A Survivor's Guide to Huntington's Disease?

DS

2011-11-21T16:01:00.000Z

Our little man shortly after he was born. So very gorgeous.

Updates and random thoughts...

2011-11-04T16:42:00.003Z

So everything's going well. DS is going from strength to strength, putting on weight and changing all the time. He's absolutely gorgeous, and melts everyone's hearts. Mr F is pretty much back at work (rubbish!) but we've had lots of help from relatives, which has been lovely. Next week might be a little bit of a test as everyone will have gone home but I'm sure we'll be fine.

We've met our health visitor, who seems really nice and was completely taken with DS. He made a typical fertile person comment - "I know lots of people who had IVF, but they all got pregnant with their second child straight away, no problems..." in a you just need to relax kind of way. Really pleased for them but not really relevant or useful to us or probably most people.

Thoughts of our struggles to get pregnant seem to be fast fading into the background. Almost like it wasn't us who went through that. I don't mean that I am ever going to forget what we went through, but it doesn't really matter anymore. We've got there and I love our son to pieces.

We seem to have had a few "future" discussions this week. Should we move to be closer to our relatives? Are we going to go back and use our other embryos? If so, when are we going to do it? It seems mad to be thinking of it so soon (right now, going back to trying to get pregnant is the last thing I want to do emotionally and physically). But I'm not getting any younger and HD is always on the horizon. If we're going to use those embryos, we haven't got the luxury of waiting for as long as I might want to.

And what about having a son via egg donation? At the moment, this isn't something that has faded. I am very aware of how grateful I am someone whose kindness knows no bounds. I remember that he's egg donation when people comment on whether he looks like me or mr F. And when I look at him, sometimes I wonder about her. Is that her hair or her eyes? What about those beautiful long fingers? Where did they come from? These aren't negative thoughts, they're just curiosities and musings of the origins of our son. I do not doubt that he is our child, mine and Mr F's. It is my breast that he feeds from, it is our voices that he responds to, us who try to soothe him...

At home with our son

2011-10-23T11:17:00.002+01:00

Fantastically, we're home and out of hospital. It is the loveliest thing in the world, being at home together, waking up at home together, watching your son sleep on your husband (at home, together).

But the last week has been both pretty traumatic and totally amazing.

We spent six days in hospital after complications both with me both and our little boy. Labour went really well, I spent alot of it in the water - either at home, or in the hospital. I used the breathing techniques and positions we had learned about in the various classes, trying to stay upright and mobile. But just as I was fully dilated, our boy's heart rate dropped. At some point during labour, he had turned and was now lying spine to spine. And they needed to get him out.

We went through to a different room for the delivery. I had to lie on the bed whilst they used the forceps to get him out. Oh my god, it was horrible. A fourth degree tear and a baby struggling to breathe. He was on my stomach for maybe 30 seconds before they had to whip him away to get him breathing. I watched as they tried to jump start his system, praying for the colour to return to him, praying that I'd hear him cry or see him move. And at the same time, they're telling me about the tear. It's not good they say, they've got to get me to theatre now. And they're giving me the details about the procedure, but our boy still wasn't right.

I spent the next two hours in theatre and I didn't see him again for six hours, I didn't hold him again for even longer. Luckily the midwife brought me an update - he was doing ok, he'd pulled out the vent before they'd even got to the end of the corridor. He'd had loads of tests done, she showed me a piece of paper with lots of numbers on. I didn't have a clue what she was showing me but she said it was ok, that he'd be ok and that she'd tell Mr F. Poor Mr F, he couldn't go with me, he couldn't go with our son. He thought I'd be away for one hour but I didn't come out for 2. He called our relatives to let them know what was going on but he wasn't really sure whether either of us would be ok...

I think they brought Mr F to me 20 mins or so after the procedure had finished. I spent that whole 20 minutes trying to watch both the doors at once, watching for him. And desperate to see him. He'd managed to spend some time with our son, he'd fed him and brought me pictures so I could see. He was in an incubator but was going to be ok. He was breathing. He was doing fine.

So we were in for six days, me because of the tear and our son because of the infection he'd picked up. They moved him quite quickly into a lower risk ward, and after a day, I was able to start expressing milk for him and later breastfeeding him. I moved off the ward and into a private room, and he joined me for our final two days.

And now we're home. Our little boy is sleeping, snug under his blanket, completely oblivious to the stress and trauma of our struggles to bring him into the world. Just as it should be. He's so clever (picking up breastfeeding at breakneck speed), relaxed and charming (winning over even the sulkier nurses and midwives in the hospital). He is truly the most gorgeous baby I have ever seen.

Woohoo! Our new arrival...

2011-10-19T18:39:00.002+01:00

Our little boy arrived at the weekend. He is truly gorgeous and absolutely perfect. He weighed 6 13 and has the biggest mass of hair you've ever seen. The delivery itself was really quite traumatic and we're both still in hospital recovering. But we're on the mend and hopefully will be home in the next few days. Will blog more when i can. In the meantime, i can finally answer the question of was it worth it with a resounding yes. All our difficulties are fading fast as we get to know our son. Our beautiful little boy. X

Baby engaged

2011-10-12T20:01:00.003+01:00

Had a midwife appointment this afternoon - with our new midwife : ) Embie is now head down, fully engaged, and facing the right way.

I'm guessing labour could probably still be a while off but it's nice to know embie's as ready as we are.

New friends, old history

2011-10-07T10:26:00.006+01:00

We've met some really lovely people through our NCT antenatal classes, and I am really looking forward to getting to know them better and spending time with them whilst we are all off on maternity leave at the same time (they're all due in October too). Maybe they won't be friends for life (who knows) but they'll be good friends to help support us through the birth and early days of embie.

At the moment, none of them know about our journey and I find myself half wanting to tell them (I don't really know why, perhaps to see if anyone else went through the same, perhaps as some weird badge of honour). But half of me doesn't want to tell them because in a way it doesn't really matter any more. Well, it will begin to matter if/when we go back for our frozens but now, in the situation we're in, it doesn't matter a jot.

It's kind of refreshing that it doesn't matter anymore and hopefully it will continue not to matter whether we tell or not.

Mat leave - day 2

2011-10-06T11:36:00.002+01:00

So far quite odd. Been doing some cooking, cleaning and ironing. Been online a fair bit to make sure I sit down every so often.

Really pleased we did those antenatal classes as I know quite a few people now who are off on maternity leave who are about to give birth anyday. And a few other mates are off on mat leave as well, so I've got various 'dates' for coffee etc. To get me out of the house as much as anything.

Been having quite a few twinges and cramps but they've been on and off for a few weeks now so I am doubting that they mean much, especially as I'm not convinced embie is engaged yet... He/she is sitting pretty high up. Midwife app next week so we'll find out then.

It's kind of odd really because you're waiting for something to happen but you don't know when it's going to happen, you don't really know how it's going to happen, and you don't really know if you'll know when it does happen. And you might be waiting for an hour, you might be waiting for four weeks. For someone who likes to plan and write lists, it's all just a bit freaky!

So back to the cleaning... : )
xx

Nearly a lady of leisure

2011-10-03T10:54:00.007+01:00

I finish work today - eek!

I am a little bit scared (it's been so long since I haven't been in 'work'). But it's definitely time to leave. I've tidied up projects as much as I can and I'm getting tired in the evenings.

But it's exciting too. Embie is nearly here afterall, and hopefully a quick chance to relax before they come. Not that I'm very good at sitting still - I've mentally lined up some jobs I want to do, and am pencilling in various friends for cake. Embie, maybe you should come just to slow me down?

And it's slightly surreal. Are you sure I'm leaving? Me, the one in the corner? To have a baby? Nah, you must mean someone else.

Dare I say it? I think we're ready

2011-09-27T15:46:00.003+01:00

Well as ready as we're ever going to be!

37 weeks and... Nursery, done. Spare bedroom (for the multitude of guests), done. Baby stuff, done and bought (pretty much). Antenatal classes, done. Tidy loose ends at work, done (pretty much). Random lists, nearly all actioned. Hospital bags are packed. And I've started reading the odd magazine and book, trying to cram before he/she arrives.

Just a couple more DIY bits to sort and a few more work things to finalise (I finish a week today), and we're there. Time seems to be whizzing by at the moment, and I am in shock it's now nearly October.

Depending on when you catch me I'm excited, nervous, eager, petrified or disbelieving that there is actually a baby in my tummy. (Are you sure there's someone in there?) But something seems to have switched in my head these last couple of days, and I'm starting to feel like I am actually ready. Like work doesn't matter anymore. Because it doesn't : ) ha ha.

Pregnancy symptoms at this point? The nausea's back (although nowhere near as bad as before and very little actual sickness), heartburn, frequent toilet trips, can't sleep at night, leaky boobs (had them a while), general aches and pains in and around my stomach. I think I felt my first braxtion hicks last night in the middle of our last antenatal class, which was weird because I couldn't feel it in myself but just randomly felt it because my hand was on my stomach at the time.

None of it really matters because embie's coming and because the end of our pregnancy feels very much in sight. Embie, I can't wait to meet you.

Bye bye crazy midwife

2011-09-14T10:30:00.003+01:00

So we were useless, I didn't manage to call anyone about our crazy midwife before our next midwife appointment. But it was ok because we knew that our next midwife was not our usual one. So whilst we were there we asked whether we could switch midwives. We didn't go into any detail and she didn't ask for any - we just said that we didn't seem to have built up a relationship with her and we wanted to swap.

So our appointments have now switched to be at the children's centre, which is literally two minutes walk away : )

And we know she can't be there because the children's centre clinic time is at the same time as her clinic at my GP. And she can't be in two places at once.

So it was my third midwife appointment where I was in tears before we reached the car. But this it was relief rather than anxiety. So my target for next time is no tears! : ) I reckon I can do it.

And the very good news is that embie is has made up his/her little growth blip, and at the moment, we're back on the line properly. This midwife (she was lovely by the way) thought that the fluctuation could have been due to the levels of amniotic fluid I am carrying - apparently not very much! Which isn't problem as long as embie can still move. The other good news is that (for now at least) embie has his/her head down. So if they stay there, it's all good but if embie manages to change position, it could be quite difficult for them to get back in the right place because there's not much wiggle room.

Stay, stay, stay. Be calm little one.

Balanced at 34 weeks

2011-09-06T21:29:00.004+01:00

I feel like I've been a right whinger these last few posts. So I want to balance up with a cheerier post to prove I'm not a complete nutjob.

The good things at 34 weeks - we've almost finished embie's room (which looks fab), we've almost got everything in that we need (thanks mostly to my wonderful, wonderful sister who has provided us with SO much stuff), I'm generally feeling fine, embie is still a right wriggler and if Mr F puts his hand on my belly, he/she will kick/headbutt/punch that same spot (very heartwarming), am enjoying attending loads of classes (yoga, antenatal, aquanatal...), am enjoying being down to a 4 day week with work and am enjoying looking at other people's children without an ache in my heart (just a glow that it'll be embie one day and the hope that everyone in the IF world gets to this place one day).

I am basically just enjoying doing all the things we never thought we'd be able to do. And am completely in shock that there's only 6 weeks til my due date. All of a sudden, in a whirl of complete summer madness, it's autumn and pregnancy has whizzed by.

Embie, we love you before you're even here. We can most definitely wait 6 weeks to meet you (grow! grow!) but we are looking forward to it enormously. As are so many other people.

Crap midwife part 2

2011-09-05T17:56:00.004+01:00

So back at the midwife yesterday.

She "measured" my fundal height as being "low", and blamed it entirely on me still being at work, generally doing too much and not resting enough. You may notice the measured is in inverted commas. That's because she's never really been that concerned with getting the tape in the right place before. And "low" is in inverted commas because she's measured me as being 32cm, which if she'd plotted it correctly on the fundus measurements chart, would actually be exactly on the 50th percentile line, ie where it should be.

So I've got an extra appointment next week to check that embie and I are still growing. The good news though is that she's not there next week, so I get to see someone else : )

And then when I got home, and I checked out the lovely internet, I saw that there are lots of reasons for a slightly low fundal height including the baby's position (how far down into the pelvis he/she is sitting, whether he/she is sideways, whether he/she is breech), my own body size (I am quite slim/short)...

I think it's a good thing that they are keeping an eye on the baby. But I don't understand how she jumped to the immediate conclusion that it was my fault for still being at work without checking the position of the baby or anything else. And I wish so much I had been better clued up before I went in there that I could have said to her well could it be the baby's position? Could it be my own body size? Could it be a blip?

It's not even like I'm doing the hours that I was. I'm down to four days a week. I go home on time and I have a lunch (two things I rarely used to do). I'm working a day a week from home (now bumped up to 2 days). So I'm only in the office two days a week and I'm making sure I am desk based pretty much all of the time.

There were two of them in there this week (her and a student) and it felt like they both launched at me about this, and blamed me entirely for this potentially slowing down in growth (if that is actually what has happened). I mean surely everyone is different anyway, not everyone is going to sit on their line at every appointment. And surely there are differences in any baby's growth.

Surely the most important thing is that embie is still growing (check), they are still moving about fairly frequently/regularly (check), that their heartbeat is strong (check), that I am fit and well with no problems (check). Not whether I measure up exactly to some bloody chart.

I was really upset about it (still am). Second appointment in a row where I've been in tears before we'd even got to the car. And then I was even more upset when I sat down and read all the other reasons for a potentially low fundal height. Especially as I found no websites that said that it was because the mother was still working or too active.

Maybe we have been busy recently, I admit that, trying to get things ready. But really I've been no more active than I would have been had I not been pregnant, much less so. I thought that it's supposed to be good to stay active, keep your energy up for labour and the birth. When I have been tired, I have sat down, taken a break. And being active keeps me happy, which surely helps the baby. I can't stand doing nothing.

So next week, when we have someone else at our appointment, we're going to ask them whether we can swap midwife. And if that does not work, I am going to look at swapping GPs. There's a new one that's closer to our home anyway.

I am just completely fed up with it/her. I don't trust her, and I don't want her anywhere near me/embie and it's making me anxious.

Funny thing is at our NCT class this weekend, the lady who was running it was very pro home birth, and she said to us (supposedly as an advantage to home births), that if we had a home birth, the chances would be high that we would have our community midwife there with us. If that's not a reason for a hospital birth, I don't know what is. Bring on the hospital!

Guilt in the corners

2011-09-02T11:58:00.004+01:00

If I admit the truth, there is some guilt nestling right at the very back of my mind. Most of the time I do very well at ignoring it but sometimes I let it creep in. Sometimes the guilt twinges.

I haven't blogged about my mother in a while, I haven't spoken to her in longer. But there is some guilt and sadness that things have turned out the way they have. That's not to say I want to go back. Right now, I can't see that ever happening. I and we are so much happier without her in our lives.

But I feel guilty because she carried me like I carry embie, she must have had hopes for me, like I hope for embie, she must have watched over me as I slept, like I will watch over embie. In her own way (and obviously it wasn't a normal way), she tried to bring us up and she tried to love us.

I don't know if she knows if we are pregnant. I have never told her but she may have heard on the grapevine. And I do wonder if she will try to get back in touch once the baby is born. And I don't know what my reaction will be to that. It would be harsh to send back a card (if one arrived) wishing us well but a card will turn into a present, which will turn into a phone call, which will get me right to where I was.

