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 Grieving means that sometimes people experiencing it get emotional angry and withdrawn (and a whole range of other perfectly normal grief responses), and they need support and understanding They don’t need socially imposed secrecy and shame.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.

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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…

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.

Dark days and how much I miss the cat

There have been times when this nasty business has really got me down. If you count my miscarriages (and, of course, I do), then the total bereavements that I have suffered in the past 3 years is an impressive 8. Some were expected, and part of the natural order of things (grandparents – sad, but natural), and my Father in Law (untimely, too soon), the babies and all of the associated hospitalization that went along with that. And then there was the cat.

After two miscarriages, back in October 2012 (the 6th, 12:30 on a sunny Saturday afternoon), there came a knock at the front door. A neighbour asked, “Are your cats in? There’s been an accident.” One cat was in the back garden, but I had not seen her brother since I let him out that morning. My blood ran cold. Of course it was him, and we took his body to the vets for cremation (Vet: “Let me just check for a heartbeat,” Me: “He’s got rigor-mortis.”)

I know he was just a cat, but I felt so damn angry at the universe for taking him away. It won’t take a degree in psychology to work out how much displaced love is re-focused on our furry friends. Never judge the mad cat lady, maybe she suffers from miscarriage.

It took me over a month to emerge from the depths of depression that the loss of Mac plunged me in to. It has been suggested to me that it was a ‘real’ bereavement that finally allowed me to get in touch with the confused and unfulfilled feelings of loss from my miscarriages, and perhaps that’s true.

Grief is a strange thing. I got a new kitten “because I can at least control that.” Whether it’s the next phase of mourning or just the whole shitty lot compounded together, I do feel like a bereavement veteran. It’s not a great place to be.

I feel mostly OK now. Most of the time. I still miss the cat. C’mon, universe. There was no need for that.

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Acronyms and how hospitals work

When you start getting intimately (and I do mean intimately) involved with the NHS, you need to learn a new language of acronyms. And you need to start to get used to not being offended or upset by some of them (ERPC – Evacuation and Removal of the Products of Conception).

I was about to find out about the EPU (Early Pregnancy Unit). After a weekend of little tiny bits of pink spotting (which I described as bleeding at the time… little did I know), I decided to call NHS direct (old version).

The thing about NHS Direct (and I want to point out that they’ve always been very nice when I’ve called) is that as soon as you say the word ‘pregnant’, all roads and flow charts lead to A&E. As far as the script is concerned, when it comes to babies, children and pregnant women, they’d rather be safe than sorry (and rightly so).  Throw in to the equation the twinges of an old shoulder injury, and it’s Red Alert, because shoulder tip pain is one of the signs of an ectopic pregnancy. Very serious, potentially. The problem is, there’s usually nothing that anyone can do in cases of suspected early miscarriage. So, unless you are pumping out volumes of blood or severely cramping (actually, even if this is what’s happening), you can expect to spend a very long time in A&E if you follow the advice of NHS Direct.

So, off we set for our local A&E. We wanted to beat the rush. We see the triage nurse. They don’t deal with early pregnancy there, so we sit in a cubicle for a couple of hours and then they put me in wheelchair, then in to an ambulance and drive me to another hospital to see if they know what to do with me 20 miles up the road. My husband follows on in the car. I’d never been in an ambulance before. How exciting!

This was going to be a very long day.

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Losing my innocence

The statistics tell us that as many as 1 in 4 pregnancies will not succeed, but that knowledge doesn’t make it any easier if miscarriage should happen to you. What you do get is a crash course in the using the NHS (mostly good, occasionally strange, sometimes frustrating – the admin is frequently bonkers).

My story has been going on for almost three years, and it isn’t over yet. I want to tell it in the hope that a) I get it off my chest, and b) share what I have learned in the hope that someone, somewhere might find it useful. Maybe even inspirational. If you’ve found this blog because you’re going through miscarriage, I’m sorry for your loss, and I hope you find something of use here.

So, here’s the first installment.

In November 2011, after one (one!) attempt, I tested negative on a HPT the day before going on holiday. I went on holiday, and experienced a weird, rather spotty period. It didn’t seem to stop after a week, which was a bit odd, but it did eventually wear off, so I forgot about it. Then, a week later, I was playing in an indoor just for fun badminton league when I noticed I was feeling slightly nauseous. We were off out to a birthday party that night in a pub, and I was planning to drink, so I decided to do another HPT just in case. I wasn’t expecting it, but, guess what? It was POSITIVE.

I can’t tell you; I was in shock. My DH was in shock. We immediately drove to Sainsbury’s for a digital HPT which confirmed that I was 2-3 weeks pregnant. We went to the party. I drove. When they got the birthday cake out, I ran to the toilets and threw up. That was the last normal pregnancy related thing that happened to me.

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