I'd put off seeing the genetic specialist who'd already seen my sisters. I just couldn't face another appointment, got sucked into other things, kept telling myself it'd be ok.
But my thoughts have been turning to another IVF round and I thought I better find out what exactly the score was with being a donor, recieving eggs, embryo testing and so on.
A lot of what I'd been considering was - and I realise this is going to sound stupid - based on what my parents told me. That although my sisters and I were at risk of carrying HD, it'd only manifest itself in our late 70s, and take another 20 years to kill us. And that, if we were carriers, and our children also inherited the gene, they would get it at the same age we did.
Except, that turns out to be only half right. While my Dad has a mild form of HD, HD is more likely to become stronger if you inherit it from your father than your mother. So if one of us does carry it, it could appear in our 40s.
Which obviously means doing an egg share is a complete non starter.
Things then got a bit frustrating with the genetics man, who I think already thought I was weird; admittedly, years of infertility does change your boundaries when it comes to fertility treatment.
I asked if we could get pre-implantation genetic diagnosis (ie, the embryos get scanned for HD before being transferred).
He said we couldn't in the UK as we already had a child. He said we couldn't. I thought he meant on the NHS, as it is very rare for health boards here to fund someone who already had a child.
I thought this was kind of bizarre, and so asked if we could get PGD privately. He said no, "they" thought it would be unfair if one child had been cleared but not the other.
I then asked about getting it abroad. The guy looked a bit weirded out and waved his arms, saying it would be very expensive and difficult to get (which, frankly, seemed a bit odd; I've read enough about IVF to realise that some countries have very liberal laws about donations and screening).
I can do a test that, if I don't have HD, would clear me to go down the original egg sharing route.
If I do have HD I can find out, practically to the year, when it will onset. Which means I'll roughly find out when I will die, too.
I'm not really sure what to do. In some ways, if I was going to have it at 40, then I'd rather know now so I could get around to writing my novel, stop spending on a pension and try to enjoy life more. I could practically advance book my ticket to Switzerland to be euthanised (if I do have it, I'm fucked if I'm hanging around until the bitter end, choking on cranberry juice in a home somewhere, smelling of wee).
But then, I'm not sure how I'd cope with having the certainty of HD. Depending on how strong the gene is, it becomes problematic to buy a house as nobody wants to lend money to someone who isn't going to be around in 25 years.
Perhaps most importantly, if I get the test and know, then the Boy will know he has a 50:50 chance. At the moment he has a 25% chance of having HD, and I feel those odds are more comforting.
Having thought about it and done some light research, it appears that the genetics man wasn't entirely familiar with IVF abroad; I've found clinics where IVF with PGD can be done for less than a regular cycle here.
I think I'm inclined to want to do a PGD cycle abroad, which would eliminate HD, although I don't think I'd want to know if I was a carrier.
I think my husband thinks it would make sense for me to get tested before we do that, which could bring the egg sharing option back into play.
I might need to try and get some expert advice from somewhere - I think the genetics people probably aren't too familiar with IVF, but my normal sources of infertility information don't have much on genetics.
Monday, 23 June 2014
Sunday, 1 June 2014
Misogyny
I was doing some voluntary work in my hometown. Pausing outside one of the doors in the very ordinary road I was on, I heard shouting:
"I want to rip your arse!"
"I want to sniff your fanny!"
"I want to fuck your cunt!"
And so, a group of lads, in their 20s, came towards me. I took a step back and started studying my clipboard.
One came up to me and said:
"Awright! Do you want to come with us?" and gestured further along the road, bottle in hand.
I don't know if the normal chat up tactics there revolve around having your mates hurl abuse and then think you'll be - what? have your self esteem so destroyed you'll shag anything? - enamoured enough to swap bodily fluids with them.
I declined, to much laughter from the guy's mates.
I called the police, and suggested they might want to send a squad car around to check on the party of 8 loud, drunk men wandering aroun a small, quiet town. They called me back later, and weren't terribly interested. It is my right to give a statement, but they're not going to follow it up, realistically.