I am sitting here trying to think what my therapist would say. That it's OK to be sad when we have lost someone but that guilt is a useless emotion? That this is the choice we have made, and we know why we have made it? That I could back if I wanted, all I need to do is punch some numbers in a phone? That I could 'fix' in two seconds it if I wanted.

But I don't want it. I don't want to go back to being that person. Ever. I don't want embie to see me as that person. I don't want her to treat embie like she treated me. I want embie to grow up being loved by the people that love him/her, not being manipulated and deceived as a false pretence for love. I want my relationship with Mr F not be tainted by her in any way. I want my relationship with my sister to not be based on pulling each other through, but on the love and respect we have for each other as people rather than as her victims.

So maybe the sadness and guilt are useless emotions. They need acknowledging and then they need to be burned at the stake : )

She did carry me, she did hope for me, she did watch over me and she loved me in her own way. But somewhere in there, something was very seriously wrong. And I can't fix that for her. I can only live in the best way that I can, for me, for Mr F and our baby.

Midwife insanities

2011-08-18T11:56:00.005+01:00

My midwife is slightly insane, I get that. You kind of get used to it and her insanities but this week, she drove me a bit insane as well. It all kicked off because I wanted to ask about making a birth plan. Maybe it's not everyone's chosen path but I do like things to be written down, and I love lists. So I probably am a birth-plan type of gal even if we do throw it out of the window when we get there.

So, some classic lines from this week's appointment (it's not completely verbatim but pretty close):

Me: When do we start organising a birth plan?
Midwife: What do you need one of those for?

...

Midwife: All you need to do, when you go into labour, is have a glass of wine.
Me: I'm not drinking alcohol.
Midwife: You're not drinking alcohol? [Her, now looking slightly confused.] Then how do you relax?
Me: [completely stunned] Listening to music.
Midwife: Right, so when you go into labour, put your music on. Then stand up and dance. [She does a demo at this point, involving her standing up and leaning slightly forward, with no obvious movement, no obvious "dancing"]. That's what you need to do.

...

Midwife: I can tell you're not one of those people who will need an epidural.

....

Midwife: I don't like to tell the women what to do but I like to do things the old-fashioned way. You don't need a birth plan.

********

So cancel the yoga classes, the TENS machine, the hospital, the antenatal classes... No need to pack my bag even. Apparently, all I need to do is drink wine, stand up and lean slightly forwards. Why don't I feel reassured?

As you can probably guess, I have now decided that she is a complete nutter. And I am going to ignore pretty much everything she tells me, and know to never ask her a question again. (I really should have learned this lesson before now as she has come up with some corkers before so it is my own fault.) So, I've done some digging online and found some example birth plans. I am going to use one of those.

Thank god for the internet!

The big three-oh

2011-08-11T09:07:00.003+01:00

So we hit 30 weeks of pregnant this week. It feels like a milestone. A much better one than the last big three-oh (my 30th birthday).

Things are going well. I have cunningly used my leave to drop down to four days a week, and am planning to spend my day off catching up with friends, going to aquanatal, catching up on a few bits and bobs. Oooh and I need to get my hair cut at some point... I had my first Monday off this week and it just seemed to vanish into thin air.

We had a hospital tour yesterday evening. Which I was a little apprehensive about. I've been stuffing all thoughts of labour/childbirth into a box marked "do not open, too scary". But it was reassuring to have a look around the delivery units, see what things look like and hear about the different options available. I'm quite fancying a birthing pool (and not just because there's a disco ball in the room although I did get quite excited about that, randomly!). I feel like I'm almost looking forward to it not, in a way. Not the pain obviously. But the rest of it.

I bought myself a birthing ball, which is great fun. Just sitting on it and rolling about. The cat was a bit scared at first, then decided to lie right under it when I was trying to use it and is now just ignoring me on it. I think embie likes it anyway. S/he seems to get a bit wriggly when we are on it.

I am shattered today though. So much going on. The stress of the riots (which got to about a mile from our house on Tuesday night) and getting into and home from work in and around the riots. And the hospital (where we had our tour) is located pretty much right next to where the riots have been happening, so I was worrying about going to that and getting home from that (with the tour being in the evening). Mr F being ill (he's on the mend now). Worrying that I might be catching his illness (so far all's well)... Trying to get bits done in and around the house but struggling without Mr F and because I didn't want to overdo it if I'm potentially full of sickness germs. And because I've been quite tired this week.

Luckily, as well as having Monday off, I've got tomorrow off work as well as Mr F and I are supposed to be going away for the weekend. A last weekend away in the lakes before the baby comes and before I become too humoungous to move. Fingers crossed he's better. Fingers crossed I don't come down with it right as we leave!

I've got yoga tonight though. I definitely need it! I can't wait to do a good bit of breathing : )

Huntington's annual app

2011-07-26T17:00:00.004+01:00

So I had my annual huntington's appointment/check-up/researchy thing last week. The very good news is that I'm not symptomatic (yet). Yay! I guess I knew that already but it's always nice to hear especially when you know that sooner or later at one of these things, they're going to say that it has started.

Gulp!

But not this year.

Phew! : )

It was a bit of an odd appointment to be honest in light of my current condition. Whilst my answers to most of the questions will have remained pretty constant, there were a number directly influenced by our pregnancy...

- are you tired? yes.
- are there days when you feel too tired to do anything? yes.
- do you sleep through the night? not anymore! loo breaks and position adjustment are required.
- do you have trouble with household chores? hmmm... anything that requires bending is definitely tricky.
- do you need help with household chores? see answer to above.
- do you have trouble dressing yourself? see answer to above.
- are you still doing your hobbies? bit tricky when apparently they seemed to be on the dangerous side. I have started new ones though - do I get bonus points for that? : )
- do you have lower back ache? yes
- do you have aches and pains? oh yes.

Some of the other questions were quite random and Mr F now thinks actually he might be showing more signs than me! Ha ha.

I was getting a bit frustrated by the end of it as it's such a long day. And so many questions and tests but it was good to do something/anything that can help. And to be fair, being pregnant got me out of the MRI scan so the day was slightly shorter than it should have been.

God knows what my answers will be like next year once little embie has arrived! Am I tired? Do I sleep through the night? Do I manage my household chores? Answer: Are you having a laugh?!

And speaking of a year ago...

2011-07-18T10:41:00.004+01:00

Just received a "Customer Satisfaction Survey" from our London hospital (where we did our PGD cycles). I have been wondering if they would send another survey through (we did fill one in after our first cycle) but it's been so long since our last cycle, I was no longer expecting it. I had ish thought of writing them a letter at various points but couldn't quite bring myself to start thinking about last year again.

It is odd don't you think to send a satisfaction survey so long after completing our last cycle with them? Are they hoping I've forgotten all the bad things? Or are they just so disorganised that this is normal procedure? (Probably the latter as I think our first survey did also take a good while to arrive.)

It's unsettling to get it in the post now and it really does show a lack of empathy on their part. I don't think there would ever be a good time to fill in a survey about a stressful time in our lives but a year later, things have moved on so much... We've been to another clinic, I'm six months pregnant... I feel like we have moved on from that chapter of our lives and I am reluctant to open up the wounds again.

Not that I am going to ignore it. On the contrary, I will complete it and because I know that the survey does not really cover the issues that I want it to (or in as much detail as I would like), I will add a letter detailing our experiences and where I feel they could improve the service that they offer. And I'll probably try to respond quite quickly as it's staring at me, burning a hole in our dining room table (where it is now sitting).

But a year later? Really?

What a difference a year makes

2011-07-11T15:10:00.003+01:00

I keep thinking back over to this time last year, and how much things have changed since then.

This time last year, we were in the midst of our second PGD cycle, which was about to fail. I was better than I had been (emotionally), but the stresses of the second cycle, the endless wait for it to start and the struggles we had with the clinic in London were taking their toll. I so wanted the cycle to work but I was desperate for a way out. Spain was calling afterall. We'd had one meeting with their UK representative and I knew I would be straight on the phone to the second the cycle failed (if/when it failed). I was reading adoption books and blogs trying to get a better idea of what it entailed, I was asking questions about egg donation, trying to understand if it was the route for us. I was looking for a way out, and I was trying to protect myself from the hardships of the second cycle that was about to fail.

And now? Now, I'm 6 months pregnant, starting pregnancy yoga and painting the nursery. I look at children running in the park, and I no longer shield my heart. I tell embie, one day that'll be you. And my heart melts. Considering how long everything took to set up with London for our first two cycles, it feels like our third cycle (in Spain, using egg donation) happened in the blink of an eye.

When I look back, I just can't believe how much things have changed so quickly after so long.

I have been itching to write this post for months and haven't quite got round to it. I wanted to write it to remind me of how incredibly lucky we are but also to say to you readers, whatever you're struggling with, don't give up. It can happen.

Interview with The Stuff of Life

2011-07-08T09:01:00.002+01:00

I did a quick interview for a genetics blogger on having the test and trying for children - mentioning both PGD and egg donation, of course ; ). If you want to read it, click here.

PGD updates

2011-07-06T15:18:00.006+01:00

PGD seems to be popping up all over the place at the moment. Jono Lancaster's programme on BBC3 the other week, the programme on BBC2 last night (Should I test my genes?)... I don't know if any of you caught it, I only saw the last half hour or so. It was interesting - Adam Wishart looking at the implications of genetic testing both on individual's own health and wellbeing but also on family planning. As part of that, they followed a couple through their PGD journey.

The only disappointment for me was the lack of mention of egg/sperm/embryo donation as an option (as with the BBC3 prog). I might be wrong as I only saw the last half hour. LATER UPDATE: his details of the programme (website below) do not mention donation either, just PGD.

I know the "ideal" is to have a child that's genetically that of their parents but it irks me sometimes that it is brushed under the carpet as an option for couples in our situation and that PGD can be presented as this shiny magic bullet that's going to fix everything. At the moment PGD only works in one fifth of attempts whilst, at the clinic we went to, it was over 50%. I'm not saying donation is a magic bullet either but it should be right there discussed as one of the options in family planning in circumstances such as these.

Is it a cultural thing? Just thinking of the difference between our english doctors (very anti-donation) and and our spanish doctors (very pro)... Are we too concerned with passing on our genes than achieving a family? Why don't we discuss donation more openly?

Anyway, back to the updates. There's also an article on the BBC today about a new way forward in testing embryos that could ease the burden on the developing embryo. It sounds promising particularly for people with slightly duff eggs that don't cope particularly well with the whole IVF/PGD process...

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For info, further details on that BBC2 prog are available here.

Pregnancy clothes - tight or floaty?

2011-07-06T09:30:00.003+01:00

At the airport yesterday on the way back from our hols, I saw a pregnant lady (probably about the same stage of pregnancy as me) who was wearing a figure-hugging long peach dress. I sat there envious. For once not at her bump - I have one of those : ) - but at her choice of clothes. I was wearing a hippy-ish floral thing that just about managed to disguise much of embie. One of those is she fat or is she pregnant outfits.

My wardrobe is made up partly of stuff from ebay, stuff from my sister and odds and ends I have bought myself. I seem to be actively avoiding anything tight (consciously and subconsciously). As soon as things start to show off my pregnant bulge, I chuck them in the "too small" pile and reach for something bigger.

Why?

I am a little nervous of my figure. That is true. I have always been slim and am now finding chubby bits in places I never knew could be chubby. I have a very definite bump but I have put on weight all over the place - my boobs, my bum, my arms, under my arms, my legs, my face. And I do often feel like hiding.

I think I am also nervous of "showing off" that I am pregnant. It really scares me, everyone knowing. I don't really know why. Maybe I am wary of others, other people who are struggling... Remembering what it was like to stare longingly at other people's bumps... Is it an echo from our fertility journey?

And random people suddenly start vocalising their opinion on your figure. I've had comments from people saying how lucky I am that I have barely put on any weight (?!) to someone else jokingly asking if we're having twins (again ?!). And opinions on what I should and shouldn't wear.

What do you do? Wear tight clothes and put your bump out there or go floaty and hide?

Midway thoughts on egg donor pregnancy

2011-06-10T13:12:00.005+01:00

Most of the time I don't think about it but occasionally I do but I feel like I should blog or at least say something about being pregnant from a donor egg. I guess I don't know what being pregnant from your own egg is like so I have nothing to compare it with but these are my thoughts for anyone who is interested or thinking of going down the egg donation route...

We are pregnant thanks to the most amazing gift another woman could ever give us. A woman who has never met us, will never meet us and knows nothing about us other than our desire for a family. A thousand thank yous would never be enough for all that she has done.

When we were on the plane, heading across for the implantation, everything felt divorced from us. They'd used Mr F's frozen sperm rather than fresh, they were using someone else's eggs... The actual IVF procedure had been so reduced compared with what we were used to (no needles, no egg extraction, no HD tests...), it didn't feel real. They didn't feel like they were "ours", maybe Mr F's but not ours.

Once we saw them embies on the TV screen, their four cells blobbing about, they became more real and became more "ours". Who'd have thought the sight of four little cells could evoke such emotion? But they did.

And now, our embie has been inside for nearly 20 weeks, growing and developing. Through the scans, we've seen them develop from a cluster of cells to an actual baby with the cutest toes in the world. We've heard their heart beating loud and strong on every occasion sought. We've felt them start to shuffle and wriggle about inside me. We've worried about them, been excited about them, made decisions about them, planned for them, cried over them both in joy and anguish... We couldn't be anymore their parents.

Yes, there are tricky questions in my head. Ones that I stuff inside a box marked "deal with later"...

Will embie be ok that s/he can't trace her genetic mother?
Will embie ever run into their genetic family?
What/who will embie look like?
Will people think embie looks like me? Not that I am that fussed if embie doesn't look like me but will that be the one sentence noticeably absent from people's lips?

But mainly, I just hope for the best. Someone has given us an unbelievable gift, and with that we have stopped a fatal disease for generations to come. And now we are pregnant with all the joys and struggles that that brings. Most of all, I think about just how unbelievably excited I am about meeting embie. And how I can't wait just to watch him/her all day and to the see the face and know the person we had started to think we never would.

Ingrained pessimism

2011-06-06T13:00:00.005+01:00

Extended fertility issues seem to bring with them a cloud of pessimism, for me anyway. You start off thinking 30% success rate? Fab! We are going to be in the 30% who succeeds, we just have to believe it. We're young, we're otherwise healthy... In fact, we tell ourselves, our odds are bound to be slightly higher, they're just saying that because of those other people bringing the odds down. Those ones who obviously didn't believe enough...? (Uh? Who would they be then?)

But the attempts drip by and no success. And the attempts drip by and they say, oh maybe because of x, y or z your odds aren't quite as good as we thought. Most people of your age respond better to the drugs. Most people are luckier. Most people... blah blah. But you're not most people, you don't respond to the drugs, you're not lucky...

And then somehow a miracle happens and it works. And you can't believe it. It's wonderful. You know now you're truly lucky. It could have been so much worse. Because you touched on that so much worse, you were there, and my goodness how grateful you are to escape.

But the pessimism continues. You worry about miscarriage at the first drip of blood. You worry about the scans revealing something unmentionable as each one approaches. You worry about them not finding a heart beat. You worry you haven't heard any movement at the earliest possible moment. You worry about unforeseen problems. You worry.

