Telling people

Written 20th December, 2014.

We’ve finally reached the part of this journey where society says we can let people know what’s going on. Thanks for the green light, world! On Tuesday we had our 12 week scan, and baby is literally alive and kicking (fidgeting, he says). It’s growing fast, too, and we’re now 12.6 when we thought we were 12.4 (which was advanced from being 11.4 when we thought we were 11.1). The NT measurement is 1.4 and, whilst we still await the blood test results, we are beginning to consider starting to think about possibly relaxing. A little bit. Maybe. PHEW! I have a photo, but I won’t post it here. I’m still in such a state that I find it hard to see other people’s photos, and given my ‘readership’, I just don’t think it’s appropriate to post such an image here. We’ve even booked a 20 week scan, which seems extraordinarily confident. I’ve been asked what we call it. No pet names just yet. We call it “assuming all is…”, “if everything…”. We’ll have to do better than that, but not until we’re ready.

There are lots of reasons why I really disagree with this socially mandated tradition of waiting to 12 weeks before telling people you’re pregnant. It’s a way avoiding embarrassing conversations in which you have to ‘un-tell’ people you’re pregnant because your baby has died (miscarriage makes people so uncomfortable – poor them), but I do understand that these are horrible conversations, and women may genuinely want to grieve in private. But, and this is my main objection, the people who are affected my miscarriage are grieving. This is a legitimate human emotional process and it does people damage to bury it. Grieving means that sometimes people experiencing it get emotional angry and withdrawn (and a whole range of other perfectly normal grief responses), and they need support and understanding They don’t need socially imposed secrecy and shame. This, if they’re keeping the pregnancy and then miscarriage a secret, is support they don’t always get. I think this a cruel and wrong. I’ve been lucky to have so many wonderful friends and family around me to give support, but I know lots of women who have kept everything secret and suffered alone. And this says nothing of the partners who’s emotional needs are often even more neglected. Still, at least no-one’s made a social faux pas.

That said, people do say some really weird things to women who have miscarried and some of those are down right offensive (it wasn’t really a baby yet etc.). On balance, however, I think that this is a consequence of people not really knowing what to say. Maybe if everyone was more open, people would get better at not putting their foot in it. So I stand by my original point.

I want to write, however, about another delicate problem, the weight of which I feel very acutely, and to which I don’t really have a solution. This is the problem of telling people who will be upset by the news. Having been on this road for over 3 years, I know lots of people who are in similar situations. I know (because I’ve been there – and if you follow my blog, you’ll have seen the messy outpourings of grief that follow other people’s pregnancy announcements) how devastating Other People’s News can be. It’s not selfishness, it’s self preservation mixed with varying degrees of Post Traumatic Shock and (guess what?!) stifled grief (from all of that not-telling you did to stop people from being uncomfortable when you had your miscarriage). That’s really damaging, and it makes me feel really sad that friends of mine are going though it. It makes me even sadder that, now, I am the cause of this kind of upset to these friends. I’m sorry.

I want to show these friends of mine that I have enough respect for them that I don’t announce in public places where they can’t get away from a social situation, but it also feels like such a breach of trust to call or email someone and bring such upset and anguish into their home, their safe space. It’s such an intrusion. Even writing these blogs caused me to really think about who might see and be upset by them. All I can really say is that I am sorry, and I do get it. I used to feel the same. I hope it will happen for them soon, too.

Risk

Written 13th December, 2014.

Last Tuesday we had what Professor Brosens described as a ‘highly reassuring’ scan. We are now over 11.4 weeks and the baby was leaping and dancing about, kicking and hiccoughing. As I commented to the consultant who scanned me, we’ve never seen one that big before. Every good scan means that it is just a little bit more likely to happen this time. The odds are, as you might say, increasingly are in our favour. But can we relax? Of course not.

Next Tuesday afternoon is The Scan. The Big One. 12 weeks. And we’ve been there before, and it was not a happy experience. Although we’re beginning to turn our minds to the possibility of there being a chicken, we’re still not quite ready to actually count it.