I've been angry about misogyny this week. Elsewhere in the world, a pregnant woman has been stoned to death in an 'honor' killing, another woman has been sentenced to death on trumped up charges for denying a religion she was not brought up in (hopefully she will be freed). Two teenagers have been gang raped and hung in India; after the police refused to investigate, people from the girls' village refused to let the bodies be cut down until suspects had been arrested.
And let's not forget the missing girls in Nigeria. Whatever they're going through now, it is unlikely to be pleasant.
And that's just the ones we know about. All over the world, countless women and girls have been abused, raped and tortured this week. Just for being female.
Me being shouted at is in no way the same as some of the horrendous abuses perpetuated against women elsewhere in the world. But the motivation of a small subsection of inadequate, small dicked, badly educated, easily threatened men is the same the world over. Men whose hate is ignored by a disinterested state, or who actually, terrifyingly, are in charge.
I don't hate men. I am, after all, happily married to one an the mother of a very small one. But there's just no excuse for the men who hate women, however that hatred manifests itself.
"I want to rip your arse!"
"I want to sniff your fanny!"
"I want to fuck your cunt!"
And so, a group of lads, in their 20s, came towards me. I took a step back and started studying my clipboard.
One came up to me and said:
"Awright! Do you want to come with us?" and gestured further along the road, bottle in hand.
I don't know if the normal chat up tactics there revolve around having your mates hurl abuse and then think you'll be - what? have your self esteem so destroyed you'll shag anything? - enamoured enough to swap bodily fluids with them.
I declined, to much laughter from the guy's mates.
I called the police, and suggested they might want to send a squad car around to check on the party of 8 loud, drunk men wandering aroun a small, quiet town. They called me back later, and weren't terribly interested. It is my right to give a statement, but they're not going to follow it up, realistically.
I've been angry about misogyny this week. Elsewhere in the world, a pregnant woman has been stoned to death in an 'honor' killing, another woman has been sentenced to death on trumped up charges for denying a religion she was not brought up in (hopefully she will be freed). Two teenagers have been gang raped and hung in India; after the police refused to investigate, people from the girls' village refused to let the bodies be cut down until suspects had been arrested.
And let's not forget the missing girls in Nigeria. Whatever they're going through now, it is unlikely to be pleasant.
And that's just the ones we know about. All over the world, countless women and girls have been abused, raped and tortured this week. Just for being female.
Me being shouted at is in no way the same as some of the horrendous abuses perpetuated against women elsewhere in the world. But the motivation of a small subsection of inadequate, small dicked, badly educated, easily threatened men is the same the world over. Men whose hate is ignored by a disinterested state, or who actually, terrifyingly, are in charge.
I don't hate men. I am, after all, happily married to one an the mother of a very small one. But there's just no excuse for the men who hate women, however that hatred manifests itself.
Monday, 26 May 2014
Update
I've been badly neglecting my blog, sorry about that.
Things that have been happening are:
The cat has gone outside! Tonight, for the first time ever. I looked through the kitchen window and realised she was in the garden. She back around and in looking like she was expecting a row, so I fed her cat treats outside. She's not very keen on standing on grass, just like she wasn't very keen on standing on anything that wasn't carpeted before we moved. It's a start.
The Boy is well and we are about to start potty training, and move him into a bed that he can escape from (although I'm not sure if I'm ready for either). He can recognise his numbers but won't say four, five or six for some reason.
The garden is coming along well. When we've got actual flowers and stuff I'll post photos, but we have peas, sweetcorn, potatoes, sunflowers and nasturtiums.
Other than that, we're more or less ticking along ok.
It is not a very exciting blog update, but then, I'm quietly enjoying having an uneventful time at the moment!
