Thalia's fertility journey

Update #1

Someone asked/suggested that I at least post updates here of where I am so here goes.

Meeting with Dr Candour today, on day 3 of my cycle. Got the Zoladex injection and a booking form for a frozen cycle, which we will probably start a month from now, all being ok with the ovaries. Scan on 17 November to confirm if we can start the frozen cycle, which will be a medicated one (non-medicated are apparently v hard to get right due to randomness of when ppl ovulate).

Thanks again for lots of lovely comments on the last post.

Play nice

Guys, I'm going to do what Tertia does when there is a big barney on her blog. I expect you to treat all persons who might be reading this with respect. Let me be clear. I like and respect my doctors tremendously - all of them. Yes, I am angry about what's happened in the last week, but you can be angry with people you care about, and that's where I am (and no, I'm not just writing that). Please remember that they are people too, and may well be reading this. I don't want them to feel worse than they may already feel. I'm sorry that my last post was so drama-queeny that it's set some of you off. Please don't. It's ok to write that you're sad that I've stopped posting here, and that you are angry about it, but it's not ok to let rip at the doctors. I totally appreciate the support, but it's also making me feel horrible as I contemplate that I've led you to feel that way and it's not fair, you're only getting one side of the story. You don't know them, and none of us have a really good understanding of what it's like to walk in their shoes, or what caused Dr Candour to raise the issue with me on Friday.

I've tried to be fair in what I've written over the last week. I'm sure it's coloured by how upset I was, but I do hope that I've been clear that there is an issue both ways here. I wrote about stuff in a public space, I got found out. Yes, I had kept it all anonymous, but then I made the mistake of posting somewhere which compromised that anonymity. And quite understandably, my doctors took the initiative to respond to that. Come on, have you all resisted the opportunity to read that file on your boss's desk? Or to flick through your sister's diary? And those are more private than this blog was - anonymity and privacy are not the same thing. Let those of us who are without sin cast the first stone....I think the only person so far here who could do so is my husband, who has consistently not read this despite knowing about it and me having left posts up on the screen a few times when he's been using my comptuer.

Yes, I think Dr Candour could have done something differently on Friday, but he didn't, and it doesn't mean he's a bad person for not having done so. And who am I to tell him now to behave? He was doing a totally justifiable thing in trying to protect his staff. I might do the same thing if a customer was upsetting my team.

OK? I am at fault here too. And so please please don't let me play the matyr. And please be respectful of the others involved here. They don't get a voice on this blog, so let's respect that and be grown-ups.

A one-sided negotiation

I've obsessed about it. I've written endless letters to Dr Candour and Dr Condescending about it. I've written lots of posts about it, but in the end I cannot post or send them. It's all too difficult. I cannot bear the idea of having upset the doctors, at the same time as I am angry at them for having disrupted this seemingly wonderful, supportive, safe space.

I do understand why what I wrote upset people, I am able to empathise with what it's like to read snarky stuff about yourself. I had the experience of being handed a reference about me during an interview, and being asked to explain why it was so negative. It's shocking, and it sucks, and it was very hard to recover that relationship subsequently (although I didn't raise it with the reviewer - I was 21 at the time and would not have known where to begin). But after the initial shock had faded, I wish my doctors had been able to return to the blog, and read all the good stuff, about how much I like them as individuals, and how much I value their expertise. About how lucky I am to have been referred to that clinic in the first place. And to empathise with why I might have been writing in that snarky, selfish way in the first place. I do still feel positive about the clinic in that way, regardless of what's happened in the last week, and regardless of our three failed cycles.

That's all I'm going to say in editorial on the situation (boy it's hard to stop myself). Thank you for all those emails that told me I had nothing to be ashamed about, encouraging me to keep posting. It meant a tremendous amount to me, but I just can't post in the way I used to, and if I can't, this blog seems a bit pointless. I started it so that I could say whatever I liked, whenever I liked, without fear of who was reading, and that's no longer true.