Maybe everyone does, they just don't show it, they just pretend to be caught up in the excitement of finding out the gender. Really they're panicking just the same, underneath. But you know about unforeseen problems. You know what a stink they kick up and you have an inkling as to how devastated you will be if things were to wrong. You know what it's like not to be one of the lucky ones. How could you ever forget?

Anomaly scan this afternoon then. I'm feeling really positive about it, as you can tell. Ha! I'd better take a whole box of tissues this time... I've been an emotional wreck at every appointment so far, might as well be prepared and continue the trend.

*********************

Literally just back from the hospital. Everything was absolutely fine. Thank god! Didn't enjoy the scan particularly, I was too worried. But it was so very lovely seeing embie's heart and ventricles and spine and toes... and seeing embie move about. He/she got into some very interesting positions and was very active throughout the whole thing. Little wriggler : )

We haven't found out the gender. Our desire for everything to be ok outweighed any curiousity about his/her gender. So a surprise it will be, especially as I'm trying to decide if the scanner's efforts to cover the screen at various moments were what she'd normally do or if that was because there was something to see... Thinking about it I am now actually almost curious and I really haven't been up until now. Ah well, we'll find out soon enough. October really isn't that far away anymore.

Niggles and wriggles

2011-06-03T16:06:00.005+01:00

A random collection of stuff...

I went to the doctors this morning. I kept getting cystitis last year all the time and after a bit of a break, it made another visit this week. They were going to do some tests or something but it's going to have to wait til embie's born now. No chance of anti-biotics either whilst I am pregnant. His advice was cranberry juice and avoid sex. Great. They're probably going to put me on some anti-biotics long-term (on a low dose) once embie's born. Anything like this, you can't help but wonder the IVF, the drugs, the probable ovarian hyperstimulation symdrome had any lasting effects. Probably would have happened anyway.

Our scan is on Monday. It was lovely reaching 20 weeks this week but I am scared of the scan. I am my own worst enemy at the moment. Focusing too much on the possibility of bad stuff happening than the loveliness of seeing embie again. I think my paranoia hasn't been helped by knowing two couples who recently found out about some serious problems via the scan but probably our fertility journey has left me paranoid about things going wrong. So the counselling/CBT techniques are coming back into play. Tap, tap, tap...

But I am feeling embie moving about loads now, which is reassuringly lovely. He/she loves having a wriggle first thing in the morning and last thing at night. And Mr F has felt him/her too, which is even better. And we're starting to get things sorted now for embie coming, things that we've been planning for years ever since we first started our fertility journey - cleaning, sorting, painting, even doing some research on the various bits and pieces we're going to need to buy/borrow/steal : ) The possibility of embie becoming a reality is ever more present and probably why Monday's scan scares me senseless.

Come on embie, keep fighting, be ok.

Friend or foe?

2011-05-28T14:38:00.004+01:00

I can't remember if I wrote about it on the blog, I shall check... Oh look here it is. But, just as a brief summary, ages and ages ago, I lost someone I thought was a good friend through the IVF process. She called days after we'd lost our first embie to see how I was, only to end the conversation telling me that she was pregnant. Her relationship was in such early days, I didn't even know she was seeing anyone. I was reeling as she told me how wouldn't be great, who'd have thought she'd be the one passing on the baby tips. Who'd have thought she'd be pregnant first?

I didn't cope well with the loss of our first embie. It hit me very hard, and took a long time to come to terms from it and to bring myself back round again.

After, I tried to explain to her why I found it so hard to deal with her excited pregnancy babble during the midst of our loss and grief. We emailed a couple of times and then I didn't hear from her again. That was nearly two years ago.

But then today...

A random post from a well-meaning friend on my facebook mainly about a gig we went to but mentioning embie (the first time anything has been posted that even vaguely mentions I might be pregnant and I have not even confirmed that that might be the case in my response), and wham an email from this woman within 30 mins. She's so pleased we're pregnant, she hopes I have forgiven her, and she's missed me...

I had a hunch this was going to happen. And maybe, let's be fair, maybe she doesn't mean it in the way it feels. Because it feels like, oh look, Angela's out of the shit now (she's pregnant), we can be friends now that she's happy again.

It is upsetting to lose your friends in the midst of such a mess, that people so can't cope with your sorrow, they lose touch (on purpose or otherwise). But it is offensive to get back in touch now, at this first sniff of things being alright again, after two frigging years.

I don't what to say to her so I will probably leave it a couple of days. Yes, I guess I have forgiven her, she was excited, she didn't understand (and luckily, never will) and probably the last two years have flown by for her in the midst of sleepless nights and changing nappies. But I have forgotten? No. Would I ever turn to her again for support, as friends, if something happened? No. Then really, what is the point?

To tell or not to tell...?

2011-05-23T16:00:00.002+01:00

This also raised its head in the same phone call with Dad. He doesn't think we should tell embie that they are egg donation.

Embie, I hope you will forgive us if we are wrong on this, but I don't think it ever entered our heads not to tell you.

Far too many people know to ever keep it a secret. We did think at one point about limiting the number of people who knew embie was conceived via egg donation (e.g. just to immediate friends and family) but it got really complicated. Partly because of keeping track of who knew what but also because we'd been so open about our fertility journey, it was just really odd to suddenly close up. I am generally not the best at keeping my own secrets either. Other people's I am much better with, but not really my own.

I guess also because the only other person we know who's had egg donation is being open with their child about it, and has bought books to help explain it to them. They showed me the books last time we were there, and oh god, they really brought it back. Just a few simple words but the meaning behind them was humoungous. Her child really enjoys the books because they are about his beginnings and have such a happy ending. I am really looking forward to reading them to embie, even if a few tears are shed in the process.

I don't think I could ever imagine keeping a secret that huge from our child. I know it would be possible theoretically. We used an anonymous donor, it would be my name on the birth certificate... but it just doesn't seem right.

Dad was worried that they might want to trace their genetic mother. I guess I don't know the answer to that or what to do if that happens as there's no way they can trace her. We will just have to bring embie up as best as we can and hope that embie understands the decisions that we made and why we made them. But I said to Dad that we did know some details about her, a few physical characteristics and we know she's a very kind and generous lady, whoever she is.

"How do you know that?" he said...

Hmmm... let me think....

Are you going to tell your mother?

2011-05-19T18:46:00.004+01:00

Just off the phone to my dad, his question still ringing in my ear. An apt question considering I'd written a post last week about blooming mother's day, which I couldn't upload because blogger went down and which I now can't find... Balls. Balls. Balls.

Are you going to tell your mother?

It's one of those questions I easily could spend a whole therapy session exploring. Not just the question, but the asking of the question. By my dad. So as I've been kicked out of therapy for being too chirpy, we'll just have to explore it here instead.

Let's put some context around the question. I haven't spoken to my mother in over a year. Our relationship has been going downhill for a long time, and I just don't have it in me anymore to deal with her and all of her issues. Maybe that might change in the future, but it's taken me a long time (and a lot of therapy sessions) to be able to walk away and concentrate on our lives. And be happy that I am happier. I don't intend to go back now.

Dad hasn't spoken to her in years. They're divorced. Divorced for the same reasons that I walked away. Although my dad (who didn't have an abusive mother) doesn't see it in the same light. He left mum because of her behaviour but in his eyes I should forgive and forget because she's my mother.

But, as much as I love him and I do love him so very much, he wasn't there. Even when they were together, he was never home, always working. I don't blame him for that. And I totally understand that in his head, it's much easier to believe that she didn't take that anger out on me. That every time she got pissed off and he wasn't there, she didn't turn on me. Not physically, never any violence but always maliciously.

This is post-therapy me. I understand what he went through because I went through it too but I also understand, looking back as an adult, that he didn't protect me. I don't blame him for that in the slightest.

But what I do get insurmountably annoyed with is the question. Are you going to tell your mother? Asked by him.

Our pregnancy isn't a secret. But as I don't speak to her, at what point should I tell her? And would it be fair of me to tell her? "Hi mum, I'm pregnant but no you can't see the baby." If told her, that might unfairly raise her expectations that I was actually going to allow her to attempt to build a relationship with embie.

She has a right to know, Dad said. Well you tell her then, I replied. Ah no, you see because he doesn't speak to her. They got divorced, remember?

And really, I strongly question that anyone has "a right" to know we are pregnant, least of all her. Goddammit, I am annoyed with him.

Going full circle, he who failed to protect me wants to throw me back to the flames...

Therapy session over, deep breaths.... And relax....

--------------------------------------

It's the next morning, and I wish I had handled things differently.

I really struggle when Dad doesn't see the similarities between out situations. That it's one rule for him and another for me. That he can walk away but expect me to stay. I think I get so caught up in thinking that if I just explained it better, he would understand. And then it just ends up in an argument because he won't budge and neither will I.

So I need to take a different stance. No more arguments. We both need to learn agree to disagree and then leave it at that. And it is up to me to enforce this because it is only going to come back again and again when embie's born, at embie's first birthday, at embie's christening...

What can I say? Post-therapy me might understand things better but I will always need to re-assess how I handle things. And in this incidence, I got it wrong.

Midwife appointment

2011-05-09T15:48:00.004+01:00

We got to hear little embie's heartbeat again today at our midwife appointment. I don't think I could ever tire of that sound. It's just lovely. They should download it for you to take home. How fab would that be?

All going well. My blood pressure's a bit low, so she said to carry water about at all times, sit down if I feel dizzy and avoid overcrowded hot spaces (the Take That concert we're going to in a few weeks should be interesting...). But otherwise fine.

She's a little nuts our midwife. I don't really know how to explain it but generally a bit eccentric. Not in a nasty way. She's very sweet but ever so slightly... nuts. Mr F comes with me to the appointments and she makes us both chuckle.

Next appointment is back at the hospital for the 20 (ish) week scan (should be the end of May/start of June, I guess, but no date as yet) and then we're back with her probably in July now. It should be when we're 25 weeks but I think we're going to be on holiday then. Ooooh holiday. We've just started looking now for a quick getaway. Just somewhere relaxing and warm with tasty food before I get too big to move and/or the little one arrives.

Last day of drugs?

2011-05-07T14:31:00.004+01:00

I have stopped my drugs (again). I should have stopped last sunday but I've been pratting about really, taking one here, one there. Never a full dose, never even close. But enough to make feel like a safety net.

A drug free world is full of mixed feelings. If I knew everything was going to be ok... I don't know how you'd ever know that but at least if we hadn't had the bleeding, it would feel like cause for celebration to have got this far. And it is cause for celebration. Who on earth thought this would ever work? That we would ever get this far? But the bleeding was horrid and brought us straight back down to earth that this could be over oh so incredibly quickly.

But generally I don't think about such scary things. I am trying to just enjoy our lives together again, and our re-found hopes. We're looking at pregnancy classes and baby names and baby buggies, and sorting out embie's room... (I know embie isn't really an embie anymore but embie has stuck. So embie it is, for now.) It's weird in a way, all these hopes and dreams have been locked in the attic for so long, and it's like we're beginning to take our first tentative steps in there...

Happy Easter?

2011-04-26T09:16:00.005+01:00

Hope you all had a really great easter break.

Ours was a bit roller-coastery. Excellent in places (seeing family, going to the park, ice cream in the sun...) but had some truly awful moments as well.

I found some blood on Saturday afternoon. I sat there on the toilet, staring at it, momentarily thinking oh right, my period's starting, where's the tampax? Momentarily thinking, ahhhh, my period, that's why I've had a few stomach cramps... It felt like the world almost stopped whilst my brain re-configured to say actually, that's not supposed to happen. It was quite a bit of blood, much more than the spotting we'd had before. Bright red blood, staring at me, daring me to not believe it.

My family were downstairs, my husband too, chatting and laughing, getting ready to go out. I had to call him to come upstairs, to explain what I had found, away from our normal, fun family easter, away from making plans for our baby.

Mr F called the emergency number on the hospital, who told us to get down there. We didn't have to go straightaway but they wanted to see us today. So obviously, we went straightaway. Our new glorious world was crumbling away. How could we wait even for a moment?

Bank holiday weekends are probably not the ideal time to be needing a trip to the hospital but in all fairness, I think we were in with the doctor in about an hour. They checked my cervix, it was closed. And then offered us the option of whether they tried to hear the baby's heartbeat. At two days shy of 15 weeks, they said it was touch and go whether they were likely to find the heartbeat even if everything was ok. We could wait and have a scan but that was likely to be a couple of days away because of the bank holiday.

So we put our faith in you little embie. Your heart had been loud and proud in that very first internal scan even when they'd said we might not hear it. Surely, it would be there now when we needed to hear you so much. She put the gel on my stomach and turned on the machine... And the tears streamed out of the corners of my eyes whilst Mr F held tightly onto my hand... It took her a minute, it felt like 20, but there you were, little louder than a whisper. But definitely you. And then you moved and we could hear you even more clearly. The world, slightly jolted and shocked, fell back into place.

So we chatted with the doctor for a while. She was really nice. Said I might still bleed for a couple of days but that it would be old blood now, nothing to worry about. She said that we could pop back any time if we were worried and that she understood how precious you are to us. So I took it easy for the rest of the weekend, slouching about, reading the paper, barely lifting a finger.

I was supposed to stop the drugs this weekend. Saturday was meant to be the final day, it was a day I have been longing for. So desperate for this to be a "normal" pregnancy, so desperate not to be taking any medication, so desperate to be feeling less nauseous (which I have been). But you embie are so much more important than any of that. So I emailed Spain this morning to see what they say.

The memory of the sight of the blood kept returning over the weekend, stalking me, but I used my therapy techniques to turn down the colour, to put a frame round the image, to make it smaller, to distance it from me. And to remember the sound of your heart beating instead.

----------------------

Spain called - we're back on the drugs til Sunday. So not too much longer, which is good for the reasons described above and because we don't have masses left! And I think the bleeding might have stopped or at least become intermittent.

Dating scan

2011-04-11T10:58:00.002+01:00

We had our dating scan this morning. Fantastically, it all went well. Little embie is growing just as s/he should and we got a lovely little picture printed out. What a cutie! I was a little anxious this weekend as it approached, and generally just tried not to think about it. So it was very lovely when everything was good. Very emotional, I was in tears again. Whether that's our journey or the pregnancy hormones or both, who knows.

But it was so very amazing to see little embie again. Can't wait for next time : )

Petition against PETA's inappropriate conduct

2011-04-07T20:03:00.003+01:00

I read with shock a fellow blogger's post about PETA's free vasectomy campaign for pets for population control reasons, launched (and I kid you not) "in honour" of National Infertility Week.

I fail to see how launching the campaign with such a link is even remotely appropriate for all the myriad of reasons that Sushigirl explains in the post above. I only have one word, I'm afraid, arseholes.

If you're interested, sign the petition here.

Read more here as well.

12 weeks, and hormone crazy...

2011-04-06T17:34:00.004+01:00

Amazingly, we've hit the 12 weeks. Things are changing all the time, not only for embie.

