support thread for women who have chosen to terminate

[busierbee]

Hello
Busier Bee here - I felt that before I went to bed I wanted to open up officially a new place for weary travellers of those on the road that we have chosen to rest our heads, muse, sob, moan and support each other.
Also the kind, compassionate souls who have not been there but who offer their support and lend an ear and pass a gentle word.
We have chosen to be here and we are here and we are not alone.
Thank you so much all of you -for I personally do not know where I would have been in the last few weeks without you all.
Night - sleep well
kisses and thoughts
BB xx

Hi Justa

I'm sure you've heard of a thousand remedies, i get morning sickness that feels like travel sickness, anyway, I found the thing that helped me most (bizarrely) were sherbet lemons!

Hope you feel better soon xxxxx

oooh sherbet lemons. Yum. Now they must be dairy free

Glad to hear from ya holy lady. Was a bit, not concerned, but wondering how you were. You know. Saw you around though so figured you were ok-ish.

Nausea sucks, sort of think sickness is better!

Okay guys - am back!!! Have missed you all horribly but laptop been sick and poorly and taken to Laptop Medicine Unit (LM's work) for three days!! Have been somewhat freaked out by my inability to reach out and spill my feelings to you all. Still not mended - have virus in email account - hate it.
So Bezzy and Marj - folic acid. I read Shangrila's article and some other stuff on web and went to see doc straightaway. I am suddenly a woman on a mission. Bezzy - my same dates friend - we too will try in the summer after three months of FA - but the dose is 5mg and i got it from the chemist with prescription.
Am all in a tither though and felt head positively squeezed with tension and confusion.
Ie; do I take the folic overdoses and try naturally or attempt PGD? Is very accessible in London.. but IVF brings its own issues, risks, pains.
I feel like I did after the first baby when I had to find out all about DS and termination and what about keeping the baby etc and there was NO ONE to turn to.
So now I am so confused and because no one knows what causes DS there is not a clear avenue to follow.
So ended in tears last night with LM telling me we need some time and me feeling time is the last thing we have as am old old old.
So.. he also convinced is something genetic and we will find this out at genetic meeting on 15th June.
Lindso - this all sounds very very positive for you my dear and well done for getting to that appointment with falling into pieces.. I cycled around Springfield Park on Sunday - love it.
Tree - poorly hubbie? Yikes hard to look after illy man and wee girlie - bet you tired out.
Justa - I wish you all the luck in the world for Monday - but is sounding v good if you sick and tired and craving lemon drops.
JJF - still sending you all the support and hand holding that you need at the moment and it must be a lot really.
Bezzy _ i can not do ARC at the moment - find all the scrolling up and down bit tricky and prefer the immediacy and history I have here. Also well done to you for getting somewhere with hubbie - have you had your night out yet?
SAMR1 - glad you sounding bit brighter and hoping to hear jolly news some time soon.
Night all as very late now and tired
xxxx

Hurrah for BB BB [Busier Bee Being Back]. Not so hurrah for stress levels. Sleep tight but try to have a few moments relaxation before crashing, might stave off the disturbed nights you can have. xxx

Oh God! Did not say hello to lovely Lins but this is because have chatted to you on phone and texted you so feel connected in spite of laptop crash.Hope poor itchy girl not suffering too much
Sending love and hugs anyway
xxxxxxxxxxxxxxxxxxxx

welcome back BB! we missed you! Not sure how I would cope if laptop became unwell, would need to spend all day in an internet cafe I suspect.

Am now thinking about the folic acid thing....wonder if it's worth seeing dr to get the mega dosage, or whether they'll just tell me to go away as we 'only' had the one down's pregnancy. Have been putting off seeing dr about this kind of thing, as know I'll end up wailing, which I'm not keen to do in front of DD. Good luck with the PGD decision BB, must be tough.

As for night out, my lovely neighbour, whom I've recently become friendly with, is INSISTING on babysitting for us one night next week, so looks like we'll have that night out after all. She's one of those people, pretty, tall, skinny, clever and NICE - argh!