The 12 week scan comes with tests (http://www.nhs.uk/conditions/pregnancy-and-baby/pages/screening-amniocentesis-downs-syndrome.aspx#close) which we both (think we) want (great if the results are good) and don’t want (what if they’re bad?). The consultant gave us a bit of a talking to to ensure the implications of getting those test results. We have been through so much already. Have we considered what the possibility of high risk results might mean for us? She hastily assured us that she had not noticed anything on the scan that made her mention it, in particular, but that she felt that too many people have the standard tests without really thinking carefully about the implications of the results. The first thing to do is to realise that risk is not diagnosis. Lots of people, apparently, don’t understand the difference. So a risk of 1:150 is considered ‘high’, but, of that, it means that 1 baby in 150 with those results would have a condition such as Down’s Syndrome. 149 babies would be fine. It’s still pretty scary, though. We’ve been through so much to get to this point. Would we make a choice to end it? No. I don’t believe that I would even consent to further invasive tests like amniocentesis because of the 1% risk of miscarriage. But I think that knowledge is better than no knowledge, so we plan to go ahead with the screenig next week.

The odds are in our favour (mostly – they were more in our favour three years ago when we set out on this journey, but what can you do about time?). How much more can we take? Could we ever do it again, even if it works out? We always thought we’d have more than one child, but it’s been such a a struggle to get to this point, and I’m not getting any younger, and the risks will only increase.

And I know too many stories. My own sad ones, and the sad heartbreak of other women whom have been kind enough to support me on this journey. You think what I’ve been through is bad? I know stories of recurrent miscarriage that break my heart and chill my blood. No-one can keep their innocence about pregnancy after this.

At the end of The Lord of the Rings: Return of the King (the film, sorry, not got my literary hat on this morning!), Frodo says: “How do you pick up the threads of an old life? How do you go on, when in your heart you begin to understand there is no going back? There are some things time cannot mend. Some hurts that go too deep that have taken hold.” We did go back and are in the midst of having another go, but how many times can anyone do this? What has happened to us will stay with us forever. It has made us, in a really fundamental way, different than we would otherwise have been. What’s the cost? ££££ on counselling and cognitive hypnotherapy to try to repair the damage done by post traumatic medical shock. I still can’t look at other people’s 12 week scans on facebook. I think I could be The Old Woman Who Lived In A Shoe, with so many children I didn’t know what to do, and a babybomb scan photo would still turn my blood to ice. This is a terrible learned behavour. I feel sad that I seem to be stuck with it.

What else can I say? Wish us all luck for Tuesday.

Superstition and pseudo-evidence-based hysteria: What recurrent miscarriage has done to my rational mind.

Written 22nd November, 2014.

We keep marching forward, one day at a time. What else can we do? Neither of us are ready yet to think about the possibility that there might be an actual baby at the end of all this. All of our utterances about short, medium or long term planning are qualified with ‘Depending on what’s going on, of course’. I know it annoys him, because he thinks that I think that he’s forgotten that there’s something going on. Or potentially going on. I qualify my qualifications by hastily explaining that, no, I don’t think he’s forgotten or unaware, but, rather, this is my way of not ‘jinxing’ things by foolishly and naively hoping for even one second that it isn’t all going to go terribly wrong again, again. Again.

Rationally, every week that passes means that the chances of success are just that little bit higher. We have now had a ‘good’ scan (i.e. one where the baby hasn’t died) at 8.3 weeks. Anecdotal (perhaps it’s also scientific; the people who I have heard say it say that they have heard it from doctors) evidence says that 8 weeks is a major milestone, as the baby moves from the embryonic to the foetal stage of development. Lots of the things that could have gone wrong have, by now, gone right. Or at least well enough to not shut the whole enterprise of life down. This is encouraging. What’s possibly slightly less encouraging is that that means we’ve had 3 days’ growth in 6 actual days. Funnily enough, I don’t find that I’m too freaked out by this, as I did feel that last week’s scan declaring us to be 8 weeks on the nose was rather over ambitious. I had thought we were more like 7 and a half. Mind you, we were 6.1 only 8 days prior to that. I guess it’s fractions of millimetres they’re measuring, and it’s different people each time making the clicks, so there’s going to be some room for some wriggle room. Everyone seems happy, anyway, and the sonographer didn’t make any mention of ‘slow growth’ on the report. And, actually, 8.3 does fit in almost exactly with my calculated dates. I need to stop looking for things to worry about.