We've changed our morning routine so I don't have to smell food or go in the fridge (Mr F is now officially in charge of all food making). (I am still pretty nauesous but I think it's getting better.) I live in leggings. Literally. Leggings are my new uniform. Leggings and baggy tops. My body is changing all the time evidenced by my swelling tummy. Some days it looks bigger than others, some days, you struggle to see much. And my hormones are going crazy. If anyone tells me anything even slightly bad, I feel really, truly, properly heartbroken and just want to cry.

We're cracking on with some necessary DIY before little embie comes. So the house is a state, which is in direct conflict with my usual spring clean and completely confusing me.

We've met our community midwife. Who, although lovely, is nuts. Her parting words to us were lie to everyone about everything about the pregnancy. The less people know the better.

We've got our scan next week, which half scares the shite out of me, and half fills me with joy.

Oh and I've taught myself to knit. I'm knitting embie a blanket. Which has started off a knitting craze so that now my mother-in-law and my nanna-in-law are knitting as well... Who knew!

I still feel wary of the pregnancy. I still feel like it might all come crumbling down. I still feel separate from other pregnant people, not quite sure how to interact with them. But every now and then the excitement kicks in and I don't want to hold it back. I am so so excited about meeting you embie and seeing you again next week. Just don't let anything bad be happening - I'm crying at such stupid things at the moment, god knows how I would cope with something properly bad!

Antenatal booking in

2011-03-15T14:33:00.002Z

We had our antenatal booking in appointment this morning. And the very excellent news is that we have today been labelled as having a “routine low risk pregnancy”. Oh yeah. That makes me smile.

Huntington’s has been thrown back out of the picture. The consultant was not really all that sure why we’d been put down as needing a special appointment with her, and just said everything looked fine and we’d just be able to carry on with the routine appointments, no extra ones needed.

I was quite scared last night and this morning about how HD might still yet have a role to play in this pregnancy, and so it was a massive relief to be told, nah, just get on with it. You wonder why we had the phone call in the first place but I guess maybe there was a flag on my name or something? I don't know.

It was quite a long appointment actually. I hadn’t really known what to expect. They took our medical histories, weighed me and measured my height, asked us about the downs test (no thanks), had some blood taken but they only needed to do a rubella check. No need for HIV, hepatitis or syphilis tests as organised me : ) had read the leaflets last night and then dug out all the test results from january for the IVF. We had a few extra complications to explain. Why had we been trying for three years yet I had been on the pill? Why didn’t I really seem to know anything at all about my natural cycle? And then the nature of the egg donation meant that the sickle cell tests etc are less relevant for us, and also means that there are two blood groups to account for rather than one (the egg donor was A+ and I am O+).

The waiting room was a bit traumatic though, especially as we had to wait for over an hour, it was really stuffy, everything seemed to be broken (the water fountain, one of the TVs, the men’s loos…) and at various points, I quite fancied a good puke. But it was also like a scary horror movie for IFFers. So many pregnant people, all stroking their swollen bellies, and no escape. Small children looking cute. Lots of posters about breastfeeding, a video about cot death and how to lie the baby down… Baby? Don't you know I am too scared to think that far ahead? I ended up having to do some sly breathing techniques. I told Mr F they should have separate rooms for people who have struggled, it’s just too overwhelming being thrust back into the normal world and being expected to survive unscathed!

But I guess I need to re-examine my own head. I don’t know what any of those women’s stories are in relation to their pregnancy or otherwise. So next time we go in, I am going to tell myself that they struggled too. Maybe they won’t seem quite as scary.

8 weeks

2011-03-12T18:15:00.002Z

8 weeks in now. Still can't believe it. The scan feels like a dream. I'm so glad we asked for a print out, as blobby as embie was at that stage - I don't think I'd believe it actually happened otherwise.

Still taking it pretty easy. I get quite tired, and the nausea prevents me from doing too much, especially during the week. I have switched cycling to "gentle yoga" and knitting. As I am wondering whether it's the combo of the drugs and the pregnancy hormones making things not easy, I am looking forward with great excitement to the magical day when I stop taking the meds - 23 April. Although I know I will be shit scared (fingers crossed we get that far) to suddenly come off the drugs. Maybe I could syphon some off and carry on taking them on the sly?

We've got the appointment with the consultant on Tuesday, and then a midwife appointment the week after. Our first "normal" appointments. Well apart from the fact that HD will be rearing its ugly head in the consultant appointment. Our first non-IVF appointments at any rate. I feel a little nervous about both, like I'm a fraud about to get found out.

Quite a few people know now, people who've been involved in the IVF journey. But not my work and not our wider circle of friends. Sometimes I wonder how long I can guard our "secret" from the wider world, trying to stretch it out as long as possible, enjoying the deliciousness of it. But the possibility of needing extra hospital appointments (because of HD) is going to make it difficult to keep from work for too much longer. I've had to take leave on Tuesday specifically so that I don't have to take our hospital letter in as proof of my appointment (which very annoyingly is work's policy re: hospital appointments). Whilst my line manager has been fab and probably would have let me get away with it, she actually went off sick (and could potentially be off work for a while), and I am loathe to bring it up with her stand-ins. So I figured I would take leave this time. And try and think of a new strategy for future appointments if needed.

Unexpectedly, the hospital letter brought with it a decision that we didn't realise we'd have to consider. Whether we wanted to test for downs. We ignored it for a little while but think we've come to a decision of no, no test. Probably different people decide different things, but for us, if little embie has downs, we couldn't abort after so long of wanting him/her to be.

And in the space of what... 6 weeks...? since our two lines made their brave little appearance, there have been 4 "normal" pregnancy announcements. I would love to say that I brushed them off with a huge smile on my face, but I haven't always found them easy. My IF brain struggling to shake off its past, struggling to overcome the jealousy of a normal pregnancy. Especially when all of them have reached the almost golden "12 weeks". I envy that they've got pregnant from having sex, I envy that there were no doctors present, that their bladder wasn't full to bursting at the moment of pregnancy, I envy that their child is genetically theirs (even though I know it makes no bleedin difference), I envy that they had the option to keep it completely under wraps for 12 weeks.

But things are good. Mr F has continued to shine in his knight's armour, making me breakfast, holding my hair back when I puke, doing loads around the house... I am getting a little belly. It's probably more from the amount of food I'm eating than embie but it's there. My dad's dropping off random food items when he passes. My sister is stockpiling anything in her house that is maternity or baby-related, ready to drop it off the moment we give her the signal. My mother in law is ordering me to rest every chance she gets. I wouldn't admit it to anyone, but it's nice being fussed around.

Other blogs/info on movement disease

2011-03-12T17:20:00.003Z

This website has collated a list of other blogs/websites that deal with movement diseases. It's mainly about Parkinsons but there are a few other bits as well in relation to HD, Alzheimers etc.

"New fertility technique to be assessed by regulator"

2011-03-12T10:16:00.002Z

Newcastle University are developing new IVF techniques to prevent the passing on of the genetic mitochondrial disease by integrating a small sample of genetic material from a donor egg in a fertilised egg. This doesn't have direct implications for Huntington's, but it's great to read of techniques which offer new hope for tackling genetic diseases whatever they are.

Read the article here.

Baby loss depression 'lasts years'

2011-03-05T10:31:00.002Z

The BBC posted an article the other day about a study identifying that mothers may suffer depression or anxiety for years after a miscarriage. For those of us unfortunate to be suffering or have suffered from fertility issues, you'd be forgiven for immediately thinking "no shit!". It's not exactly rocket science but it's still an important study in that it might raise some awareness the massive impact that such losses have on our lives. Maybe it will make someone out there, whether they are a doctor a nurse or just an ordinary bod, stop and think for a moment.

Click here for the story.

I think it's a shame though that it focused so heavily on the mothers. I know one research project cannot focus on every single unanswered question. The resources simply are not there.

But I cannot help but think what about the fathers? I know from our experience, people tend to focus more heavily on me - "How's Angela?", and when something went wrong "Oh Angela must be gutted" etc. Maybe our journeys have not been exactly the same but as well as experiencing the ups and downs of IVF, he has had the extra burden of coping with me. Coping with me when I am on the meds, coping with my discomfort during the procedures, coping when I have gone into meltdown... Support mechamisms need to consider both parents.

Anyhow, researchers, if you're reading, maybe it's a question to investigate on another day. Because there's not a chance I could have got through this and got to where we are without him.

Love you Mr F with all my heart and soul. This is journey, with all its ups and downs, is ours, not mine. We are pregnant, not me.

One little heart beating clear and strong

2011-02-28T15:27:00.002Z

We had our scan today, and saw our little embryo again. Only one embryo was there (there was no sign of the other one), and whilst there was/is sadness for another lost little one, we are so very happy that our one is doing so well.

There is a little heart beating inside of me, a little HD-free heart, and that thought fills me with joy.

I feel so lucky to have got this far. I really do. Come on little embie, keep on being, keep on growing. We love you so much. And I absolutely cannot wait to see you again.

Scan today - eek!

2011-02-28T10:47:00.002Z

We've got our first scan today. I don't know whether to be petrified (what if it's all just been a dream?) or extremely excited.

I am shivering but I think that is the temperature in the office rather than anything else...

Weird?

2011-02-23T14:08:00.003Z

Just had a phone call from the local maternity hospital. They're moving my March scan appointment so I can see a consultant at the same time because of me carrying Huntington's. She said they would be keeping a closer eye on me throughout the pregnancy. I am a bit confused as to why - I am not symtomatic, and as I said to the girl on the phone, our embryo(s) will not be affected.

Any ideas?

Spotting seems to be intermittent today. Just a little bit of blood occasionally, and normally around the time I use the pessaries. The clinic have suggested using the pessaries rectally but I think I would struggle with that. I also called our early pregnancy unit this morning for a bit more reassurance - they offered an appointment but because it's not urgent, it would have been after our scan next week. So no point really.

Panic over

2011-02-22T19:30:00.001Z

Looks like it was spotting. Clinic have ordered bed rest so hero Mr F came to take me home from work again We have to keep them updated but it seems to have stopped. Phew.

Blood?

2011-02-22T15:16:00.003Z

I just found a little spot of blood. I am managing to stay relatively calm. The doctors did say there might be some spotting with the medication I am on. Mr F is going to phone them now. And I know people who have bled during pregnancy and it hasn't meant the end.

So all in, I am relatively calm.

But it's still blood.

Update

2011-02-22T14:28:00.006Z

I think I have struggled a bit with updating the blog again in some ways since our positive news. A million a one options swarming in my head...

The knowledge that I sometimes struggled when others' got their positive result.

The wariness of how far there is too go. Even though I have never experienced the loss of a pregnancy after a positive test, being in some ways involved in the fertility networks, you read others' stories and know we are lucky to be where we are now.

The heady excitement. But is hard to post about excitement and joy when you know there are others stuck where we were.

The morning sickness. On the one hand I love it, it reassures me that the embie/embies are there. And I haven't actually been sick, which is great. But the nausea has not been easy to deal with. Some days are ok (thank you for these), and some days are more difficult than I want them to be. I'm not complaining - I would take nausea all day, every day over the pain of an IVF failure, but there's no point in pretending that everything is as rosy as my head would like it to be.

The scans. Our early scan as requested by the clinic is next week : ) And whilst we couldn't get it in with the NHS maternity department (despite my GP's efforts), it is at least in the local hospital and on the day we wanted it to be. And we're booked in for our normal scan as well at the end of March. This one was nice and easy to fix.

Looking back and looking forward. If infertility is an island, and we are now travelling back to the mainland (as suggested in Mel's book), I can see and feel the people on the shore of the mainland waiting to welcome us back into the folds of normality, but will we ever feel normal? Will we fit in? Will we want to? Because I can also see and feel the people we are "leaving behind", people who have their own stories to tell, people who have been trying longer than us, people who we love, people who we never want to be hurting... Do we ever really leave?

I don't really know what this entry is. Maybe it's re-adjustment?

So what comes next?

2011-02-16T09:27:00.003Z

I have struggled so many times to imagine what happens after a positive pregnancy test. I know exactly what to expect after a negative pregnancy test. Crying, lots of crying... Devastation... A black hole...

But a positive test? I had no idea.

I have a fair idea now : ) Lots of lovely people wishing us well both online (thank you) and in our day to day lives. Our families and friends are excited for us, and their family and friends are excited for us. We get messages of congratulations passed along the line of friends and family from people we barely know or have never met. It is so very heart-warming.

It becomes incredibly apparent just how many people are tangled up in our story, how many people have kept their fingers crossed, have whispered a prayer, have dared to hope where we might not have been able to. This embie / These embies have been longed for and loved for so long. And not just by us.

And then there's a series of lasts. My last acupuncture this afternoon. My last therapy appointment last night. It was the first therapy session where the only tears I shed were of happiness...

Because we can look at each and say "We've stopped it. We've stopped huntington's." And that thought alone is so powerful it consumes me. Our children, their children, their children, their children, their children... Descendants who we will never meet, but people who's lives won't be affected by huntington's.

And yes I have got some much-longed for early pregnancy symtoms : ) but mainly we are just incredibly excited with moments of calmness where we tell ourselves it's still early days. But what early days they are. Thank you.

Good news!

2011-02-14T09:35:00.002Z

We are pregnant!

We did the pregnancy test on Friday morning (day 13), me crying my eyes out and shaking before I had even sat down on the toilet. I was in such a state! And then before I had even got off the toilet, Mr F turned to me and said my name, and I knew the two lines were there. And I just carried on crying anyway! I couldn't believe it, I still can't. Mr F was still trying to pry the test out of my hands an hour later.

I know we've got such a long way still to go, but we are both so happy that for the first time ever, it's a positive test.

The test draws ever closer

2011-02-10T09:28:00.002Z

I have been working from home since Monday's craziness, and on the whole feeling much more relaxed. Much, much calmer. But with the test now approaching, edginess and nerves are creeping back in.

There have been moments this week where I felt I knew I was pregnant, and moments this week where I knew I was not. But now with the test around the corner and memories of tests gone by sweeping in around me, my mind is playing tricks on me. We have only ever experienced negative tests, so how on earth could I be thinking it would be any other way...? In some ways, I feel like the calm before the storm. I really felt this one could work, and I know I'll be devastated if it hasn't.

We are wondering about whether to do the test a day early. We're away tomorrow you see, for a weekend that was planned way in advance of us having any IVF dates (because, as Shona said, life has to carry on). And we're worried that Saturday won't be a "good" time to take the test being away from home. But will tomorrow? With a four and a half hour drive to conquer? As Mr F rightly said this morning there's no good time for bad news, and no bad time for good news.

I honestly don't know if I can cope with another failed cycle, emotionally, and today I really am struggling to see how it could be another way. It probably sounds like I have given up, but I absolutely haven't. I am just so very scared.

First day back at work

2011-02-07T19:23:00.003Z

Hmmmm... Maybe that didn't go so well. I managed to stay relatively calm for the big scary stuff and then went to pieces over some relatively small things. Everytime I told myself I needed to calm down, the stress got worse and then I ended up in a great big blubbery mess and my hero Mr F had to come and get me.

I so hope embies are ok. That was what was worrying me more than anything. How will I forgive myself if...?

The in-betweeny bit

2011-02-06T07:15:00.003Z

We're half way now in our two week wait. It's not been too bad, so far. Everyone has been incredibly supportive, I have managed to stay pretty chilled and the stomach cramps have eased considerably. (I contacted the clinic about these in the end, who said they were normal.)