I went spinning this morning >>gasps fill the room

Gosh Bezzy - spinning?!i feel as if am spinning most of time - even when sitting on my chair. Must be something in the recovery though as I went for a swim this week and I NEVER do exercise.
Re Folic Acid - do not think matters at all that you have had one only DS pregnancy.Most women do only have one but God forbid should happen to you again darling, so in my opinion go to docs and get some... can do you no harm and they give it to all sorts of folk - diabetics, epilectics etc.
Re going out with hubbie - so glad you are going to - is very important - just do not let him 'walk' babysitter home!
BBEEEE

BB / Bezzy,

B - great to have you back. Bloody inconsiderate of your laptop to break like that!! I asked my consultant about higher dose FA as I'd mentioned earlier in the thread. Her response is below:-

"Folic acid is advised in order to reduce the risk primarily of Spina Bifida and anencephaly which are severe abnormalities of the spine and brain. The dose that all women are advised to take is 400 micrograms. For those deemed to have an increased risk of these particular problems, perhaps because it has happened before or there is a strong family history, then the recommended dose is the higher dose of 5 milligrams. There is less evidence that folic acid helps to prevent other abnormalities such as congenital heart defect. It is not known to prevent chromosomal defects such as those we are looking for at nuchal thickness screens and I don't think it could affect a nuchal thickness result. It is probably a coincidence that your friend had a better nuchal reading on the higher dose. If you want to take the higher dose it won't do any harm"

M

Fair enough but did he know already about the research that Shangrilla sent us?
How depressing if it is all poppycock - really feel need to hold onto something.
Marj - cannot remember if you have had one or two terminations for DS?
I am so desperate for all of us to have the biggest chance of conceiving healthy child - do you think you will take it?
May you consider PGD do you think or not?
Exhausting and teenager has just stropped off to bedroom re revision.

I would be a little bit careful about upping the dose of folic acid above that recommended, because although there is bugger all evidence either way to date the latest 'hot theory' for the development of autism is that it is in some way linked to increased intakes of folic acid.

Thanks Saintlydamemrsturnip, I've had a think and have decided that I'm just going to stick with the recommended dosage, at least until I'm told otherwise.

B x

bezzyk - hurrah and all power to you for making a choice you are comfortable with re:folic acid, and for spinning class. My dh cycles and goes to spinning, he is hyper fit though and finds it 'fine'. I break a sweat just lisening to instructor scream at them all to pedal!

marj1 - thanks for the info your consultant gave.

Justa - how are the sherbet lemons and Phd going? Just 2 more sleeps to go.

Bee - how you doing? Are you finding this bit hard, tiring, ok? Am not sure from your posts and, as always, interested in how it is for you in rl. I guess you have a time of planning and decision making coming up. Its hard. Big huggs and powerful vibes filled with energy.

SaintlyMrsTurnip - thanks for that re: the autism link.

OK here, bit zonked here as insomnia struck last night [when bubba asleep typical] so I must be coming out of the early postnatal months and geting back to old doo lala laly self. Period too. Sucks.

Thursday for egg donation appt. Will be a mahoosive day, 4 hours on trains for a start, and a 14 hour day. So many questions. Plus internal scans. Yak. Be worth it though if it works.

Bottle of wine and Eurovision, Saturday nights don't get much better!

Enjoy everyone xx

What no mn????

Enjoy!

Bee - forgot to answer your other question about PGD. Wouldn't be an option for us as they have said definately not genetic, just a bad egg!

Had a manic day, up at 8am (which is a miracle for me on a Saturday), shopping at 9.30am and cleaning the whole of my downstairs. Will tackle upstairs tomorrow. We're off to Turkey on Thursday (can't wait) so the house has to be spotless before we go otherwise my stress levels go into overdrive. DH says it's a woman thing! Think he's right x

HI marj
Just cannot bring self to watch it!
So... the geneticist will undoubtedly say same thing for me too - as DS is not known to be genetic unless it is the 1percent type that is ... translocation which we do not have.
I think though since we have had two pregnancies there is a feeling - and my consultant agrees - that it may be genetic in some cases and they just have not identified the gene yet.
So - since also am nearly 42 we may try this option. How I feel is overwhelmed by the lack of information, confused, anxious and stuck in a not knowing which way to turn situation.
We could try again naturally and then do PGD but not sure how much longer I can go on with the uncertainty and confusion to be honest.
Are you taking normal levels FA?
Am now even more confused re the autism thing

I think the hard thing here is BB, that no one knows. We can look, and search and ask, but no one knows. It sucks.

The only one who really has any idea what is best for you to do next is you and LM. I really believe that. But I think it will take time and work before the knowledge is available to you. If the dust can settle and your brains can get into their flow, then you might be able to tap into what it is you shold do. What it is you feel is best for you.

Right now you must feel like you are on a merry go round not knowing when to hop off.

Hi Bee,

I'm just taking the normal FA dose at the mo and think I'll just continue on them.

We are definately going to try again but for me it's the "sex" thing. I find it such a chore, enjoy it when it's happening but would much prefer a cup of tea in front of the Apprentice. Must try harder I think

x

Hello all

Just checking in after a tired and unexpectedly emotional week.