The biggest moment of (post traumatic) insanity came when we realised that we were going to be scanned by The Sonographer Of Doom. I’m sure she’s absolutely lovely, but I can still remember her words almost three years ago when she was scanning me and said ‘Its not good news, I’m afraid.’. I know that there’s no easy was of saying it, but it was like being punched in the guts, and we both remember it, and associate it with her. I silently panic, as if there is, actually, some sort of mystical force at work in the universe (which I don’t believe that there is), and that it’s about to get me again.

Happily, it turns out that it isn’t. The lone magpie I saw on the roundabout on the way here fails again. Quiet my dark superstitious, paranoid mind. She even gave us a photo. He wasn’t too keen on getting it, because, I think, he’s not ready to breathe out and relax, but I thought it might be nice to have (and then immediately thought that it might bring some inexplicable bad luck and wondered whether I was tempting fate by accepting it). Whatever his reasons for hesitating to take the pictre, he says it isn’t because he thinks it’s bad luck. In truth, if we got a scan picture every time we went for a scan, we could have papered the cloakroom toilet with them by now. Given my aversion to seeing the things on social media, I’m not really sure what I’m going to do with it, anyway. It doesn’t even look like anything, except perhaps a potato from space.

Afterwards, we need to negotiate the next scan appointment. The EPU clinic is busy and we are seen to be making good progress. Can we go to 12 weeks? No. I explain that #3 died within days of a 9 week ‘good’ scan, which had seemed perfectly healthy. Worse, the progesterone I was taking (and am taking again), masked any sign that anything had gone wrong and it wasn’t discovered until 13 weeks at the ‘official’ scan. I also explain that I don’t want to have to wait until the ‘official’ scan because the way they have the rooms set up, with large monitors up on the wall in the corner, means that you get an excellent view of your deceased baby (in our case, as a screen grab, left up there even after the scan had been completed) starring down at you from the corner of the room whilst they send someone to fetch the leaflets. This, presumably is in case you forget what’s happened. Oh, and the delivery of the news on that occasion was truly exceptional: ‘Oh, there should be a baby in there.’ No shit?! And me here for my 12 week scan, and all… It’s enough to make you wonder whether they train some of these sonographers in how to give bad news. (Let me qualify this, MOST are EXCELLENT, but when they aren’t, they really aren’t).

I’ve made my case, and the clinic nurse is going to see what she can do. But I do need to book in with a midwife, she tells me. I don’t want to do this, either. More jinxing and bad luck. I don’t like having to text them when it all goes wrong, I plead. You won’t get your 12 week scan in time if you don’t, I am told, in no uncertain terms. Check mate. So, that’s all now booked for Tuesday. It will take about a million years to recount my history. I hope she knows how to ‘manage’ me and my craziness…

All the other signs are encouraging. I permanently feel as though I’ve just disembarked from a Waltzer, and I’m totally knackered. All good, although, as we know, meaningless, really. Still, we must keep moving forward, one day, one week at a time. Baby steps.

Time and money: just one of those things?

Written 15th November, 2014

After another week with very occasional light spotting, my nerves could take it no longer. The two weeks between the 6 week and the 8 week scan, given that babies #1 and #2 went between 6-7 weeks after seeing a heartbeat (normally regarded as a sign that all is on track and well) was making me anxious enough; the spotting was pushing me over the edge. I phoned the EPU and left a message asking for advice. They offered me an extra reassurance scan yesterday. I must say, for all my reservations about going back there, they have been very good to me so far. (Although my husband hates the car park with a passion because the card reader is out of order and the notes feeder doesn’t give change. It’s been like this for 3 years…).