I have to go back to work tomorrow though - urgh! A worry I could well do without.

I'll probably just plug my ipod in and hide from the world. That and I've just thought of a genius plan to make use of one of the quieter offices...

I guess going back to work might help stem the thought swirl of "Am I pregnant? Am I not?". As to be honest, it's been quite handy at times this week having small bits of odds and ends for work that I could do at a distance (geographically and psychologically) and which kept my mind at bay.

In fact, I'm going to do some bits now as I am awake far too early for some unknown reason and Mr F is fast asleep.

PUPO symptoms

2011-02-03T17:35:00.003Z

I started getting some stomach cramps last night - a little like period pains really. They've been off and on, but mostly on so far this evening. And the left side of stomach (where I think they implanted our embies) feels really warm, like I've got a little heat pad on my side blasting out a central heating.

I feel pretty relaxed about it. I'm not going to kid myself that this necessarily means anything. Oh have I been there and done that before!

OK so admittedly, I have been back on google searching early pregnancy symptoms again but that was only briefly. Now, I think maybe I should just accept that whatever's happening is happening and anything that is happening could literally mean anything or absolutely nothing.

But I thought all the same, whilst I sit here being off work, I might as well write something as nothing : )

Come on the embies, please be ok.

Me? Erratic?

2011-02-03T11:00:00.003Z

I keep finding myself behaving strangely...

One second I was remembering that I needed to take my medication and was looking for a toilet, and then the next time I remembered it was two hours later and I was two hours late in taking it. Ooops.

I only ate half a sandwich at lunch yesterday. Which might not sound that bizarre but I am bottomless pit when it come to food and ALWAYS clear my plate.

And the worst confession....

In the last two days, I have accidentally stolen two items on two separate occasions from a large supermarket chains (different shops but the same chain). Honestly, I didn't mean to and it took me ten minutes to realise after I did it yesterday. Mr F says they'll be putting up wanted posters of me, and I won't be allowed back in now.

Other than that, I am absolutely fine : ) Just a little disturbed by my strangeness.

Travelling home with an extra special package

2011-02-01T11:33:00.003Z

So half an hour after I posted my last post, and half an hour before we left for the airport, the good news came through. 9 eggs had been retrieved, 8 were mature and 5 had fertilised. Oh the relief.

We were bouncing. Already better than our first cycle in a matter of moments. Such good news, but I felt strangely detached. We were going to across to pick up Mr F's embryos, they didn't feel like ours, they didn't feel like mine. But I took a deep breath and told myself, this was the best chance we've ever had at becoming pregnant. Sod the genes.

Saturday morning, we were at the clinic bright and early. So early, we did a quick walk around the block to kill time. We talked about what might lie ahead. Maybe they'd all have died overnight, maybe all five would be perfect. Don't be daft, we told ourselves. Take a deep breath, all we need is one. One good one, but one all the same.

It took an age to see the doctor, all the other couples went in first. I was desperately trying to fill my bladder for the procedure. I went a bit far, I was so desperate for the loo, that soon clouded my thoughts of anything else! Oopsie. I had to go to the loo in the end, and then start downing water again.

But we went into see the doctor - "I've got extraordinary news". Mr F and I sat there scared stiff, thinking that they had indeed all died. It took a little while for the news to sink in but they were all good, all five. All five were perfect, all five were so good they were "textbook". They were going to implant two and freeze three. So obviously, I burst into tears.

Five were good, no five were perfect! Our five?! Are you sure? You are? Oh, my god! Five!

Before the implantation, we saw a little dvd our our two chosen embryos, their four perfect little cells blobbing about, their little nuclei, their little edges, blobbing. Honestly, I could have cried again. The doctor proudly telling us again how good they were, patting Mr F on the back congratulating Mr F on his extraordinary sperm! And then they were inside me. Our little embryos.

We spent the rest of the resting, a bit of sleeping, a bit of munching. Did a bit of sightseeing the next day but not too much because I was tired. And I'm on the pessaries again now, so my boobs are back. Woohoo! Although they do hurt...

We brought our two little embies home last night. We're home now. Just hoping. Praying our best chance(s) ever will work. And trying to stay relaxed, keep smiling. So far, I feel less stressed than I have done the previous two times but it's early days and I'm sure there'll be bad days in this two week stretch. But I'm off work for the rest of the week, I've got some good tunes on, do some yoga, get my hair cut, I'm going to meet some friends later on...

All I can think is this was absolutely the right decision, and the best thing we have done. PGD and me didn't mix. If we'd have kept going (as advised to by our doctor at the time), we could have kept going for forever and not had been as successful as we have been this time. Maybe this cycle won't work, maybe it will but whatever happens, egg donation and a change in clinic was totally the right way to go. Less stress, more considerate staff, better quality eggs... We've been amazingly lucky both in terms of the financial help we've had to do this and our wonderful donors.

Wherever you are, whoever you are, from the bottom of our hearts and our souls, whether this works or not, thank you so so much.

I'm scared

2011-01-28T08:50:00.001Z

We both are. We leave for the airport in one hour, and we don't know how many eggs were retrieved, how many fertilised, how many are still growing...

But the flights and hotel are booked - left them til the absolute last minute. And we are packed.

Might be time to do some tapping.

We're on again

2011-01-25T09:22:00.000Z

So our back-up donor is ready for her egg extraction, with our egg transfer now newly booked in for Saturday.

Whoever is out there, thank you.

Yesterday was not easy. No, yesterday was horrible. Sometimes, I just seem to get worse with waiting the longer we are in this process. And I think I was due a cry from the transfer getting cancelled on Friday - I bottled it in and just kept running away from it until it caught up with me last night. Poor Mr F came home to find me curled up in bed, hiding from the world.

And then, amazingly the call came through right there and then. I still struggled to pull myself back round - I had been so distraught, it was difficult to suddenly celebrate especially knowing that there is still so long to go even before the implantation. And then this morning was the first day of the new patches so I had the fresh onslaught of hormones to battle with (along with the accompanying nausea and foul mood) as well as letting go of the stress of the last few days.

This afternoon, the world is calm again. I plugged my music in, I gave myself a much required kick up the arse, and I am pretty much back to normal now. Phew!

How early is early?

2011-01-24T09:19:00.004Z

Egg donation feels a little weird after two cycles of using our own eggs. We're so detached from everything, which on the one hand is good. It makes it a little easier when things go wrong (as they did on Friday) but on the other hand, we're so removed from everything (geographically and biologically), we don't really know what's going on.

With London, as frustrating as it was, there were set days for scans, extractions and implantations. In Spain, things seem much more fluid. Which makes perfect sense considering that our bodies are react in different ways and at different times.

But it does leave me feeling a little bit lost...

So, anyway, we should here this week. "Early" this week they said. So to me, that means today or tomorrow although they didn't want to specify a day. Waiting has not been easy. I feel like I have been running away from my head all weekend, doing everything possible to distract myself and not think. And now, it's Monday, I am back at my desk. And I feel little overwhelmed with everything that is going on and everything that is not.

Come on back-up donor, be ok. Come on phone, ring.

The latest twist

2011-01-21T10:18:00.003Z

The donor had her extraction this morning but she didn't produce enough eggs (they guarantee we get six from a cycle). We've been switched to our back-up donor, and we'll hopefully know more next week about when she's likely to be ready to have the extraction.

Balls.

So we've cancelled our flights and cancelled our leave. Everything's back on hold.

Thank you donor, thank you so much for trying. I hope you are ok.

We're off (well, almost)

2011-01-20T15:21:00.004Z

So just as I was preparing myself for the long haul... And just as I was teaching myself that patience is a virtue I really must rediscover... Spain called. We leave on Sunday, for implantation on Monday.

They're doing the extraction tomorrow, using Mark's frozen sperm from the sample he gave last time. I thought we were going out there in time to donate fresh, and didn't even realise that they'd kept a batch of sperm back for the freezer so my head's a bit topsy turvy at the moment.

Must plan, must pack, must book, must sort...

Must make a list : ) I love a good list.

Must stay calm. Mustn't forget that one.

Scan and update

2011-01-19T17:14:00.003Z

Had my scan today at the local hospital. Everything is all going well, and my womb is the right thickness for receiving a little embryo (this morning standing at 7.3mm).

Now all we have to do is wait for the donor to be ready. We called Spain - they confirmed I am ready to go, and said it's just a case of waiting for the donor to be ready now. So we could be heading off in anywhere between two and ten days, which feels like a mammoth difference at the moment. Especially trying to explain it to my line manager! Who to be fair is being really good.

Been having a few complications with the money - they give you a discount for paying cash but it's difficult to find somewhere with a good exchange rate that lets you convert that much cash all in one go. So we're doing it in stages. I am a little bit terrified about going through the airport and generally having that much cash but am trying not to think about it too much.

Been feeling much better today. Much more sane and on top of things.

Patches - day something or other

2011-01-18T09:24:00.004Z

I have been on the patches nerly a week now, I think. On the whole I am fine with them. They are obviously a bit easier to deal with than the injections etc. But I am having some mood swings (wanting to cry but not really being sure why) and I have been feeling really quite nauseous. I could quite happily go to the toilet and be sick now. Or I could quite happily curl up and cry. Either one would be good.

I am definitely feeling sorry for myself. All my energy is trying to focus on staying calm, not getting stressed, looking after myself. But it is an ongoing battle in the face of constant deadlines at work, family negotiations, and all the bumph which goes with life. I am tired, fed up and whingey.

And rather randomly, a good friend struggled to understand yesterday why I was not excited...

...

And I am now going to give myself a severe kick up the bum because for eff's sake Angela, there's someone out there taking the drugs for you, doing the injections, having the mood swings, feeling the bloatiness, feeling like rubbish... Someone very very very lovely. So stop being a whingey ungrateful pain in the bum and get on with it.

Government consultation on egg/sperm donation

2011-01-17T11:00:00.004Z

In case you missed it, the Human Fertilisation and Embryology Authority are launching a consultation on current laws / guidelines around egg and sperm donation. They are trying to stop naughty people like me and Mr F legging it to Spain for treatment.

See here for the related BBC news article. Although if you read it, ignore the silly lady's comment about the best way to reduce fertility issues is to encourage women to have children earlier. Whilst that is indeed important, it's not always possible and is not always relevant. Anyway, I very nearly started to get angry with her, but then took a deep breath and relaxed (thinking about my counselling techniques and my need to stay relaxed).

But if you want to respond, the direct link to the consultation is here. The closing date for responses is 8 April 2011. It's open to anyone whether you are having fertility treatment, provide fertility treatment or are merely interested in having a say.

So, go on, get involved. Whatever your view.

Patches - day one

2011-01-13T16:09:00.002Z

I did feel ever so slightly apprehensive about putting on the patches last night. Like I needed to take one massive deep breath, tell myself it will be alright, and get on with it. Mr F was there though, peeling off the sticky back stuff, which was reassuring. I'm not sure how I would have done it without him.

After much thought of where they were going to go (needing to be out of sunlight, away from tight clothes), I decided to put them on my side. I don't think it's the best place for them though, as you move your body from your hips all the time, so they are constantly moving and I feel very aware of them. So when I change them in four days time, I am going to go for outer, upper thigh. I feel worried that they are going to fall off (and avoided too much scrubbing in the shower) but so far they are definitely on and I cand definitely feel them.

Any side effects as yet? Probably not. I did feel a bit loopy this morning, and nearly burst into tears reading the paper, but I think that's just because of the whole situation rather than a rush of hormones. Feeling fine now. Although am off to my counselling session in a sec, so am storing things up to work through with her. I'm definitely due a session!

We have got our first scan next wednesday. Amazingly, it's at our local hospital. They've always flat out refused to help us with anything before because we weren't having our whole cycle with them, but it turned out that you just needed to get in touch with the right person... IE in this case, the person in charge of private treatment, not the receptionist. It is unbelievable what you learn over the course of time in these things.

And so it begins (again)

2011-01-12T22:58:00.000Z

Period has started, patches are on. Here it goes.

The build up to round three

2011-01-12T16:08:00.001Z

If my period plays ball, I should start the drugs later today. I brought the patches into work just in case. My period doesn’t normally start until late at night, so I am probably being a bit overly optimistic but you never know.

The past couple of weeks have not been easy, it has to be said. Arguments between family members trying to draw me in. The threat of redundancy looming over head, thankfully not so much for me at the moment but for my team who are dropping from four to one in the next two months. The knowledge that this could be my final chance to get pregnant. And even though I know in my head and my heart that pregnancy is not the end goal and there are other routes to having a family, the thought (if I let it in) breaks my heart in two and threatens to absorb everything.

Most of the time I am fine but sometimes, I feel like I am hanging on desperately trying to stop myself from breaking into tears. And this is even before I start the medication!

What a time to be trying to start a family in the middle of massive job losses?! But how could we possibly put it on hold?

And then there are the other people. Some of the other people are so kind and so supportive… Their help and their words mean so much, it’s a fight to hold back the tears. Inevitably, some of the other people are, and I mean this in the nicest possible way, a pain in the bum. With suggestions that we should just keep going with IVF because it is “just a numbers game”. And so the weight of expectation from other people is heavy even though I continue to ask myself why I care.

This time though with our new clinic and even newer medical assistant (after we asked for a transfer following the mix-up), we have actually been given some advice in preparation for round 3. Avoid stress (considering the above, I am struggling with here), acupuncture (am literally just back), eat a balanced diet but include the following foods: black beans, lentils, spinach, orange juice, peanuts, broccoli, cereal, asparagus (yum). Eat fresh or steamed veg (yum again). Cut down on alcohol (sorted).

So we have updated our blood test results for HIV etc as they ran out in December. The drugs have arrived in the post (only slightly delayed by last month’s snow). And we have made enquiries at local clinics for performing our first scan. Literally all that is left to do is decide where I am going to stick my patches and start my period. So body, if you could co-operate and get going on that, I would be most grateful.

We're matched (again!)

2010-12-29T12:07:00.002Z

Good news... No sooner than our new advisor had introduced themselves, that we got an email saying that we'd been matched with a new donor. I am to come off the pill in two weeks, and then on the period that starts immediately after (that one not the next one, obviously), I start with the medication. The medication is in the form of patches. Two at a time, staying on for four days. Just a little bit easier than injections!

I honestly have no idea how I am feeling as we go into the third cycle.

Delays

2010-12-21T13:34:00.002Z

I have been doing good you know. A little bit worried about how much there is to do before Christmas. A little bit wary of our forthcoming trip to Spain. But mainly good.

Amazed at the difference between now and this time last year. Last Christmas, there were moments when I was barely hanging on, so deeply was I grieving. This year, everything just feels like, yes it’s taking blooming ages, but things are back in place. Maybe it won’t work but we’re with a good clinic and at least the process will be a better experience.

Because this time, we’re paying an absolute fortune. This time, we’re the customer. That will make a difference won’t it?

So we got matched, good news. The clinic emailed with new instructions. Stop taking the pill. Wait for your period to stop. Wait for your next period, then email us and start the drugs. We emailed to double check everything, just so there was no confusion.

So I stopped taking the pill, my period started and stopped, and we began waiting for my next period, which knowing my natural cycles would probably be next year – late January, maybe February.