I have decided to stop posting here, at least in the short term. There is going to be way too much going on in my life over the next few months, and I cannot bear the idea of having to constantly second guess myself in what I write here. The most important thing in my life is getting pregnant, and keeping on posting may jeopardise (perhaps has already jeopardised) my relationship with those who are in charge of getting me pregnant. When you look at it like that, how on earth could I justify continuing? I tried to wait until I was less upset to post this, but sadly I'm still upset, as is H, but I felt I had to make a decision, to clear the air, if nothing else.

Please do keep in touch, you all have my email address, that won't change. I will still be in the blogsphere, but this blog will go quiet. Thank you all for everything you've given me. It would be nice to know that the world as a whole recognised the strength, the power, and the humanity of this community. And it would be nice, as many of you said, to know that a few doctors here and there found it helpful to know what it was like to be on the other side of the dildocam. Maybe they do.

Avoiding the issue

So much stuff going on in my head, so little confidence in what happens if I write it down. Thank you so much for all the emails over the weekend, it has helped tremendously. I'm stil not sure what to do next, and very nervous about writing about it. So I'm playing safe today and just responding to projgen's tag.

Mountains: Are not my friends. I think they are beautiful, but the steepness scares me when trying to ski down them, and I'm not really fit enough to walk in them, so I mostly just look. My husband loves them and would like to spend more time in them, so I must try to do better. Of course, in the UK they are more hills than mountains...

Ocean: I think this word would have been more evocative for me if it had been 'sea' rather than ocean. We spent a lot of holidays by the sea, and my brothers and I competed to be the first to shout: "I see the sea!". When my parents lived in California I found it hard to adjust to calling the local expanse of water the Ocean. I love being by the sea, the sound of waves etc., and in particular a deserted beach in Northumberland during winter. Nothing better to give you a sense of where you fit in the universe.

Music: I love to sing, but don't do it often. What I really like to do is to sing loudly to songs I know well. This means musicals, mostly Sondheim, Dar Williams, REM, various bits of 80s music, the Smiths, Pet Shop Boys, The Nields, Ani Di Franco, Furniture, and that's enough listing. I listen to classical music while I work, although I cannot listen to some of my favourite pieces (Rachmaninov piano concertos, Bach) because they are too distracting.

Zen: What I'm not. I have tried. I learnt to meditate, but never managed to achieve that deep state of relaxation that I'd heard so much about. I am not someone who finds it easy to just let go and let things happen to me. I want to make stuff happen the way I want it to be. Yes, I guess that spells 'control freak', but at least I know myself for what I am. One of my colleagues is on a mission to make me more Zen, so I will continue to try, but I'm beginning to suspect that I should just get on with my character as it is.

I won't tag anyone else as I'm such a bad responder to these things, but here are four words if you feel like playing - just leave me a comment saying you're posting about it.

Privacy, Trust, Research, Beginning

Why do I blog?

Yes, I know, not quite the post you were expecting, but something has happened which I need to blog about before going through the details of the consultation yesterday (answer, yes you are now a patient with poor prognosis, no we don't think you need to give up yet, decision probably a frozen cycle in November after a month of zoladex, because they won't let me do another fresh cycle before Christmas because my ovaries won't have recovered enough by November, and they close over Christmas).

It turns out that my doctors have found my blog. That they found it is my fault, because I posted a link to my blog from a message board site that is just about the clinic, when I was trying to dispose of my drugs. So that made the connection, I don't think it's possible to connect the two otherwise, although stupidly I have told Dr Candour that I blog in a couple of previous discussions. Ironically, I didn't even know about that message board until Dr Candour told me about it. *sigh*. I've asked the moderator of the board to delete my profile and all posts so that this doesn't happen again, but of course the words "bolted", "horse" and "stable" come to mind. I'm not sure what to do next, as of course now the privacy of this site has been violated and the whole point of having a pseudonym and not telling anyone in real life about the blog is partially gone. At least it wasn't my family who found it, and I still think it's incredibly unlikely that they ever would. They don't read blogs or message boards,Thalia isn't my real name, and I've never used the real names of anyone I mention. Nor does anyone in my family know that I even have a blog.