Despite instigating this extra scan myself, I was filled with feelings of dread and doom from the moment it was booked. One of my current problems is that I get tired very early in the evening and end up going to bed at about 9-9:30, but I also get very hungry, so hungry I can’t ignore it, which wakes me up in the middle of the night (I’m a secret night-time yogurt eater). As a result of this combination of symptoms and the stress of the anticipation of the scan, I was laying away at 3 am the two night preceding the appointment wondering how the hell I was going to cope if it all went wrong again. How would I manage work? I am supposed to be leading a school trip next week, who will take the kids? How will I get everything sorted? How will I get the right care sorted for my ERPC, should I need one? Will I trust local services to do it, or will I run away to another hospital? Too many thoughts, driving me mad. I am not enjoying the psychological legacy of three missed miscarriages.

As it turns out, we have actually made time since last week’s scan. We’ve gone from 6.1 weeks (where I thought I was 6.3, and hence assumed all kinds of disasters) to 8.0 on the button, which is about 3 days ahead of where I expected to be. Of course, it’s a matter of fractions of millimeters at this stage, so no-one is concerned. The little heart is fluttering away (and so is the big one!), and we can say that another milestone has been reached. Phew! We were in and out in under 10 minutes today, and even managed to have a tummy scan rather than the undignified internal one (is it weird that I felt slightly cheated? I’m used to getting a closer look…). Although we are not even close to the edge of the woods yet, we are past ‘danger point #1’, and I am feeling encouraged (for now).

What’s the difference? I’m putting it down to the ‘magical’ combination of progesterone (400mg, twice daily) and heparin (those dreaded daily pricks – my husband does them – I can’t seem to find the nerve). I am so grateful to the team at Coventry for putting me on this course of treatment (http://www.uhcw.nhs.uk/our-services/a-z-of-services/consultants?cID=341). I believe that, without it, I would not have got past 7 weeks again. I am more convinced than ever that have not experienced bad luck, but suffered from a failure to properly investigate, diagnose and treat an underlying medical problem. Whilst I realise that funding is a serious issue, I also wonder, on balance, how much has been spent on the 6 lots of surgery I have undergone. I can never know, but my instincts tell me that the treatment plan I am on now might have saved #2.

I still think that taking aspirin as a precautionary measure prior to conceiving #3 may have interfered with implantation sufficiently to allow a Turner Syndrome baby to take hold, and, I wonder whether, had I not been taking it whether that one would have implanted at all. This is all speculation, of course. Lots more medical research is needed with much bigger, scientifically regulated, double blind trials to answers these questions once and for all. I’m very pleased to read that Tommy’s are going to launch a new early miscarriage research centre (https://www.tommys.org/new-research-centre). I expect many of my hunches will be borne out in the coming years, and couples won’t have to endure 3 miscarriages and be fobbed off with the ‘bad luck’ line in years to come. Getting real answers, sooner, if the tests are quick and reliable, and the appropriate treatment available will save a great deal of time and heartache for a lot of couples. I also wish that the long awaited results of the PROMISE progesterone trial (http://www.miscarriageassociation.org.uk/information/research/the-promise-trial/) would hurry up; it would be nice to see what the actual research says about at least some of the medication I’m currently taking!

As for me, I’m enjoying the mental relief I got from the encouraging scan of yesterday for a while longer before new scan doom sets in for next week. We know it can still go wrong…

Pricks

Written 6th November, 2014.

I am a human pin cushion. I have 8 dot shaped bruises covering my thighs and tummy from the daily heparin, I’m having regular acupuncture, because it is relaxing to lay in a darkened room and not be able to move, and now I’ve had a ‘flu jab, too. The ‘flu jab was today’s unexpected bonus, following our second good scan at Stoke Mandeville’s EPU.

I was honestly driving myself crazy with worry about this scan. So much so that strange superstitious thoughts were starting to get more mental air time than is considered sane. For example, does seeing a single magpie and then another, second single magpie make that two for joy or double the sorrow? Oh dear.