So they emailed Mr F today. Has she stopped taking the pill? Yes. Has she started her period? Yes. Did she start taking the medication on the first day of her period? Err… no. That wasn’t what you told us to do. When we double checked which period you meant, you said the next one, not this one. Oh but actually they meant this one. We really should have double checked if we weren’t sure. Oh but we did. Oh well it’s OK, they’re sorry for being misleading.

So back to the drawing board. They need to re-match us.

They reckon we’ll be in Spain in 6-8 weeks. I’m not sure quite how when Christmas is around the corner and it took 5 weeks to match us last time.

So my lesson learned for today is that you can pay an absolute fortune for IVF, go to a leading clinic, go to a clinic recommended by everyone you speak to (and it has been) but apparently it still doesn’t mean that they will actually look after you or provide customer care. I mean, afterall, why should they look after you in such a process? A process littered with stress, a process can fail because of stress.

Our last two IVF experiences have been horrendous and at the end of both of those I’d had enough. We went for one more go at a recommended clinic to give it one last go but if they’re going to turn out to be like London, then I really just want nothing to do with them. Keep our deposit. Use it as an investment to build your customer care.

I just want to walk away.

----------

It's two hours and two snotty emails from me later. The guy from the clinic has apologised, properly this time, and offered to find us another advisor if we want. It's good to have an apology. Not something we ever had from London.

Maybe I've over-reacted because of what we've gone through already, maybe I'm being pathetic and just need to get on with it again. But I feel numb and all I want is to go home and cry.

----------

The next morning. I've spoken with Mr F, and it turns out the guy from the clinic didn't apologise as such. Well he did but at the same time as trying to blame us for what was blatantly his mistake. We've asked to change medical assistants.

I feel sick. Physically sick.

We're matched

2010-12-09T19:52:00.003Z

It took a little longer than expected but we're matched. Good news : D

I know you'll never read this potential egg donors but we thank you from the very bottom of our hearts. Even if this doesn't work, we will be forever grateful for your kindness. Thank you. Thank you so much.

What will be, will be

2010-11-08T17:15:00.004Z

It's funny in a way. Two cycles we have had now, two cycles where we got to implantation but never made it to a positive pregnancy test. Considering our apparent problems with egg quality and knowing of others' struggles to even get that far, we know how lucky we were in some ways.

But with two failed cycles in the bag and nothing else, sometimes you struggle to think how that test could ever be positive. You have no experience of it. No experience of knowing what would happen next or even what it would feel like. Do pregnancy tests even have a second line?

And even though I know that we have a much better chance this time, in some ways the statistics don't mean anything (a funny thing to say when I deal with stats and probability all the time as part of my job). But either we'll be successful or not, we won't get 60% of a baby.

And so I often find myself imagining making the phone call to the adoption agency, imagining the questions that they will ask, wondering what the training is like, wondering what they child we adopt might be called, hoping it won't be something awful... Much less frequently do I imagine that the IVF cycle might work.

Now this isn't too say that I don't hope with all my heart that it will work. Because obviously I do. Nor is it a cry for help from you readers to bolster my spirits and tell me of course it will work. Because it's not. You wouldn't believe how many people at the moment are telling me that it worked for such and such on their third cycle. Their heart is in the right place so rarely do I ask what that has to do with our situation...

This post is more an observation of how things have changed so much in the past couple of years. I have a more thought out strategy for failure than success. It doesn't worry me, because I whilst we will be completely shocked if it actually does work, I'm sure we'll figure it out.

Matchy patch

2010-11-04T17:32:00.003Z

Email sent. All the test they needed are in (blood group, karyotype). They are matching us now to our prospective egg donors.

Nearly time to start our third cycle

2010-10-28T18:52:00.004+01:00

This time feels different to last time. And it feels different to the time before. I feel much calmer than either cycle. Much more able to deal with it, and much more able to face what comes afterwards (unless of course we do actually get pregnant, ha!). I don't know if I've blogged this before but I've certainly spoken it before... If this cycle works, fabulous. If it doesn't, that really actually is fine. I am as eager to adopt as I am to be pregnant.

So when people say, this time, this is the one. Or this time it's going to work, I feel it. Or anything like that, I find myself saying: that's really nice that you think that but this time, I'm going to keep my head on the ground. This time, if it doesn't work, it doesn't matter.

Is it the new clinic that has changed my attitude so much? Is it the effects of the counselling and having my head more screwed on? Or is it a maturing attitude to IVF? Probably all three in combination. A different head sits on these same shoulders. Wishing on stars won't make it come true.

So Monday we email the clinic to formalise the dates. (Monday is the first day of my next batch of contraceptive pills.) Monday is the new beginning.

Spain preparations part 2

2010-09-30T18:35:00.004+01:00

So we're back from Spain, confirmed our decision to go for egg donation with the clinic, paid our deposit. And you will never guess what... We can start the next cycle NOW if we want. And crazier than crazy, WE (not the clinic) have delayed it.

A completely new situation for us but upcoming issues in relation to "Selma" (I've stopped calling her "mum" now after deciding in counselling that it wasn't comfortable or appropriate anymore and will use "Selma" in my blog instead - a reference to the the crazy sisters in the Simpsons, I'm just doing it in stages at the mo, not to her face although maybe that's only a matter of time)... sorry got sidetracked... She's taking my sister to court and I need to be a witness in November, supporting my sister.

So, so we don't have two stresses at the same time, we're heading over to Spain in December. So great thought to be able to CHOOSE and to PLAN. CHOOSE AND PLAN. Wow, two things we have definitely not been able to do before.

So now we need to get a couple of bits sorted for Spain - our blood groups, which (randomly or not), our doctor doesn't hold as standard. So we're off to give blood. I used to give blood quite regularly but stopped with the IVF seeming to be ever-present. And Mr_F needs to get a Karyotype test done, which might cost couple of hundred pounds. Ouch.

Anyway, bonuses about egg donation for me/us rather than full-blown IVF are: no more sneezes after the snifter, no more funny taste dripping down the back of my throat, no more needles, fewer drugs, no more carrying needles to parties, no asking "Selma" for bloods (which we'd need for Spain for the HD tests), no bloatiness, no eggs with HD, no sedation or egg extraction, no recovery from sedation or egg extraction, no OHSS, no Karyotype blood test for me, less time away from home during the procedures, fewer scans, less emotional craziness... None of these are things we considered when deciding to go with egg donation rather than PGD (we were only interested in the massively increased odds of success) but they are just nice and lovely added bonuses all the same, and we might as well enjoy them.

Live in the UK, going through PGD, fancy a chat with a nice bloke?

2010-09-22T21:01:00.003+01:00

Hi guys
Writing the blog sometimes I get asked to do things like interviews and what not. I always try to help as much as I can, trying to give as much back as I possibly can and trying to help all of us going through this rubbish not be alone. Anyway, so I got a request from a lovely bloke at the BBC and gave him a call. They're doing a documentary about PGD, and he's looking for people to chat to. Both people for the show and people to help him understand the background. I don't particularly want to be on the telly but we had a lovely chat about all things IVF and PGD. I nattered his head off for over an hour I think in the end! Anyway, if you fancy helping him out, live in the UK, going through PGD, the email I first received is below. You can contact him through this email: rob miller 22 @ hotmail . com

"We are making a documentary about pre-implantation genetic diagnosis which will explore the clinical, ethical and policy issues surrounding this potentially life-changing area of medicine, whilst telling the human stories of couples who are considering, hoping to acquire funding for or are actually in the process of receiving the treatment.

The documentary is being directed by Adam Wishart, who is perhaps best know for his award-winning filmThe Price of Life, which examined the work undertaken by N.I.C.E and followed the stories of patients whose lives are so profoundly affected by the Institute's decisions. For more information about Adam, as well as his other films and books, please see his website: http://www.adamwishart.info/2009/06/the-price-of-life.html

The PGD documentary has been commissioned through BBC Bristol and will be broadcast on BBC2 next year.

At present, we are looking to speak to couples who:

1) Are deciding whether to have PGD.

2) Have decided to go ahead with PGD and would like the NHS to fund the treatment or have been turned down for funding but are appealing against the decision.

3) Couples who are about to undergo and are currently undergoing PGD.

Any conversations will be held in the strictest confidence and talking to me would in no way obligate anyone to appear in the film.

Both Adam and I have a track-record of making films with vulnerable people in distressing circumstances and we will be treating the subject of this documentary and any potential contributors with the respect they deserve.

As discussed, I would be extremely grateful if you would circulate this email amongst your case workers who may know of couples who have a child with Huntington's or fear that they may pass the disease onto their children and may be at any of the stages of PGD outlined above.

Thanks once again for your help.

Kind regards,

Rob (Miller)

Associate Producer

Seismic shifts

2010-09-15T20:37:00.006+01:00

In some ways, I feel like a different person than the one who first sat down and started pouring her heart out to this blog. I never expected to be able to help so many people, I never expected to meet new friends and I certainly never expected the world to change as irreversibly as it has.

I once emphatically wrote on this blog that I would never abandon my mother, and yet I have now effectively walked away from our relationship.

I never expected that the IVF wouldn't work. I thought we'd be the ones to beat the statistics, not be drowned by them. And obviously, as with many other people, I never for a moment dreamed we might have fertility issues of our own to deal with on top of the HD.

We never thought about what would happen if it didn't work. We didn't have a plan b, pgd was it for us, it was the only option that we considered and now it has gone.

I never expected that I would end up so broken by the process and by my mother, or that I would end up in therapy. I certainly never expected that it could help as much as it has. I thought I was strong, that I could overcome anything, and now I don't even know what strong is, and don't particularly care whether I am strong or not.

I never knew jealousy as deeply as I do now and I was never as scared of hope as I have been in this past year.

I never expected that it would affect my relationship with Mr F as much as it has, negatively and positively. The process has forced us to delved deep into our hearts and into our relationship, and sometimes we haven't always liked what we found.

But then I have never had as many friends or as much support as I do now. I have never had a relationship so strong that it could withstand such pressures (outward and inward). I never had the strength before to stand up to my mother.

And with these seismic shifts weighing down our bags and our hearts, we made our way to Spain. We entered the new clinic, met new assistants (who were lovely) and new doctors (who were doctory nice), had the same old scans and tests but were faced with new advice. Egg donation is now the way forward.

London actually did do all they could for us clinically (which considering everything is reassuring in itself to know). And Spain said if they were to repeat a PGD cycle for us would do exactly the same as before. And probably the results would be exactly the same as before. He gave us a 25-30% chance of success IF we could produce two health good embryos at the end of our cycle - something we haven't come close to in the past two cycles. In comparison, egg donation there has a success rate of up to 60%.

With this probably being our last IVF shot before we try for adoption, egg donation is the winning option. How could we choose anything else?

Book reviews

2010-09-09T10:38:00.001+01:00

Sometimes, time seems to slip away and I don’t quite manage to finish ideas for posts… This year, I have read three books that have really helped me to understand the world a little better. I was going to do individual book reviews but I just haven’t managed it. So I am going to blast it in one fell swoop. I hope you will find them useful. I present them in the order I read them.

Book no. 1: Bad Science by Dr Ben Goldacre.

When I first got my test results, I was desperate for answers and solutions. Trying supplements, taking green tea, avoiding milk, anything that was vaguely hinted might help, I would try to do. The doctors never recommended anything in particular and seemed quite taken aback if I asked about foods that could help. So I did my own research on the internet. But the internet in its own way is a dangerous thing. Do random people online really know how to interpret scientific studies? Are the studies that they are quoting good quality? Could their results just be an anomaly? A colleague recommended this book after I started doing acupuncture and reflexology and searching out anything and everything that might boost our chances of fertility success. But there is no quick fix to anything, as this book has shown me. I needed and still do need counselling, not a needle stuck in my head for 15 minutes. I need a general healthy lifestyle (exercise, reduced alcohol intake, no smoking, balanced diet), not a supposedly cure-all food item. This book helped me to see things differently, and I really cannot recommend it highly enough.

Book no 2: Navigating the Land of IF by Melissa Ford

Another excellent book. The land of IF is the island of infertility, and I am an Iffer. People end up on the island for many, many different reasons but we are all seeking one thing: to get back to the mainland. And people choose different routes to do that such as natural conception, IVF, adoption, even remaining child-free. The book explains all the different aspects of the island, the different reasons for being there, the different ways of getting off. More than anything it brings the inhabitants together. It gives us reasons not to squabble among ourselves. It gives us the right words to say both in our clinics and in those awful moments with non-Iffers. It gives us the knowledge that we are not alone and that what we are feeling is not insane. If you are struggling on the land of IF, please read it.

Book no 3: An Adoption Diary by Maria James

God did this book make me cry. It’s a diary of a couple who adopted a little son. And the ups and downs they go through to get there. I didn’t read it in a good moment, I must be honest. I read it as the IVF failed and it made me feel so very tired that I had no energy for the long battle to adopt. Another rollercoaster ride. But of course I had no energy, we had only just lost our embryo and I was still grieving. Read it in a better moment and it’s a real eye-opener to the experiences of adoption and a beautiful story of a couple who overcome the land of IF to become parents.

Spain preparations

2010-09-01T20:22:00.002+01:00

My first post on our third cycle... who'd have thought we'd be here now after so much time has passed?

So, I have read most of the guide book, booked our hotel (got a good last minute deal on a 5 star hotel), checked out some good locations for local eateries (am a bit of a foodie and am very excited about my first taste of proper spanish food), dug out our passports, sent all the documentation across and even had our syphilis tests. I reckon that's on everyone's to do lists before going abroad - don't forget your toothbrush or your syphilis test.

So we're pretty much sorted now. Just need to pick up our syphilis results this week and pack our bags.
I almost wish there was something else that needed doing! I am a bit crazy like that though, I do like having things to do.

Two weeks to go.

How am I feeling about the prospect of a third cycle, a new clinic? Everything and nothing. Excited and anxious about what lies ahead. Tired and numb from the journey so far. Scared, so scared of... everything really. Nervous and wary of the decisions that we will need to make. Torn between every choice there is. In some ways still grieving the loss of our cycles. Trying to control the inevitable envy when I see people stroke their swollen pregnant tummies, when I accidentally walk through a maternity department wondering if it will ever be us, when I see babies in their pushchairs. Strangely relieved when they start screaming...

Hmmm, it's all a little bit overwhelming when I start to think about it. I think I'll go and cook dinner instead. I found a monkfish tail in the freezer before and am going to attempt something wagamama-esque, which might be tricky as we're missing half the ingredients... Wish me luck!

Coincidence?

2010-08-26T17:08:00.004+01:00

So, after our our first cycle failed, we asked the consultant what could be done next time to improve our chances of success. She said nothing, to try the same things again and hope for a better outcome.

After our second cycle failed, we asked the embryologist what could be done to improve our chances, she said nothing. This was our lot. We could carry on and one day we might get lucky or we might not.

We asked the consultant (a different consultant) what could be done to improve our chances, he said nothing. Eggs were eggs. One day we might get lucky.

We get copies of our medical notes, tell them we're leaving as we need to find a new approach and all of sudden... A phone call out of the blue... Actually, they could change our drugs. And they could monitor me more closely, do scans and blood tests everyday, adjust the dosages accordingly. That could help.