I was very upset when Dr Candour told us this. I was upset initially just because he told me how upset the doctors are about what they read. Apparently they printed out some bits and showed it to him. I can see how I might have upset several people if they read stuff I'd written about them here. I feel terrible that I have upset some people I respect, and some people I really like and appreciate tremendously, because I wrote something thoughtless, sarcastic, unkind and unfair. Some of the stuff is exaggerated for effect, or just plan snarky. Some of the stuff is pretty accurate, but I'm sure still would hurt my feelings if I read it about myself. Some of those doctors do have things I think they could do better - I don't rescind any of the comments about how unhelpful they can be sometimes when you ask for details about what's going on, for example - but the way to give them this feedback was not for them to read it in the middle of a post about my appointment that day. Indeed after the crappy IUI experience I wrote a long letter of feedback to Dr Candour, which I thought he took appropriately seriously - certainly things like them telling me test results got better after that. Equally when we've had good experiences I've been very careful to tell Dr Candour about that, too, as it feels only fair. So I have given feedback through conventional channels when I've been able. My concern is that the doctor who is most upset is my favourite doctor, who I've mostly written good things about, but also some snarky things that I totally see would upset me if I read them about myself. Those things don't represent the total of what I feel about our interactions, but they are out there, nonetheless.

Of course some of what I wrote is unfair and unkind, it is totally slanted by the mood I was in that day, what was happening with my cycle, and my need to occasionally write something a bit snarky to vent all the misery that is infertility, as well as to entertain you. I'm an unreliable narrator of my own life, just as everyone is. I'm sure my husband would not recall the details of some of the discussions I've reported on here in the same way that I reported them, and I'm sure he would be terribly hurt by some of what I've written about his ED. Similarly I'm sure the way I write about a particular wanding appointment is not the same as the memory of the person who did the wanding. That's the point of the blog - it's personal, it's mine, and it's whatever I want to write. The so-called anonymity of blogworld meant that I have - or had - no obligation to be kind to the people in my life in what I wrote about them here, despite what they deserve. That's why I started a new blog when I started writing about infertility, as my old one was known about by a couple of my friends. I cringe to think what my sister-in-law would feel if she ever read on here about how I felt about her pregnancy, or how I feel about my littlest nephew, born 10 months after our wedding. I love my sister-in-law a great deal, and I've also said that here, but I bet if she read it it would be the thoughtless, unkind things that would stick with her. The things that I think but would never say in real life. And in many people's real lives, there would be no need to ever write that stuff down. But I've had the worst two years of my life in the last two years, and the way I have dealt with it is to find a place where I could sometimes be my worst self with no fear of causing hurt to the people I love, most especially my husband, who knows about this site but doesn't read it because he knows that I need to be able to write stuff without the fear of how he would feel if he read it.

So, having had a chance to think more about this, I'm not just upset because I have upset people I care about and respect tremendously, but also because I feel violated. It's like someone went through my private journal. I know it's not like that - I put this stuff out on the internet, there was always a chance that someone I knew in real life would find it, and I'm being very unfair expecting to have the upside of the public side of this blog without any of the concomitant downside - but that's how it feels. I don't know what to do now, as my ability to write about what's happening with the clinic feels tremendously compromised. I could go password protected, but then all the effort I go to to learn about the science and share that with you guys has limited utility, and the chance of some new person finding this and being able to benefit from zoladex, for example, is also limited. I could start up again with a new identity and reform my links to this community, but that feels odd - I have good relationships, albeit electronic ones, with some of you already, and I don't really want to start building this community from scratch again. Or I could have a second blog which is password protected, where I write about the stuff I don't want the clinic to read...no, that just seems awkward.

I'm also upset because it's knocked Dr Candour onto a somewhat lower pedestal. I'm not sure why he raised it with me at all. Think about it - situation before he raised it, several upset doctors. Situation after he raised it, several upset doctors plus a very upset me and an angry H. I can't take back what I've already written. He didn't want me to raise it with the doctors directly so that I could apologise (I'm going to ignore that). He raised it, he said, because it affected the nature of the doctor/patient relationship. Of course it wouldn't change how they treated me, he assured me.

