgery, there was nothing that hurt for very long. It felt like a half way point of the race, the hardest bit.
I had to decide if I was going to give up or carry on. It was one of the loneliest times of my life. It was at his funeral that I decided I had to carry on, make it to the end. My big brothers life was far too short but he never found out just how horrible VHL can be. I’m now ten years older than my big brother and I’m still going, even though I can’t see the end. He died before we all knew what a painful experience it can be. He did a sprint. The rest of us are doing a marathon.
So please give a little because the finish line should be hope and a cure which we can’t get without money!
UK donation are best through this site http://www.justgiving.com/Chloe-Doherty US ones through http://www.firstgiving.com/jorunning
My sister was trying to get me a bedpan and wanted to tell the press who were waiting outside the ward that I had wet the bed because they wouldn’t let anyone on or off. To do this she had to shout out 'my sister has wet the bed.'.
We often laugh about the things that happen in the days relief after surgeries, something many of us who live with VHL must do.
Where did my race start? Slowly that’s for sure - anyone who has seen me run will know that; and a slow runner doesn’t break a sweat and I didn’t. My father has had a number of surgeries ones I wasn’t alive for or too young to know about but when I was a teenager he had to have brain surgery that meant one evening I said goodbye, just in case the next time I saw him he was dead, or as my mother had warned me, brain damaged. He was fine and I jogged on further, still fine but then things started to get very difficult.
We loved my brother so much, and his death changed us all. Until his death I had experienced VHL as a novelty really, something that meant that we had tests and despite that nerve racking time when dad had surgery, there was nothing that hurt for very long. It felt like a half way point of the race, the hardest bit.
I had to decide if I was going to give up or carry on. It was one of the loneliest times of my life. It was at his funeral that I decided I had to carry on, make it to the end. My big brothers life was far too short but he never found out just how horrible VHL can be. I’m now ten years older than my big brother and I’m still going, even though I can’t see the end. He died before we all knew what a painful experience it can be. He did a sprint. The rest of us are doing a marathon.
So please give a little because the finish line should be hope and a cure which we can’t get without money!
UK donation are best through this site http://www.justgiving.com/Chloe-Doherty US ones through http://www.firstgiving.com/jorunning
Friday, February 25, 2011
A note from my sister
This is what my big sister wrote "I am not what you would call a natural runner or even an enthusiastic one at that, but after experiencing a crazy moment have enrolled myself to run the London Marathon on 17th April 2011 with all monies raised through my kind sponsors going to VHL charity. Although I myself do not have the gene both my dad and younger sister have (as did my younger brother who very sadly passed away nearly 15 years ago aged 22) so have experienced first hand the physical, emotional & psychological effects it has on those who have the condition and those who love them but don't.
Even though I feel like I have lived my whole life with the presence of VHL, I still feel I do not fully understand the condition and the implications it has for my family - after every check-up or series of tests it seems something new has been found or appeared. You come across very few people who have actually heard of the condition let alone know what it means for someone suffering with it - whilst training for this marathon I have re-trained and qualified as a Emergency Medical Technician and even talking to paramedics/nurses etc who have worked for years in this field are stumped when I talk about VHL!
Nothing I can do can take away my dad and sisters pain/frustrations/worries nor those of my mum/brother in law to be/children/grandchildren or myself but I am hoping that when I cross that finish line on 17th April after 26.2 miles the money I will have raised as well as the awareness of VHL will go some way to funding more research into this devastating condition"
Even though I feel like I have lived my whole life with the presence of VHL, I still feel I do not fully understand the condition and the implications it has for my family - after every check-up or series of tests it seems something new has been found or appeared. You come across very few people who have actually heard of the condition let alone know what it means for someone suffering with it - whilst training for this marathon I have re-trained and qualified as a Emergency Medical Technician and even talking to paramedics/nurses etc who have worked for years in this field are stumped when I talk about VHL!
Nothing I can do can take away my dad and sisters pain/frustrations/worries nor those of my mum/brother in law to be/children/grandchildren or myself but I am hoping that when I cross that finish line on 17th April after 26.2 miles the money I will have raised as well as the awareness of VHL will go some way to funding more research into this devastating condition"
Sunday, January 09, 2011
Happy New Year
I'm no nearer to a solution for the hole in my macular, one more specialist to see but so far it's has been a resounding - "probably better to leave well enough alone" and I don't mind, I'm getting used to not having that bit of site. Now I ask my husband to be
"Is that armpit clear?" and I'm thinking of training up regarding putting on eye make-up. If only I weren't so vain hey.
The brain has got a little something there that shouldn't be but so have 8 other parts of my body and right now I'm just letting it all be.
Down on my meds too. only need 5 and 5 now.
so dull really, for one with VHL things are plodding along and thank god for that because I'm getting married this year and frankly I could do without the hassle
"Is that armpit clear?" and I'm thinking of training up regarding putting on eye make-up. If only I weren't so vain hey.
The brain has got a little something there that shouldn't be but so have 8 other parts of my body and right now I'm just letting it all be.
Down on my meds too. only need 5 and 5 now.
so dull really, for one with VHL things are plodding along and thank god for that because I'm getting married this year and frankly I could do without the hassle
Sunday, November 28, 2010
Thursday, October 14, 2010
Angioma and macular holes
I saw a second specialist today who said that I have PVT and that the tumour is sticking to the retina and so surgery would be extremely risky because even the slightest nick would result in a haemorrhage.
I only saw the specialist for a few minutes and after I recovered from hearing news I didn’t really want to hear I now have lots of questions and no one to ask so on the off chance you can help I’m asking this help group.
Q. If a macular hole remains untreated can you eventually loose all of your vision or does it only reach a certain level?
Q. Is it dangerous to leave a macular hole untreated?
Q. Is the only way to stop a haemorrhage to corterise the site?
Q. If there is a large haemorrhage in an eye is it visible from the outside?
update on this -
Only reaches a certain level
nope - well I have to be aware of retinal detachment
Kind of but haemorrhages are not such a big deal, the blood is reabsorbed.
no, well not little ones
I only saw the specialist for a few minutes and after I recovered from hearing news I didn’t really want to hear I now have lots of questions and no one to ask so on the off chance you can help I’m asking this help group.
Q. If a macular hole remains untreated can you eventually loose all of your vision or does it only reach a certain level?
Q. Is it dangerous to leave a macular hole untreated?
Q. Is the only way to stop a haemorrhage to corterise the site?
Q. If there is a large haemorrhage in an eye is it visible from the outside?
update on this -
Only reaches a certain level
nope - well I have to be aware of retinal detachment
Kind of but haemorrhages are not such a big deal, the blood is reabsorbed.
no, well not little ones
Sunday, August 22, 2010
Being normal
I've spent a week with my dad and his disabilities. We do all take so much for granted, such a cliché now but when I think of what used to be possible I realise how much he is missing. But my daughter doesn't know any different and as a result it seems to me that they have the best relationship out of all of us. She doesn't have any false expectation of him, she's only ever know who he is now and she loves him completely.
They get on, both as daft as each other. He winds her up; she winds him up. They play together and he is a proper granddad who does granddad type things.
So I miss parts of him that he misses but at least they are both enjoying their time together.
They get on, both as daft as each other. He winds her up; she winds him up. They play together and he is a proper granddad who does granddad type things.
So I miss parts of him that he misses but at least they are both enjoying their time together.
Monday, August 09, 2010
Thursday, June 10, 2010
My baby
My wonderful VHL free little one.It is a good thing to be able to say, it is almost unbelievable
Monday, May 10, 2010
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