Things that have been happening are:
The cat has gone outside! Tonight, for the first time ever. I looked through the kitchen window and realised she was in the garden. She back around and in looking like she was expecting a row, so I fed her cat treats outside. She's not very keen on standing on grass, just like she wasn't very keen on standing on anything that wasn't carpeted before we moved. It's a start.
The Boy is well and we are about to start potty training, and move him into a bed that he can escape from (although I'm not sure if I'm ready for either). He can recognise his numbers but won't say four, five or six for some reason.
The garden is coming along well. When we've got actual flowers and stuff I'll post photos, but we have peas, sweetcorn, potatoes, sunflowers and nasturtiums.
Other than that, we're more or less ticking along ok.
It is not a very exciting blog update, but then, I'm quietly enjoying having an uneventful time at the moment!
Tuesday, 22 April 2014
Gone fishing
Spring is here, and much has been happening...
The garden is going well - some potatoes have surfaced, the peas are growing, and we hopefully have some seedlings in the herb garden. Either that or they are weeds. Better still, a thrush has appeared a few times, and we have had bumble bees visit too. I will post photos of the plants soon, although it's not a lot to look at as the garden was covered in either gravel or grass when we moved in. But it's less barren than it was.
The Boy had his first camping trip. He enjoyed it until evening time, when he kept trying to put his coat on and get in the car. He was also clearly having withdrawal symptons from electronic equipment. His favourite part of the trip was finding a book with numbers in a bookshop, along with feeding the ducks.
I am monumentally busy, partly with work, partly with the Boy, and partly with that thing that's happening here later on in the year, which you may have read about and which I will not mention by name on here, but will blog about shortly.
The cat is getting a bit grumpy. When we came home from camping, she'd clawed loads of the carpet off the stairs; she's never done anything like this before. When we sat outside in the garden, she stood inside and scolded us, and refused to join in. She didn't sleep with us either. She seems back to normal now, but she's definitely getting more set in her ways.
I went to see my parents at the weekend. They are on their best behaviour. For now.
All in all, it's not been a bad spring.
The garden is going well - some potatoes have surfaced, the peas are growing, and we hopefully have some seedlings in the herb garden. Either that or they are weeds. Better still, a thrush has appeared a few times, and we have had bumble bees visit too. I will post photos of the plants soon, although it's not a lot to look at as the garden was covered in either gravel or grass when we moved in. But it's less barren than it was.
The Boy had his first camping trip. He enjoyed it until evening time, when he kept trying to put his coat on and get in the car. He was also clearly having withdrawal symptons from electronic equipment. His favourite part of the trip was finding a book with numbers in a bookshop, along with feeding the ducks.
I am monumentally busy, partly with work, partly with the Boy, and partly with that thing that's happening here later on in the year, which you may have read about and which I will not mention by name on here, but will blog about shortly.
The cat is getting a bit grumpy. When we came home from camping, she'd clawed loads of the carpet off the stairs; she's never done anything like this before. When we sat outside in the garden, she stood inside and scolded us, and refused to join in. She didn't sleep with us either. She seems back to normal now, but she's definitely getting more set in her ways.
I went to see my parents at the weekend. They are on their best behaviour. For now.
All in all, it's not been a bad spring.
Thursday, 27 March 2014
An update
Not a terribly exciting one, but I've been neglecting my blog...
Our family Huntingdon's (other families have land and titles, and possibly a line of pedigree Labradors, we have a disease...) turns out to get stronger through the male line. So my sisters and I are unlikely to get it until late on in life. If I have HD, and the Boy also has it, then his children may get earlier onset HD.
All this is second hand, as I've been frenetically busy with work - or possibly doing displacement activity, however you view it - that I haven't had time to speak to a counsellor myself. Our mortgage is sorted, but I'm actually at the point that I'd rather not know too much.
My relationship with my parents is almost non existent. We met up with them briefly so they could look after the Boy for a while, which was mostly because I thought it might be good all around if I didn't cut things off between him and them.