On reflection, that statement confuses me. How does it change the nature of the doctor/patient relationship? Because they now know what's going on in my head while they're wanding me? Because they know that I think about them as real human beings, with strengths and weaknesses like the rest of us, rather than impersonal doctors, rather better than the rest of us? Because they know rather more about my life than they'd like to? On that one, well, that's really not my problem, I didn't ask them to read the blog! Because they now know I can be mean and nasty in an unjustified and uncalled for way, and that will affect how they feel about me at the clinic? But that would mean it would make a difference to our treatment, and he said that it wouldn't...

So I'm a bit confused. I know the doctors asked him NOT to raise it with me, but he went ahead anyway, so he must have a good reason. I'm going to have to write to him to clear this up, to understand what he wants me to do differently. Probably he'd rather I didn't blog at all, although I'm sure he won't say that as I'm sure he'll feel it's not really up to him.

In deciding what I do next I need to work through why I blog in the first place.

I blog because it is impossible to share how awful this experience is with anyone in real life. I do have a colleague at work with endo so bad she decided against IVF and is adopting from China. I do share a lot with her, but not to the extent of detailing wanding experiences or egg collection stories - she's not interested in those details. Yet those details are important parts of how those of us online build intimacy and understanding with each other - not to mention sharing coping strategies. So I blog because you understand me in a way that no one in real life ever can, except possibly H, because you know the pain and you know the indignity and you know the stress and the complexity of what we are experiencing. And I'm glad I don't have to inflict that on people in real life. They don't get it, and I wouldn't have as rewarding an experience sharing with them. I blog because I don't see how I would have got through the last two years without the support that you offer. I blog because I've got to get out all the shit that is in my head, or it would drive me mad. I blog because perhaps my life as I wanted it to be is going to end, and I have to have a way to process that, and your perspective on my processing helps me see things more clearly. I blog because it's good for me to get stuff out there rather than sitting and fretting. And sometimes, but perhaps infrequently, I blog because I want to help someone else not have to relearn the stuff I've already struggled to learn. So yes, most of why I blog is about me. It's mostly selfish, and mostly very very subjective. It's not about concern for my family, although I feel a lot of concern for them. It's not about my love for my husband, although sometimes that comes through. It's not about a fair and accurate portrayal of my doctors, although it is sometimes about my experience of working with them.

It never should have gone further than that, and oh how I regret that it has. I regret it because I upset people I respect. I regret it because for me it has taken the shine off a doctor who I think is tremendous in many ways. I regret it because this no longer feels like a safe space for me.

Having worked through all of this, I think in the end I will be able to keep blogging as I have done with just a few changes. I will probably limit the snarky comments about the doctors and nurses, but I won't - I can't - promise to never say anything unfair again. Sometimes my experience is different than yours, and on here it's my experience that counts. But if the people at the clinic want to read this, then they need to understand that it's not meant to be fair or kind, or even respectful, it's meant to be helpful to me. Although maybe I'm kidding myself. The thought of writing something like: "Dr Gorgeous's earrings were so pronounced today that I was worried they were going to dip into the ultrasound gel," knowing that she was going to read it, is fairly horrific (and NO I've never written that, nor experienced it, so don't go getting upset about it).

I am not going to make any decisions while I'm still so upset.I'll think about it more over the weekend. I'm turning comments off as I don't want you guys to write things in the comments that would upset the doctors if they are still reading. If you want to discuss this, please email me - the link is on the top left.