I had a moment of dread while we were waiting to be seen that convinced me that history was repeating itself. The sonographer from mc1 still works there and I saw her arrive. She’s probably lovely, but to me she is the harbinger of doom. Get a grip.

No tears in the examination room today, and, once again, the team are lovely. But there is a technical hic of some kind which causes the sonographer to say to herself ‘oh no, lost it again,’ ‘Unfortunate turn of phrase,’ I said. I bet she felt bad. I didn’t mean for her to, but the comment wouldn’t stay in.

She was very nice, though, and found the heartbeat straight away and showed us. Milestone #2. We’re relieved, but by no means confident, we’ve been here before and still lost it. But its a step in the right direction.

The ‘flu jab was a bonus and the midwife who did it asked us if we planned to have our baby at this hospital. We just kind of looked at each other… Baby? It still doesn’t really occur to us that all this jabbing and scanning and waiting might actually result in an actual baby one day. It makes me sad that this has happened, but we are the victims of circumstance.

Two weeks before my next scan. If I count that in pricks, that’s 14 injections and many more acupuncture needles. What a way to carry on, but carry on we do, until something makes us stop.

Hold on, hold tight, hold your breath

Written 3rd November, 2014.

We spent several hours at Stoke Mandeville hospital on Thursday morning. We were seen and I was scanned by 9 am, and the sonographer and team were lovely. They really put me at ease, which was great because I had been really dreading going back to that hospital. Put it this way, I avoided it almost entirely (except for the night in A&E after the Massive Bleed) and went to UCLH for all of my scans and for my ERPC, too. I wonder what my notes say about me; I imagine I’m earmarked as a ‘difficult’ or ‘demanding’ patient, but that they need to be nice to me (I am sure they would be anyway). The clinic nurse recognises us from MC2, which is rather sad. For all of us.

I feel like a coiled spring; an injured animal. It would take much to set me off, to make me walk out the door and straight back to UCLH. I just trust them there. But Stoke Mandeville is what I’ve got, because the consultant here has agreed to follow the Coventry plan, which St Mary’s wouldn’t have done because they don’t think progesterone and heparin are right for me. With St Mary’s, we’d be letting nature take its course. They would have done a repeat TEG blood test to see whether my blood gets extra clotty during pregnancy, but that wouldn’t have happened until 6-7 weeks, but since my first two babies died at about that time, that seemed too little, too late.

I am very grateful to my GP and to the consultants at Stoke Mandeville hospital for agreeing to take me on on these terms. Nevertheless, this arrangement of following the Coventry care protocol is not without it’s challenges. I’m getting heparin injections and I say they’re to be given from an in-uterine scan but Stoke Mandeville say they usually give it after a heart beat has been seen; when the pregnancy is considered ‘viable’. This is resolved by me going into the car park to get some phone signal so that I can download the letter from Professor Quenby from Coventry and show it to the Clinic nurse. So I got my prescription, because everything on the scan looked good. I was a blubbering mess before I’d got my trousers off. But for the first time, we’re bang on for dates (previously we’ve had a bit of ‘Are you sure?’, ‘How regular are your cycles?, ‘Could you have your dates wrong?’). So that’s positive.

Having established that I could have the heparin, we then went to the pharmacy to collect it. Having collected it, we were asked who would be showing me how to inject? And where were we getting our sharps bin from? Errr, you? Or we could hope for the best? Apparently these were not the right answers. Back to the EPU. They think the pharmacy would have sorted the care pack out. Someone is despatched to get one. When we get it, I ask whether the nurse can do the first one. At first she refuses, but then, because I’m special (stubborn) and she is kind (and tired), she does it. Thank goodness for breakers of the little rules.

The worry is, I’m still spotting, which doesn’t help with the optimism. It’s very disconcerting, you know, trying to teach whilst wondering whether that feeling is the first sign that your baby has decided to make an early exit from your body. Can you imagine the playground gossip of I had another Massive Bleed in the classroom?