I wish more than anything they'd been more proactive about our second cycle, not leaving it to fate again. I wish more than anything we'd had the knowledge and confidence to assertively insist for change in our second cycle and not just follow what they said. Maybe we'd have found a different outcome...

Oh hindsight, you are a truly wonderful thing. But you are a luxury that we cannot afford.

Goodbye London, buenos días España

2010-08-18T12:53:00.007+01:00

We had a our final (telephone) appointment with London yesterday, to discuss and reflect on the cycle. It ended up being yet another reason to move on from our clinic. The doctor blatantly hadn't properly read our notes before he called, nor had he spoken with the embryologist. He had seen my age, seen our high numbers of eggs produced, seen that our five biopsied eggs had resulted in one HD-free transferable embryo and proceeded to tell us how well the cycle had gone, how much hope we had for the next cycle, how our drop from five to one after the test results was unlucky but not unheard of, how good our eggs were... Uh? Sorry? That was not what the embryologist said. It took a while, him stalling for time, some flicking through our notes to admit that oh yeah, actually our embryos weren't that good. I was fuming. How can you call someone in a pre-arranged appointemnt to reflect on the cycle, make decisions for the future and not read their notes properly beforehand? Are you joking me?

The phone didn't go particularly well after that. I just ended up arguing with him. He kept telling us about the chances of other couples our age, with our number of eggs, with genes such as HD were pretty good. I kept pointing out that our situation was completely different if we had low quality eggs. Honestly, thank god I had already spoken with the embryologist so I knew what I was talking about even if he didn't. He eventually admitted that our chances of succes were lower than other couples and gave us about 15% chance of success, which he thought was good. He said some couples go through 8 or 9 cycles and make it, they have a baby. Sorry? 15% is good? What kind of exams did you take at school? And oh my god, 8 or 9 cycles is impossible for us a) emotionally b) financially. You're talking a minimum of £60,000. We don't have that kind of money and the chances of us getting funding for a third cycle would be pretty much impossible.

He said they were the best clinic in England, and one of the best in Europe, that we wouldn't get any better advice or odds of success (so untrue it's untrue). That there was nothing anyone could do to improve my egg quality (probably true). I mentioned egg donation and he wasn't particularly supportive, saying how difficult it was, saying that the majority of couples prefer their child to be genetically related to them... Not quite sure what his point was here as we've already proved we're not the majority of couples.

I mentioned that we had found our cycles with them a stressful experience and that we were looking for a clinic with a better set-up. I mentioned our four month wait to get scheduled for our cycle from November last year to March this year. Do you know what he said? That was because of Christmas. What?! A one week holiday period in December meant we couldn't get scheduled for 4 months?!

So obviously, I was in tears by the end of the phone call. I still can't believe he didn't read our notes. But he did make walking away from London oh so easy. In all likelihood, we're having one more shot at IVF before we try to adopt. And with this one shot, it's time to try somewhere new, with new ideas and more consideration.

I read Mel Ford's "Navigating the Land of IF" at the end of our cycle, and do you know what she says?

Wait a sec... I want to get this right... [reach over sleeping Mr F to get the book]

You deserve to be treated with respect... It's difficult emotionally to leave a clinic..., but sometimes it is the best decision a person can make if the clinic or RE is causing stress on top of the normal anxiety fertility treatments involve.

Not necessarily as easy to do in the UK, compared with the US. But now, as we leave behind our funded treatment, we can indeed walk away from our clinic. And say goodbye London...

...Buenos días España.

I emailed Spain to set up our first appointment. Do you know what they said?

"When would you like to come?"

Uh? I don't understand. Aren't you supposed to dodge the question for months? Then think about it, then hide some more. Then say OK then, but you'll have to wait. And then, after more agonising and only when I have past the brink of collapse do you let me have a date. Not a date that we discuss, obviously, just a date that we have to make be ok.

"When would we like to come?"

Wow! I am just not used to the consideration. I told Mr F, I said, do you know what they said? They said "When would we like to come?" Mr F looked as amazed as I was, as I still am.

So we have booked our first appointment for mid-september. And booked our flights as well. And filled in their initial appointment form. We need to send across photocopies of our passports, our medical notes, get a syphilis test done and that should be it. And find a nice hotel, and a good tapas bar. We're only there for one night for this first appointment but we might as well make the most of it. Anyone have any top tips for Barcelona?

It's a new era of IVF for us. I really hope it results in a new kind of result.

My 200th post

2010-08-02T13:40:00.000+01:00

I write this post in memory of our lost 37 possibilities, including our two embies who gave us such great hope for such a brief amount of time. We loved you and lost you, but we will not forget you.

I also write this post in hope for the future, hope that our possibilities of the future will bear fruit.

And so I dedicate my 200th post to all possibilities of hope in the past, present and future, yours dear reader and mine.

Moving on

2010-07-30T11:47:00.001+01:00

This week definitely has not been easy by any stretch of the imagination. But neither has it been as awful as I feared. I worried that I would slip back to where I was before, slip back to being on brink of really, properly not coping. Was I close to a breakdown last year? I don’t know. There were times when I literally did not know how or why I should carry on. And I was too scared to openly admit how bad things were.

Last week, moving towards the test, I was scared and worried that it wouldn’t work but I was absolutely petrified that I would go back to where I was. I tried to bury my fears but I wasn’t always successful!

This week has not been like that. OK, the test results were not great, I struggled when we had our phone call from the embryologist, a number of mum issues have arisen (without even knowing, she has such timing!) that I will talk about at a later date, work miscalculated my pay so I am £400 down this month (ouch!), and the cat got man flu. Poor thing. He’s feeling better now though.

But I am still here. I’m still me. I’m OK. I am very much involved in our plan making for our future family. And we are pushing ahead with plans for our future family. Even to the extent of being excited about our future family. Because it’s going to happen. Maybe we won’t be a conventional or a normal family, maybe I won’t ever be properly pregnant, but really? Who cares? I never liked the idea of having swollen ankles anyway ; )

So plans for our next steps:

Plan B: Expensive, amazingly successful clinic in Spain. We met with them in February and the second we get our notes through from London (which I have requested and sent through the appropriate letter and cheque to obtain), they will be off to Spain and our appointment will be booked. I have even bought a guidebook. Just for fun. They have more tests to run, they have no waiting list and they do both PGD and egg donation. Plan B is one cycle with them, following their advice on what our next steps should be.

Plan C: Adoption. I feel mean calling this Plan C because if Plan C properly goes into action, it will be brilliant. No less brilliant than Plan A or Plan B. We went to an adoption information evening last night and both feel really excited if this might be the way for us. I was worried (so worried, I was literally shaking) that they might discriminate against us because of my HD-gene status but the social worker we spoke with said it wasn’t impossible. I am still young, my mum and grandma had relatively late onset, treatments are coming out all the time… And honestly, who can guarantee that they will have good health for the next 20 years? So I have bought a book (“An Adoption Diary”) for more information and if we want to go down that route, we just have to call them and they will set up the initial visit. Everyone seemed lovely.

Poor egg quality confirmed

2010-07-27T17:12:00.003+01:00

The embryologist called before to chat through the cycle and answer a couple of questions we had. Our second cycle has pretty much confirmed it, my eggs are not the best. Quantity, apparently, I can do. In spades. Quality. I think that's where my ovaries are getting a little confused. Again our numbers dropped off in greater quantities and earlier than they should have done. If our eggs are able to be fertilised, they don't develop right or they develop too slowly or they have a bash (bless them for trying) and then it's all just a bit difficult for them.

I don't know why this has upset me as much as it has. I knew it was coming. I just really hoped it would be ok somehow.

There's nothing else the London clinic can do. They could run us through another cycle, but the results would be the same and it would take more than luck to give us a better result. Even without HD in the equation.

I was doing ok this morning, you know. Focusing on the future, our next steps, happy to be looking at other clinics, happy to be looking into adoption. Finding a different route to a family. But now I am crying again, and wishing with my whole being things could be different. Wanting something badly, doing everything they say to the letter and more, wishing on shooting stars, following a healthy lifestyle, trying to stay upbeat, it doesn't fix it, it doesn't make things ok. What if that's it for us?

So how was your weekend?

2010-07-26T16:52:00.006+01:00

The usual office chitchat surrounds you when you walk in on a Monday morning. Yes, it was ok, a typical office answer when you know they actually don't really want to know and aren't really listening. I do it to other people, they do it to me. Who really wants to get into the nitty-gritty of a colleague's life?

If they had caught me at the wrong moment this Monday morning, I may actually have spewed forth an honest answer. Luckily, for me and for them, they didn't.

So how was our weekend? Eventful and uneventful. Brilliant and horrendous. Wish it had never arrived and so glad that it has gone. But now I am lost.

FRIDAY EVENING

Just about got over my outburst, I was desperate to do the test a day early. I couldn't wait any longer. But getting home was a monumental relief in itself and the pressure eased, no longer having to pretend I was normal or that things were normal. We just watched TV and made plans for saturday, plans that would distract us until Sunday (the day of the test).

SATURDAY

Saturday morning. Counselling appointment. Very useful the day before the test. Allowing me to tackle what I was really scared of (my reaction to the test rather than the results themselves necessarily, and being reassured that things would be different this time because I have support in place). Also, it was a useful reminder of the need to make plans for after the test. What would we do if it was negative? Enact Plans B and C (more to follow in another post). What would we do if it was positive? A tricker one for me this, as I have never had a positive test and struggled to envisage exactly what we would do. But I got home, and me and Mr F cemented plans for both paths.

Saturday afternoon and evening. It was raining so we went to see an art exhibition in town. Then went out to dinner at a thai restaurant that I'd been recommended (the food was divine but we did need to be rolled out of the restaurant we'd eaten so much!). Then the cinema. A film without babies, obviously. Then home, I was knackered and slept almost soundly. It was a really, really lovely day and plenty to keep us occupied without thinking too much about what lay ahead - thought-provoking art, scrumptious food and someone else's story.

SUNDAY

The test. What can I say? It looked like a negative when we first did it, it was definitely negative when we went back after 10 minutes and it was still negative when I hoiked it back out of the bathroom bin several hours later.

I could have sat staring at things for an infinity. Any moment left alone, I would just sit and stair. My mind completely empty, my completely full. Knowing I had lots of things I could do to focus my mind, not knowing how to stand up to do them. Wanting my period to come so much it but knowing that it still wasn't there. Feeling the cramps and knowing that they were definitely period pains.

Sitting down and standing up, wandering around the house, stopping to stare out of the window, sitting down, watching out of the window, looking at other people's windows, seeing their lives, stroking the cat, holding my stomach, wishing... wishing what? Just wishing. Sat there, not able to stand up, not able to move. No motivation. Motivation to do what? I don't know.

A second failed cycle and I am lost.

Our one has gone.

2010-07-26T08:38:00.003+01:00

I've thought about this post quite a few times since we did the test yesterday morning. A million different words have spewed from my mind in readiness. But my mind is too much of a jumble at the moment to let them out. I don't really know what I want to say and I don't really think there are any words or sentences that could express how I am feeling.

Ef'ing hell

2010-07-23T11:22:00.003+01:00

Just snapped at one of my staff. I apologised. I really would like to explain the pressure I am under. That this weekend could mean everything to us, every dream, every hope (although obviously there would still be a heck of a long way to go). But it could also be another failure, another devastation.

A couple of people do know at work. Close friends and my line manager (now strictly speaking, my ex line manager under the re-structure). But the politics of our place, it's just not possible to be open about things like this. I just can't risk it.

We are balancing on a cliff edge, and there are moments when I am struggling to deal with this, knowing what I did not know last time, knowing how horrific it is when it fails, how hard it is to pul yourself back again.

A couple of days to go before the test and...

2010-07-23T08:18:00.003+01:00

Physically I feel fine again (barely any cramping or nausea), emotionally... we're both trying to stay calm.

It's quite surreal actually. Walking into a weekend where we are either going to be totally devastated or ecstatic. In a way, I don't know what to feel right now.

I am, however, seeing my counsellor tomorrow morning. And this time, we do have a plan b and even a plan c.

Maybe it will be ok?

Still nauseous...

2010-07-22T08:23:00.002+01:00

I felt nauseous for most of yesterday, and this morning I am still feeling it. The cramps and sore boobs seem to have subsided for the most part but maybe this is just because I am distracted by the nausea...?

A wave of nausea

2010-07-21T08:29:00.005+01:00

I opened the fridge door this morning, and I swear I could smell everything inside it, everything. The stink hit me like some kind of cannon ball straight to the stomach and I really truly thought I was going to be sick. I reached in for the yoghurt, closed the fridge door and I thought I could smell it before I even opened the tub. And I really felt like I was holding back the vomit. Dreading feeding the cats, I braced myself as I opened the tin, but it was fine.

I remember last time, I did get a little bit hypersensitive and nauseous even to smells - once to a cigarette and another time maybe to an apple? But it wasn't like this, I still feel a bit nauseous now, an hour and a half later.

The cramps were ongoing for most of yesterday but I left work on time (woohoo!), and went home to curl up on the sofa with a hot water bottle. Lovely.

Mr F was trying to keep my feet on the ground this morning. He's scared I will build myself/ourselves up too much that we might get a positive test. But I really feel that we need to believe right now, otherwise the stress and the panic are going to come steamrollering through... And obviously that in itself could signal the end.

If I think about it, oh my goodness, am I scared. But I need to believe, just for a little while, that it could be possible.

Maybe it's an early sign?

2010-07-20T09:26:00.001+01:00

Please, please be an early sign.

http://community.homeandhealthtv.co.uk/eve/forums/a/tpc/f/556101191/m/601104991

Oh God I think my period is coming

2010-07-20T09:17:00.001+01:00

I think my stomach is cramping.

Please God, no.

Implanted and resting

2010-07-17T11:44:00.004+01:00

So the implant went ahead on Wednesday.

Last year, I remember getting to this stage being so immensely overjoyed to have one left (only two survived the biopsy) and then getting down to London to hear that our one was pretty much a duff. Our hopes chopped down in an instant, and then trying to raise ourselves for the sake of our one chance, believing that maybe it could happen. I couldn't understand why they hadn't told us before, why they'd let our hopes rise so far, unchecked. Why they'd held back this obviously vital piece of information.

This year, when the biopsy results came in and we only had one surviving, my very next question was about quality. Because I had asked the question, this time they actually explained what had happened last year in that they don't look at the embryos again after the biopsy until the implantation because they don't want to disturb them. Well now, that makes sense. You wonder why they don't tell you that as a matter of course.

So we arrived on Wednesday for the implantation. And both were anxious to hear about the quality. My whole being felt like it was ready to explode if they said this one was poor quality, like last time. I couldn't bear for last year to be repeated.

Ours wasn't quite a blastocyst they said. It wasn't textbook. But it was OK. What does that mean, I wanted to know. Will it develop?

I burst into tears. I couldn't cope, not again. Not another rubbish egg. From 19 down to nothing in the blink of an eye, again. But they chatted us through it, and whilst our egg was not at that point a blastocyst, it was potentially only hours off being one. And the cells were clustering in preparation for being a blastocyst. So it had every indication of being ok, much better than last year.

So I blew my nose, hugged my husband, pulled myself together, got on the bed, spread my legs and we were away. We watched on the scanner as they implanted it in inside me, a couple of rebellious tears eking out from the sides of my eyes.