That went ok, but then a few days later Mum texted us to invite us down for dinner, then phoned up both me and my sister because, independently from each other and for very good reasons, we hadn't replied within about 8 hours. I tried to speak to her but she just wanted to whinge about everything - how ill my father is, how the NHS aren't doing enough - which I thought was a bit rich given their recent adventures abroad.
("The holiday was the only thing keeping your father going"; I get that not being able to do long haul trips is a bit confining, and my parents have spent a lot of time in this destination, but really, I am heartily fed up of my Mum making our the world has ended, particularly after the book/HD diagnosis).
The conversation ended badly, and then she sent an e-mail to all her children trying to justify telling us we might have HD and then immediately pissing off on holiday, not giving us any more information, and blaming it all on her consultant.
On happier note, we are at a crucial point in gardening. Having sprouted things inside, we have moved them outside - potatoes and peas. The sweetcorn I'm trying to sprout isn't doing too well, and I think I may have killed some sunflowers by forgetting to water them, but hopefully we'll have things working soon.
Our family Huntingdon's (other families have land and titles, and possibly a line of pedigree Labradors, we have a disease...) turns out to get stronger through the male line. So my sisters and I are unlikely to get it until late on in life. If I have HD, and the Boy also has it, then his children may get earlier onset HD.
All this is second hand, as I've been frenetically busy with work - or possibly doing displacement activity, however you view it - that I haven't had time to speak to a counsellor myself. Our mortgage is sorted, but I'm actually at the point that I'd rather not know too much.
My relationship with my parents is almost non existent. We met up with them briefly so they could look after the Boy for a while, which was mostly because I thought it might be good all around if I didn't cut things off between him and them.
That went ok, but then a few days later Mum texted us to invite us down for dinner, then phoned up both me and my sister because, independently from each other and for very good reasons, we hadn't replied within about 8 hours. I tried to speak to her but she just wanted to whinge about everything - how ill my father is, how the NHS aren't doing enough - which I thought was a bit rich given their recent adventures abroad.
("The holiday was the only thing keeping your father going"; I get that not being able to do long haul trips is a bit confining, and my parents have spent a lot of time in this destination, but really, I am heartily fed up of my Mum making our the world has ended, particularly after the book/HD diagnosis).
The conversation ended badly, and then she sent an e-mail to all her children trying to justify telling us we might have HD and then immediately pissing off on holiday, not giving us any more information, and blaming it all on her consultant.
On happier note, we are at a crucial point in gardening. Having sprouted things inside, we have moved them outside - potatoes and peas. The sweetcorn I'm trying to sprout isn't doing too well, and I think I may have killed some sunflowers by forgetting to water them, but hopefully we'll have things working soon.
Thursday, 13 March 2014
Gardening Rules
Do not eat the compost
Do not eat the seeds, it is ok to eat them when they are corn, but not now
It is ok to move the pots of newly planted seeds, but not upend them
Do put the seed potatoes into the planting box nicely
Do not ram the seed potatoes into the planting box as hard as you can
Do not eat the compost
Do not eat the peat planters
Do not eat the seed potatoes
It is good to put the seeds in the earth in the peat planters and then poke earth over them gently
Do not eat the filled peat planters; they are not burritos
Do not eat the compost FOR THE LAST TIME
Playing on the slide during planting is actively encouraged
The cat does not want seed potatoes, ungrateful beast
Do not suddenly learn how to open the garden gate and run into the road while my back is briefly turned
Watering the plants is good, but NAPPIES MUST STAY ON
He still managed a mouthful of compost. Eugh.
Do not eat the seeds, it is ok to eat them when they are corn, but not now
It is ok to move the pots of newly planted seeds, but not upend them
Do put the seed potatoes into the planting box nicely
Do not ram the seed potatoes into the planting box as hard as you can
Do not eat the compost
Do not eat the peat planters
Do not eat the seed potatoes
It is good to put the seeds in the earth in the peat planters and then poke earth over them gently
Do not eat the filled peat planters; they are not burritos
Do not eat the compost FOR THE LAST TIME
Playing on the slide during planting is actively encouraged
The cat does not want seed potatoes, ungrateful beast
Do not suddenly learn how to open the garden gate and run into the road while my back is briefly turned
Watering the plants is good, but NAPPIES MUST STAY ON
He still managed a mouthful of compost. Eugh.