Next scan Thursday. Into the danger zone we go again.

On the plus side, I feel sick.

The First Big Day

Written 30th October, 2014.

It’s fair to say that I am somewhat apprehensive about this morning’s hospital visit. This will be the fist scan for this pregnancy and, if it goes well (the scan and the cooperation from the prescription-giving powers that be), I will get my supply of heparin injections. Then I will have to inject myself daily, which is not particularly something that I’m looking forward to doing. But there are many bridges to cross on this quest before I get to that stage.

The weekend brought a little spotting, which was alarming, and I sent my husband out on Sunday morning to fetch a digital test (off he dutifully went to join the Whitby Goths on the walk of shame, looking for an open chemist). I was convinced that I had a) imagined the whole thing, or b) it was already over and the spotting was an ominous sign. The digi proved hopeful, however, showing that the numbers had going from 1-2 weeks to 2-3 weeks, over the time period of one week (amazing!).

The lovely RMC ladies on my regular Mumsnet forum were sending their support and advice, and many of them have had similar issues with spotting which they put down to the cyclogest, which can cause irritation (specifically, the way you take it – enough about that). Hopefully this was the cause. I also emailed Professor Brosens at Coventry who, wonderfully, emailed me back on a Sunday (!!) and told me spotting was reasonably common and to increase the cyclogest dosage from 200mg twice daily to 400mg at the same frequency.

So, today we are off to Local Services for our first scan. I don’t like this hospital. The people are nice enough, but they just don’t know what to do with me. They have protocols for MC, but I’ve been there, done that and got (several copies) of their bloody leaflet. I am taking my letters and paperwork, and if anyone there suggests that they will come blindly at me with a spoon (my description of how an ERPC is performed), I will be on the first train down to UCLH!

But let’s not be pessimistic. It could be OK. I was listening to my relaxation recording last night, and trying to visualise the happy outcome I want. The trouble is, I don’t know what that would look like. To me, the disconnect between being pregnant and actually having a bump, much less a baby, seems, if you’ll pardon the expression, inconceivable. A couple of people (pharmacists and such) have already congratulated me when I’ve been picking up my prescriptions and filling in forms. I tell them, thank you, but there’s a very long way to go yet. This is my 4th pregnancy, and I have nothing but an education in fertility and a pile of words to show for it.

Every time is different. Maybe this time is different… Dare I let the hope in?

Eight weeks of silence begins

I’m writing these posts now (beginning October 19th, 2014), but they won’t be published until much later. I’m doing it this way because, oddly enough, in spite of my grumping to the contrary, I have something that I do want to keep quiet for the moment.

I do, however, want to record the next 8 weeks’ journey, because it’s a scary one that doesn’t always get discussed much and it’s a really scary one for the ladies and their partners who are on it.

Yesterday, I discovered that I am pregnant again for the 4th time. It was a bit of a surprise, to be honest. I had been advised that, since everything was taking so long, I needed a HSG procedure (where they inject liquid into your uterus and tubes and X-ray you to see if there are any blockages etc.). After much chasing of consultant’s poor secretary I had the appointment booked for next cycle. That way we wouldn’t waste an egg and could try again after the procedure. Then, on Friday, I had some spotting. Blasted period was two days early. That changed things. The procedure would now be right on my ovulation date. Another month wasted. Another month I wasn’t going to get any younger. I texted the nurse to see whether I could have an earlier appointment, and she’s going to find out for me on Monday morning. I now need to let her know that I no longer need the procedure at all.

What made me test on Saturday? The pain sleeping on my chest on Friday night, the fact that the spotting had stopped rather than developing into a full period flow. To give you an idea of how confident I was that it would be negative, I can tell you that I left it on the side in the bathroom and didn’t check it for half an hour. Given that the results are only really reliable for 10 minutes, I assumed that the faint line was an evaporation line. But it bothered me enough to buy a ClearBlue digital test later that morning. Which was positive. Decisively.