I've found that in the absence of any thing else more 'real' to hold onto, the upper dose of folic acid means that I'm able to do something, anything, rather than just stumble on and 'try again' blindly. Fat lot of good that advice did me last time! My GP isn't convinced - far from it. But he knows me well enough to know that it is better that I live in the knowledge that I might be doing something positive rather than just meekly accepting whatever might come my way.

BB did you have a geneticist meeting last time? I found it quite weird to see my chromosomal printout in front of me. Both DH and have a normal karyotype (spelling? - it's late). I'm inclined to believe that I have gonadal T21 ie my eggs are compromised prior to fertilisation. More unlikely in your case, having had a successful run of pregnancies in the past. The massively frustrating thing in all this is, it's all unknown - or rather unknowable. We just have to do the best we can on the patchy information we can glean and than take a massive leap of faith when we are ready.

My best to all of you. My DH is out at work , so I'm off for a nice long soak in the bath and a big glass of wine. Catch up with you all later on in the week - with good news, I hope!

Shangrilla
Any chance of CAT ing each other?
Would really love to talk with you as am driving self mad with it really. Feel so trapped and panicked and the not knowing what the hell is causing all this heartache is too much to bare.
No problem if not - i do understand
is very private thing
BB xxxxxxxxxx

Just popping on briefly- haven't been online since Weds and there's so much to catch up on.

BB and Shangrila I really feel for you. It is so incredibly hard to make decisions and move forward amid so much uncertainty. It seems to be that often one has to make peace with such uncertainty and the enormity of the implications before you can start to move on, and doing anything that could offer more hope, such as the folic acid, can be a very useful "crutch" if that's the right word for giving you the confidence to try again. I really hope BB that your genetic counsellor can help you through this minefield a little. Ours was unfortunately not all that helpful- basically told us what we already knew but didn't really want to "counsel", but it's hard over here because of the issues with terminations etc.
It took us over a year before we felt ready to "roll the dice" again, and emotionally strong enough to do that considering all it entails. But saying all that you are never really ready. I am still pretty much as terrified and confused as I was 1.2yrs ago. But now DH & I have a "plan" that we agreed together and somehow I know we will stick to it, because it's there. Sorry I am waffling a lot and not sure it's making much sense! Just try to be gentle on yourselves- there are so many things we cannot be in full control of, or have knowledge of, and we have to find away to hold together and keep going.

Lindso so pleased you had a good scan, will keep everything crossed the bloods help you decide easily whether or not to have a CVS and there is no "grey area".

Justaboutspringtime will be thinking of you tomorrow. Thank you for your email will get back to you shortly!

Well my waiting time is being shortened a bit. The consultant who scanned me (again, much to my surprise) on Thursday found us to be at 11 weeks (by size & development) rather than 10, and decided to move the CVS date forward. The CVS consultant then popped down and decided we'd try it tomorrow . There is a slim chance my bowel will not have yet moved aside which will prevent access to the placenta but he thinks it's worth a go. And then 5 working days afterwards (so possibly next Tuesday) we will get the genetics results. I am in a way hugely relieved the wait is less but now terrified. Finding sleep hard, so much swimming in my head. I am dreaming of needles, babies, and the worst of CF too. My unconscious and conscious are definitely tormented. It's been quite tough this weekend as DH's parents are staying with us and we haven't told them anything- I just long now to be out of this situation but am also desperately worried as to how I will ever cope if the worst comes to pass. But I will be glad when this secret time is over, I feel like I am pulling the wool over so many good friends and family's eyes but know I couldn't cope with dealing with their opinions right now...

Anyhow while MIL is babysitting I have been sent into uni to work on the PhD which is the last thing I feel like, but the peace is welcome admittedly. I really hope you are all ok and thank you for your support, it means so much xxx

Hello Bezzy and Tree, (and all the tumble weed rolling across this quiet thread!)
Just logged on briefly at my mum's house, as our compouter still disconnected, (and Bee's computer has a virus, eekk!).
My poor Dd has had such a rough few days with the chickenpox. She's COVERED and very miserable. And at two and a half, not really old enough to know that a few minutes slight dicomfort putting cream on spots will help them feel better (screaming, 'no cream mummy, NOOOOOOOO!!) Friday night she only slept between one am and 3am. Bathing her at 3.30 was a bit surreal. SNORE......

Bezzy, I hope that a summer of pimms will be relaxing and put you in a positive chilled mood for making a little bean. Glad you have decided on a plan of action!

Justa, huge good luck for tomorrow. xxxxxx Can't believe you have brain left to study..being preg wears me out.