Our doctor didn't really give us any advice on what to do next, how to maximise our chances. Just get on with our lives. Last time we did that, and I think we did too much too soon. This time, I've been resting. And I found some info online which gave a few pointers as well. Click here.

Well-meaning friends have said to me they'll keep their fingers crossed that the next couple of weeks will pass quickly. Please don't. Honestly, I am happy in my little bubble of almost pregnancy. I don't want it to end.

One

2010-07-13T18:00:00.004+01:00

One egg left. The other four have HD.

I won't lie, I was devastated when the call came in and I can still feel the tears (now dry) stuck fast on my cheeks. I was trying to prepare myself for the worst, for none, but unspoken I was hoping for two. We both were.

Still if it's a good one, if it's the one that will be..., it doesn't matter.

... ...

2010-07-13T14:54:00.001+01:00

Tick tock goes the clock.

...

2010-07-13T09:32:00.003+01:00

The waiting is now officially doing my head in. Barely slept last night, and struggling to concentrate on anything. And I'm knackered. God knows how hubbie is actually managing to work. God knows how I thought I would ever be able to do any work this time in the process last year. I can't believe I went in!

Pains in my ovaries and pain going to the loo first thing in the morning seem to be easing but now my boobs are hurting. Blinking cyclogest. They did that last year whilst I was on it. It definitely can't be pregnancy seeing as there's nothing inside me, so at least I can't get confused this year.

Plans for today? Trying not to climb the walls? Maybe a bit more wii, maybe go out on the bike for half an hour or so. I am desperate for some exercise!

5 surviving

2010-07-12T16:57:00.002+01:00

The embryologist called and we have five. Five who were big enough, five who survived the trauma of the biopsy, five left.

Irrationally, I had hoped for more and a few tears have been shed over those lost. But five is good, five is fantastic, five is three more than last time.

We get the biopsy results tomorrow.

So where are we now?

2010-07-12T12:08:00.004+01:00

FRIDAY

The day of the egg retrieval. A massive day for me, physically and emotionally. The day of the egg retrieval from our last cycle has been one that I have struggled to move on from. All the hope and excitement of our 18 eggs swept away so quickly.

So we were up early again, up with the larks. Mr F kindly did the honours with the rectal pessary - I just could not bring myself to do it! And off we trotted down to the big smoke. Me famished and dying of thirst (in preparation for the sedation). There was quite a bit of waiting around but I felt much calmer than last year. Mr F went off to do his deposit, I chatted with the consultant. Then it was my turn for the retrieval, and I could feel the panic rising inside me. I was so scared, scared of the process, scared of the outcome. But I tried to hard to suspend those feelings and just do what they told me. And soon enough I was sedated, and soon enough, I was waking up, being wheeled back into the recovery room and Mr F.

After a little while, after water and hot chocolate and biscuits, the consultant came back to let us know how things had gone. 19 eggs, he said. Well done. 19, one more than last time but what did that mean if they were all rubbish?

We headed home, stifling on the train. I thought I was going to melt! Last year, we were so excited, we texted everyone, rang everyone to tell them the news of our 18. This year, the texts/calls were very limited. The egg retrieval number was not what mattered, it meant nothing and I did not want anyone to focus on it, especially not me. We just let people know that I was doing OK, and that was that, I had to focus on my recovery.

Which has, in some ways, been a fair amount of effort on my part! Because we produced so many eggs, we were at risk of OHSS (ovarian hyperstimulation syndrome), so the consultant (and nurse before we left) chatted us through the symptoms and the need to drink at least three litres of water a day. Honestly, I do not remember them saying anything about this last year and I do think that both this year, and last year, I am touching on the edges of it - both times having problems urinating. This year, following the advice to drink A LOT of water, it is just bad in the mornings (when I haven't had a drink for 8 hours or more) and then once I start pumping the fluids back through, it eases considerably.

SATURDAY

Wide-awake early in the morning, praying for our 19. Praying and hoping and wishing and dreaming that we would get a good number. We were hoping for 4 - on the scans before the egg retrieval we'd had four biggies and then a load of littlies. Surely, the big ones would make it through, and that would be one more than last year who had made it beyond fertilisation. Mr F said anywhere between 5 and 10 would be amazing. We didn't dare hope for any more.

The phone call came, Mr F and I sharing the phone between our ears, family standing in the doorway not daring to breathe or speak. Together, we steeled ourselves for the worst. But the embryologist said she had good news. We've got our four, I thought. Please god, we've got our 4. Of our 19, 4 eggs were not mature enough for fertilisation. OK, OK, where are our four? Five more had not fertilised. Leaving us with 10. 10 fertilised eggs! 10!

10!

10!

10!

I think we all cried, at the relief, at the promise, at the possibilities...

And the hope crept back in. 10 is more than three times more than our number at this stage last year. 10 fertilised might mean we were just unlucky last time, not that there are other underlying issues in my fertility. 10 could give us a chance for our own child. But then with the hope, comes the panic because they could still disappear in the blink of an eye, leaving us with nothing again. And there is still such a long way to go.

SATURDAY AND SUNDAY

We spent the rest of Saturday and Sunday, just trying to be distracted. Seeing friends, seeing family, resting, drinking water (obviously!), watching films, reading books, watching the football, remembering to take the cyclogest. And you know, I do think we are much calmer this time around. I feel more prepared, more able to manage. It feels so very different from the blind optimism and panic of last year.

MONDAY, TODAY

So here we are, Monday. Trying to chill, trying to distract ourselves, me still recovering. I think I am getting there - going to the loo was easier this morning than it has been by far, the ache around my ovaries is easing. Although when I sneezed this morning, my ovaries screamed in pain. Maybe I won't do that again...! They did say to take some paracetamol if it was bad but the aches have been intermittent and only really when I move, and I want to make sure I take it easy rather than being dosed up and thinking I am OK, when I am not. I might try some yoga this afternoon, just to have a bit of a stretch.

Today we find out how many of our ten survive the biopsy. Another step closer but also another indicator of the quality of our eggs. Last year, we lost one at this stage. I am calm but I am also wondering what today will hold.

Correcting a mistake

2010-07-12T11:52:00.005+01:00

I have a small confession to make. Last year, when we were going through IVF, I panicked. To write everything that we were going through up online for everyone and anyone to see suddenly worried me. I was worried that those anyones could suddenly be people I know who I might or might not want reading it, and might realise who I was. The numbers of eggs retrieved felt too personal, too much to share, too identifiable.

18 to 3 in 24 hours.

So I changed it, 11 to 3. That felt much more like it could be anyone writing this blog, anyone at all. What I failed to realise that I am probably more identifiable from the essence of this blog than any one particular fact or number, and that I can never get away from. What I also failed to realise was that those numbers would only ever be memorable to me and Mr F. Because they cut to the core of my heart, they were what made it so difficult, they were what might determine our future path (if it was that our egg quality was so low, we could never have children that were genetically mine).

This year, I want to write the correct numbers on the blog but to do that, I need to right that wrong.

Quality not quantity

2010-07-08T15:29:00.004+01:00

Everybody chant it with me. Quality not quantity, quality not quantity.

I'm having a day of chilling. We're down staying with friends/family for the procedures. Hubbie, bless him, is working and I, having taken the whole time as leave this time, am pratting around. I got up at 11 (very unlike me but honest to god, I was shattered), leisurely read through a report for a friend, had lunch in the garden, checked my emails... might do some wii yoga later, maybe go for a walk... Might just prat around on facebook or read BBC news, whatever really.

My cold is dying down. I do have a pile of tissues next to me, but they are not attached to my hand. Definite progress. And I can breathe again, almost. Lovely.

Had a scan yesterday. First time back in the London clinic since our implantation last year, which was a bit weird (we had our first scan for this cycle locally). Strange to be there again, sat in the same chairs, seeing the same nurses for the same procedures but everything being so different inside us. I am a little lopsided this time. My right ovary has far fewer follicles at the ready than my left. Left is bursting with follicles. This will probably explain my left side feeling a good bit more tender, I reckon. But the bloatyness overall I think is different from last time. I remember being desperate for the extraction last year, I was that uncomfortable but this time, I am fine really. Nothing at all to complain about really. I have been watching myself all the time, waiting for the soreness to hit me full on but it hasn't really. I guess every cycle is different.

A strange mix of emotions yesterday (and today). Fear, obviously. Massive surges of Hope, trying her hardest to trample over everything else. (Bitch.) Followed by crippling fear, clambering back through, not wanting to miss out on the emotional turmoil in my heart. Followed by numbness. Followed by... I don't know what.

Anyway, everything is looking good, and we're on for the extraction tomorrow. Did my last injection and sniff last night (no drugs today - yay!), helped Mr F get rid of stale sperm, helped him prepare for his task tomorrow with some photos... Last time, I wanted to be there for his sample getting but I was gowned and ready for the op before they came to show him the room. And then he was gone for ages because of the pressure. So we thought photos might help with both.

So, I want your fingers crossed and touching wood. I want your prayers and best wishes. I want everyone chanting together: quality not quantity, quality not quantity, quality not quantity... Maybe this time we can do it. Oh god, here comes the fear...

2010-07-05T09:33:00.002+01:00

Not really sure what to call this post, probably because I am not really sure how I am feeling. I think I might be a little bloated but I am not sure. I am probably just thinking about it too much. I am definitely either coming down with something or am a little run down. I am tiring easily, my head and throat do not feel right and there's been a couple of times this weekend, where I've felt quite nauseous. So I got the bus into work today rather than walk, which I normally hate on such a beautiful day but what can you do.

Two more days of work though and then that's it. We're off back to stay with family for the duration of the treatment, nipping in and out of London. Mr F is going to work from there. I am going to potter about. I might do a few bits of low-key writing for work just to try to keep occupied but there's no pressure as I will be on leave.

Next scan is on Wednesday.

My i-defence

2010-06-30T12:09:00.002+01:00

One week to go until we head down to London and I/we have been doing some vital preparatory work.

1) Music. I have two lines of defence set up on my ipod. The first is a playlist of songs that you can’t help but tap your feet to, songs that demand attention and demand a smile, no matter what my mood. The second line of defence is for emergencies. A second playlist, much shorter, with songs selected that are about fighting for what we need and overcoming all odds. Mary J Blige’s No More Drama features prominently but there are others too.

2) Drawing a barrier between them and us. Something I have been working on with my counsellor/therapist. Placing a barrier between Mr F and myself, and not letting any comments or nastiness or abuse from anyone affect me. Discussions with my counsellor suggest that my sometimes over-reactions to other people’s concerns might be a behaviour developed as a child when coping with mum. And I need to unlearn this. So we have assigned me an imaginary guardian, a Scooby-doo style dog (we’ll call him Dog F), who has a vast array of weaponry at his disposal to protect me from both memories of the past and badness in the future. It’s quite apt really as mum used to threaten to kill my dog, so I am enjoying using Dog F to squash her or indeed beat her into submission (in my head, obviously). It was very annoying to learn and understand her affects on my behaviour, even after not really speaking with her for so long. So I am determined to beat this. I can’t let her manipulate me when she doesn’t even realise she’s doing it!

3) Deep breathing exercises. Again, something taught to me by my counsellor. For use just before a phone call or entering a highly charged situation. Or indeed whilst in the situation itself.

4) Tapping techniques called emotional freedom techniques (again taught to me by my counsellor). Handy for using in the toilet or at home, or in the car...

5) Looking after myself. I am going to lunch today. I am. There’ll be no working through. Ha!

6) Remembering that I am allowed to cry and be upset. I burst into tears on the street last week over something and nothing. And again in the car on Monday... Luckily, it’s the summer and the humongous lenses on my shades can cover up all kinds of red eye problems. Plug the i-defence in and in a few minutes, I am OK again. It’s OK to cry.

7) Heat pads. I picked some up yesterday and I'm hoping they might ease the bloatiness when it properly hits. Worth a shot!

8) Lastly but most importantly, Mr F. Always ready to give me a hug, tell me a joke and make me smile.

And with these tools at my side, I am ready for battle. I think.

Appointments and injections

2010-06-28T18:12:00.002+01:00

First scan today and my gonal-f injections start tonight. All went well, it was a little bit uncomfortable when she put the scanner in as apparently my ovaries are far out to the sides but it was over soon enough.

Injections tonight and feel a little bit wary again as it's been so long! But I am sure it will be fine once I get the hang of it again.

Had my counselling appointment today as well, which was good timing really as I was a good bit wobbly both due to mood swings of the drugs and the stress of the impending hospital appointments etc. Taking comments and other people's narks too much to heart and need to focus on and protect me a bit more. I am the most important right now, sod them.

Also spent some time unearthing and addressing mother issues. I don't even speak to her and her actions from the past (my childhood) still affect my behaviour today. I must not let her win. I must move on from this, and not be so easily broken by other people's comments.

I am a bell-jar, no one else can touch me. Well, we can but hope!

Mood swings? Me?

2010-06-24T09:19:00.004+01:00

For the most part, I am actually absolutely fine now. Just going about my normal day to day life, being me, doing me-type things, making me-type jokes. I still have twinges/discomfort from my stomach but it is not as bad as it was, and it is completely my own fault today if I have forgotten this and worn a waist cynching belt that is only going to make things worse!

But if I get stressed or annoyed or angry, it's like there's a fire burning inside me, a bomb waiting to go off, ready to reach out and knock over anyone in my way, whoever they are.

And with the next stage of drugs only days away (when the stimulation drugs start), my anxiety is increasing. I will be back on the injections for these and last time, both the mood swings and bloatiness were worse than they are now on the nasal sprays.

Angela meet Hope

2010-06-16T11:02:00.000+01:00

“Actually, we’ve met before. We used to know each really well but lost touch last year.”

“How’ve you been? It’s been so long! I have missed you so much!” Hope bursts out, beaming from ear to ear, so glad to be reunited with her friend.

“You hurt me Hope. You hurt me badly.”

“I am so sorry Angela, I never meant…”

“What? I trusted you. I listened to you. I believed in you and then when everything went wrong – where were you? You left me. Alone. I couldn’t cope - I nearly cracked. How was I supposed to respond? Like it didn’t matter?!” Angela moves away, forcing the tears back from her eyes, unable to bear the memories of the past. She can’t look at Hope, can’t bear the optimism in her eyes. She knew it was a mistake to come today.

But Hope moves quickly. Reaches out. And takes her hand.

“I had to go,” Hope says. “I couldn’t bear to see you in so much pain. You needed to grieve before you could see me again. You weren’t ready before.”

“And now? You come back just like that, like it’s OK again.”

“You need to look forward again. Not to the end of your nose but all the way down the street. Look and you will see whatever you want to see. But you need to accept the street is bendy and full of potholes. There is no easy way to get there. But at the end of the road, right down there, right at the end, if you look really hard, really squint, you can see your future and you can see your happiness. You can see your child. It will happen but you’ve got to believe it again.”

I saw my counsellor last night and she said I had to learn to hope again. Not to necessarily concentrate on this next IVF but to look beyond it again. To remember that we will have a child one way or another and that this is part of our route there. I have kept Hope bundled up that much, locked away, struggling to deal with its optimism, I think I am forgetting that we will reach our long-term goal.

So I thought I would re-introduce myself to Hope.