Alright, then. So far I have emailed every medical care-giver I’m currently connected with (which is a long list) to set the wheels in motion to get the early scans and prescriptions I need if I’m to stick to the Coventry plan of progesterone (straight away) and heparin injections (after the pregnancy is confirmed to be in the right place – heparin and an ectopic pregnancy would be very dangerous indeed) . I’m hoping it won’t be a battle. I’m hoping that this one will stick.

The difficult demographic

In the very small bits of time when I’m not feeling sorry for myself, I feel sorry for the medical practitioners that come in to contact with women like me. Recurrent miscarriers; professional, educated late 30 something women. We are used to Getting Stuff Done. We’re clever, organised and our memories are long. And thanks to the Internet, we can research, read and gain at least a basic understanding of journal papers and read peer reviewed, published research. This ought to make us more difficult to fob off, but somehow this seems not to be the case. What is happening instead is that these kinds of character traits are making it easier to piss us off when we get fobbed off.

Don’t get me wrong, we know we’re the subjects of a very little understood area of medicine. RMC, after all, has been seriously underfunded for a long time. This is the case, in my view, because it happens to women and you don’t die from it. But there is current, peer reviewed research going on, and its high time that all of the major centres of excellence got on the collaborative bus, put their egos away and started moving forward.

Trying a new procedure at a new clinic (after reading their research) is not the same as going down to the health food shop and loading up your basket with as many supplements as you can carry, because you read on line that they worked for someone’s sister’s cousin. But some top consultants think it is the same.

I’ve been told IVF won’t help me, and I understand my medical issues sufficiently to accept this and not spend my money going privately for that treatment. I have also read several published medical papers on NK cells and new research on the dynamic process of implantation, and I don’t think it’s b*llsh*t. So I’ve made informed choices about what I need and what is worth paying for. Yes, I have also heard anecdotal stories of success, too. But I’m not just getting recommendations on buying a fridge, so, although they’re helpful, I’ve looked at research with medical authority, too. I’m not a fool.

The Philosopher R.M. Hare, in response to the question of whether unfalsifiable beliefs were meaningful and rationally held posits the theory of Bliks. In this theory, he gives the example of a student at university who thinks that all of the professors are trying to kill him. Nothing will shake his belief in this. Even when the professors are kindly towards him, he thinks to himself, “Aha! They are trying to  lull me in to a false sense of security before they strike!” This Blik is clearly insane, especially because no amount of evidence will persuade him to consider changing his view.

I am concerned that there are a few Bliks mixed in with the egos at some RMC clinics. And who suffers? Women and their partners who are looking for help and answers. We’re intelligent enough to know the difference between medicine and ‘snake oil’. Treating us as if we’re not is extremely frustrating, and I’m sure that everyone in the RMC world, on both sides of the speculum would agree that feeling wound up isn’t (literally) going to get us anywhere.

A little collaboration would go a long way. Bury the rivalry, please.

New ways to grieve for the future I’ve lost

For months I have been making big efforts to lead a normal life a not let what has happened get me down. I have invested time and money in therapy and making plans, and being positive; grateful for what I have. And I am grateful. I am the mistress of my fate, the captain of my soul. Like the Invictus poem by William Ernest Henley that so inspires us all:

Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.

In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.

Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.

It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.             

Well not today. I am crying because of circumstance. I am not beyond this place of wrath and tears. My soul, if I have one, is bruised beyond recognition and shaking in the corner.

It seems that was there was only a paper veil with smiles and brightly coloured illusions of confidence, now shredded by the happy dagger words ‘Exciting News’. I feel the happy announcement as a body blow, leaving me sick and reeling.

Today my circumstance is the master of me. My distress is compounded by the shame of it, but I can’t help it. It comes from a darker place.

It is an expression of the supressed grief for a future denied. It is the anger at realising that I have not moved on as much as I hoped. It is the sadness that I exist in Negative; others’ joy becomes my pain. It is the fading light of hope in the darkness.

I’m sorry, but it hurts.

So.

Very.

Much.