Ask again later

I'm in a bit of a funk about the appointment with Dr Candour today. I had a full-on anxiety dream about it yesterday, which included an appointment with Dr Condescending that never quite happened due to her being overworked, but did involve a long period sitting in an office with her with a bunch of other people who apparently couldn't go elsewhere; potential options on what we might do next, prepared by H on scrappy bits of paper and laid out by Dr Condescending for me to pick up and react to (I reacted very badly to the donor egg one); H disappearing to train with some soldiers over lunch, and me getting cross because he wasn't there to talk to Dr Condescending with me; A man conking out while sitting round the edges of Dr Condescending's office, and it turned out to be because she'd given him heparin when she shouldn't have done; us ending up at Dr Condescending's house where her husband walked out in a bad mood and she told me she was 2 days pregnant; me suddenly realising that it was 16:15 and we were late for our appointment with Dr Candour. I should add that in this dream Dr Condescending didn't look like she does in reality - she was fatter, for one thing. My shrink told me that if you dream of someone but they don't look like they do in reality, it's because you're conflating other people with them. I think I might have been adding myself into Dr Condescending in this dream, since the fatter bit would make sense, plus her hair was more like mine.

I wasn't even going to record it, since I know how much you aren't interested in my dreams, but once I started typing it all just spewed up onto the screen, sorry. I am not going to over-interpret it, suffice it to say I know I'm anxious and this didn't help calm me down.

I'm anxious because I'm going to ask some questions about donor eggs, and our chances of success, as well as the more mundane things about when can we cycle and should we do Zoladex again. In fact, here's the list I prepared and emailed to Dr Candour last night - anything missing?

• We want to do another IVF cycle as soon as we can. How soon is that, given that we are trying not to let the endo get out of control?
• Should we do zoladex again? One cycle probably isn't enough for the endometrium re-setting (I know he doesn't believe in that, anyway), so it's really just to keep the endo under control, and since I've now had 4 un-suppressed cycles since my last lap (2 IVF, one post miscarriage, one now), how much effect is the zoladex still having?
• Given the 4 cycles with estrogen floating around, should we do another lap, even in the absence of an indicative endometrioma? (although who knows, I may have one by now)
• Should we do a frozen or fresh cycle? How good are those embryos we've got frozen, really?
• If we get a good number of embryos again on a fresh cycle, shouldn't we be attempting blastocyst transfer? How good is the discrimination at day 2 really?
• Does the HFEA restriction re number of embryos transferred drop on my birthday exactly (13 Jan), or is there some leeway? How much?
• Are we kidding ourselves, and really we should be thinking about donor eggs now rather than later?

I'm also anxious because I'm remembering Julie's mantra from a post ages ago where she talked about what she wished she'd known, and one of the entries was: "If you've had three failed cycles, switch clinics. No matter how much you like your doctor, they aren't working for you." (I'm paraphrasing as I can't find the entry). I don't want to switch clinics. I like the atmosphere at ours, I trust Dr Candour and Dr Condescending, I like that I can email and get answers to science questions, that they know me, that it's convenient to our house, that they are non-profit making, that they designed a protocol just for me. And they did get us pregnant. Once. 

However, I have a sneaking suspicion that I am being an idiot. As I've mentioned before, there is a clinic in the UK which has double the success rates of anywhere else in the country. I know they screen on FSH, but I would pass that screen (assuming it stays where it's been for the last 2 years). Dr Candour says they also do ET at the clinic next door for patients with crappy prognoses, so that those numbers don't show up in their stats. He is a man of integrity, so I don't think he's making it up, but still their published figures haunt me. I also know that they are much harder to work with - they don't tell you what's going on, you have to go in every day for bloods etc., and they don't give appointments so you can sometimes wait for hours (hard to do with work), sometimes you have to come back in the afternoon (similarly hard with work), etc. Plus they push ICSI and IVIG on you, at more expense. But the success rates, how they call to me. A colleague at work got pregnant there, twice - with her son, and then with her twin boys, having had five failed IVFs elsewhere, so she is pushing me to go to them. I don't want to, but I think I'm being stupid. That's not a very good combination.