Thursday, 6 March 2014
The calm after the storm
I picked up my parents from the airport last week. Mum was clearly still in the huff about her book and made a couple of snitty comments, despite the fact I'd given up a fair amount of time to do the pickup run.
I am glad I did though as my father looked awful - he'd been sick on both planes and I had to gently take charge of the luggage trolley as he couldn't manage to steer.
They dropped me off, I gave them a ready cooked dinner, then everything was virtually silent for a few days.
Then me and my sisters all got a somewhat cryptic text saying my dad was getting a home visit from a doctor (bear in mind that this is extremely unusual here).
This time it wasn't me that snapped, it was my oldest sister, who went a bit overboard, but called up to give them a bollocking about announcing there was a genetic disease in the family then flying off on holiday and not giving any further explanation.
What appears to have happened is that my parents told the consultant they knew what Huntingdon's was but actually didn't. They assumed it only affected old people and, although they realised fifty percent of people inherit the gene, thought it was its rare to develop symptoms.
My understanding is that the fifty percent who carry the gene on from a parent will develop the disease at some point, but the big uncertainty is when it appears - if you get it late in life its likely something else will kill you first, but if you are unfortunate to get an early onset case then it is deeply unpleasant.
Mum and dad were told they'd be referred for counselling and i think were meant to go to a session before deciding to tell us, but were so preoccupied with going on holiday they called everyone before they'd left the hospital.
I think they understand now - my mother was initially grasp why it wasn't simply a case of everyone supporting her and I think was horrified when she realised she'd made a mistake.
But the last time i spoke to her she was still moaning about not being able to go on long haul holidays with my father again, and my patience is wearing very thin. She hadn't managed to look at the NHS information on Huntingdon's and still seemed woefully ignorant about the condition.
Anyway, the actual appointment turned out to be with a genetic counsellor rather than a doctor, who we are all seeing separately. Hopefully I'll get some answers soon.
I am glad I did though as my father looked awful - he'd been sick on both planes and I had to gently take charge of the luggage trolley as he couldn't manage to steer.
They dropped me off, I gave them a ready cooked dinner, then everything was virtually silent for a few days.
Then me and my sisters all got a somewhat cryptic text saying my dad was getting a home visit from a doctor (bear in mind that this is extremely unusual here).
This time it wasn't me that snapped, it was my oldest sister, who went a bit overboard, but called up to give them a bollocking about announcing there was a genetic disease in the family then flying off on holiday and not giving any further explanation.
What appears to have happened is that my parents told the consultant they knew what Huntingdon's was but actually didn't. They assumed it only affected old people and, although they realised fifty percent of people inherit the gene, thought it was its rare to develop symptoms.
My understanding is that the fifty percent who carry the gene on from a parent will develop the disease at some point, but the big uncertainty is when it appears - if you get it late in life its likely something else will kill you first, but if you are unfortunate to get an early onset case then it is deeply unpleasant.
Mum and dad were told they'd be referred for counselling and i think were meant to go to a session before deciding to tell us, but were so preoccupied with going on holiday they called everyone before they'd left the hospital.
I think they understand now - my mother was initially grasp why it wasn't simply a case of everyone supporting her and I think was horrified when she realised she'd made a mistake.
But the last time i spoke to her she was still moaning about not being able to go on long haul holidays with my father again, and my patience is wearing very thin. She hadn't managed to look at the NHS information on Huntingdon's and still seemed woefully ignorant about the condition.
Anyway, the actual appointment turned out to be with a genetic counsellor rather than a doctor, who we are all seeing separately. Hopefully I'll get some answers soon.
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