To clear up a couple of questions from the last post. We can't just suddenly switch to DE, there is a whole procedure to go through and donors are very hard to find in the UK, although I understand that my clinic has a good list and that the waiting time is not too bad (it can be years). So there is no question of doing half my eggs and half donor, for example. Second, Dr Candour doesn't just uniformly suggest five cycles, he suggested five on the basis that three completely negative cycles would lead him to suggest we stop, but we've had one pregnancy so that improves our chances, hence the additional two before he'd figure we were SOL. The reason that doing additional cycles delays adoption procedures is that in the UK, social services demand that you have stopped any kind of treatment before you start the adoption process, and some  even demand a six month wait time, to ensure you have mourned your biological children and let go of that (not sure six months is long enough, but there you go). So while we are still pursuing treatment, there is nothing we can do to initiate adoption. 

I can't help feeling that we're coming to the end of the runway, with no take-off in sight. Yes, I know we had a short-lived pregnancy, but many people have that and never get pregnant again. Yes, I   know my FSH is low, but I still don't stim easily. Yes, I know we produce good looking day 2/day 3 embryos, but who knows what they look like at day 7 or later? And I will be 40 in January. 40.

Let's see what happens this afternoon. I will probably be unable to post until later this weekend since we're heading off to see friends for the weekend, and not sure what their internet connection is like. I'll update when I can.

Relentless foward motion

Yes, I've been somewhat absent. I've had good days and bad days. I've read a lot of adoption blogs, from the beginning (sorry if you thought I was a weird stalker in your stats). I've started the adoption post, but haven't had the chance to finish it. I've been quite busy at work, partly so that H and I could bunk off early on Thursday and take Friday off - a conspiracy which H hatched with my assistant, and told me about Wednesday evening.

It turned out H had booked us into an amazing restaurant just outside London, which also happens to be a hotel. We had been there for our first Valentine's day together. This time we stayed in the most utterly glamorous room (a fish tank in the wall between the bathroom and bedroom, a steam room in the bathroom, a walk in closet with automatic lighting, a view over the countryside, sugared almonds in a laquer box on the coffee table). We ate a lot of extraordinary food, both at dinner and then the following morning for breakfast, and later tramped through the countryside for hours, miraculously missing the rain that's been chucking it down here for the last few days. H even climbed a fence to go and pick me some apples on the edge of a wood. It was very romantic.

We had a long talk about where next over our lovely dinner. H really wants to do the last two cycles that Dr Candour recommends, and until we've done those, the UK adoption agencies won't even talk to us. He is also keener on donor egg than on adoption right now, as he feels the experience of being pregnant and knowing the baby from that first moment are an important part of parenting, and one he'd like not to miss out on. I'm not convinced that donor egg would do us any good, since we seem to be making perfectly lovely embryos, but they just don't want to stick around. Plus I think donor egg would be hard to do, there aren't exactly donors coming out of our ears, and all my friends are too old. More on this when I've worked through the adoption stuff a bit more in my head.

It was a good conversation. We are good at talking about this stuff. It made me feel, well, not optimistic exactly, but empowered, like we have options. Sadly within an hour of getting home I was feeling very down again. Something about the grim reality hitting home. Another week til our appointment with Dr Candour, probably another two months minimum before he'll let us into a new cycle. Our house is a mess - months of building works that were supposed to be minor but have dragged on and found new problems. I'm still fat. Work sucks. You get the message, I'm not going to bang on about it here.

I'm struggling with the time of year. The new year makes me think of my grandmother, and miss her more than I do all the time anyway. I don't think I believe in Gd any more, not sure I ever did, and the rituals of religion, which I used to use as a way of creating a time for spiritual reflection in my life, don't hold the same pleasures they used to. I don't really want to reflect on the last year, all the good deeds left undone, all my sins lined up in front of me. It was bad enough while I was living through it. And looking forward with optimism to the next year also seems like too much to bear. What will there be but more of the same? Why is this the third Yom Kippur I will have sat in synagogue, hoping for a different status next year? But still, I've made our pre-fast meal, and in a minute I will go and shower and put on clothes suitable for synagogue. I can't keep away, despite not knowing why I'm going. Perhaps I'll know when I get there.