Category Archives: DVT/PE Yes really.

I read, much of the night, and go south in winter.

APRIL is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.

There have been, eh, delays? Roadblocks? Oafs? in the house-hunting plans. My mother, who is being excellent about the whole thing, is going to share the mortgage with me, but to do so she needs to sort out her financials, which she can’t do because a Third Party is being a dithering twatweasel. We email each other links to listings of possible flats, and she complains about the lack of second bedroom and I complain about the state of the bathroom and that’s about the extent of it.

So H and I are still sharing a flat.

This flat has been my home for 10 years now. Why, yes, Gentle Reader, I feel conflicted. I feel conflicted as hell. Run! Stay! Run! Home! Stay! Run! Run! Run!

I bitterly resent having to leave, having to live on my own, having to do all this by myself without my favourite human at my side. I bitterly resent it. The only thing worse than leaving H and being alone is staying with him, frankly.

That’s not to say H is being appalling. He continues being considerate and polite and relatively easy to share a space with. He always was a good room-mate, mind. He’s just being bloody there, and, of course, because I am nothing if not totally irrational, when he goes away I feel unpleasantly lonely.

(He’s away right now, spending the Easter week with his family. Whereas I am spending Passover eating bitterness, salt tears, and chocolate. My People are Giving Me A Look.)

I went to a large family wedding recently, and spent not nearly as long as I feared but rather more than I wished fending off relations who wanted to know where H was and why H wasn’t… But they weren’t as bad as the Pregnant Cousins Regiment and their cooing and twittering parents. Oy vey, the cooing and twittering, and didn’t I want to hear all about [cousin]’s every twinge, burp and sickie? About as much as I want to repeatedly slam my favourite hand in a waffle-iron, thank you, and please excuse me, I have a lavatory door to stare at until I’m sure everyone is talking to someone else.

(Bloody stupid conversation with one relation who was all ‘oh, when were you in hospital? Oh, in the summer? Oh, yes, I did know that! Your mother said… um. You were really ill, weren’t you? And you lost the baby. Oh. Um. Oh. Yes, I did know that. Um.’

Well fucking quite).

And the wedding vows – oh, Gentle Readers, I made wedding vows. H made wedding vows. People are so bravely foolish, so foolishly brave, to stand up in front of everyone they know and say ‘you. You forever. You and only you, above all things and people’. What if only one of them means it? What if neither of them mean it? What if they actually mean ‘you can’t hold me to this if it stops being fun or easy’?

So I cried. I wonder how many people crying at weddings are doing so because their broken heart is aching under the strain.

I am suffering from absolute burn-out. Dear internets, it’s not you, it’s me, but if you and your loved ones are all alive and not in hospital and no one’s spouse is running away with all their money and a random guitarist with hepatitis, I have nothing comforting or kind to say. Not because you don’t deserve every comfort and kindness, you really do. You really do. I’m just utterly out of both and running on petrol fumes of decent behaviour and I will only let you down if you ask me for them. So let’s not put us in that position, eh? And one day I’ll actually have had a week where someone actually puts me and my needs first for longer than it takes a kettle to boil and I’ll’ve basically refuelled. And then I will sympathise with your colicky baby issues. Poor you. Poor baby.


A sad

I had grand plans to spend the evening cooking and doing laundry. Instead, I spent it eating cheese on toast and watching TV in a weepy heap.

I miss H. It’s horrible. I loved him so much.

I loved him enough to bundle away my writery ambitions and get a proper job, so he didn’t have to feel conflicted about supporting me, and so we could save money – he always wanted a house of his own (neither of us were to know the housing market would go batshit insane. Heigh ho). I didn’t care so much about property, but I couldn’t in all conscience base my plans for lentil-eating garret-dwelling poeting on his earning power. I had to contribute. I got a proper job. (Thank fuck I did [Irony Claxon]).

And then we tried for babies. I swear, I would never have kept on trying so long so hard if H hadn’t been adamant that he also wanted children. Yes, I wanted children very much, I really did, or I wouldn’t’ve gone along with it all. But I wanted my child to have what I never had – a father. A real one, who stayed, and who would do nappies and 3am sheet-changes and colic and maths homework and who would love them and love me and put us first. Unlike my own father. Unlike my step-father.

I thought H was doing what I was doing. Putting us first. Putting our future child, should we finally have one, first. Putting me, if not first, then at least up there with ‘important’ and ‘beloved’.

And he didn’t. Maybe he couldn’t. But then he should’ve told me he couldn’t love me like that before agreeing to marry me. He should’ve told me when he first found he was carrying Velociraptor eggs home in his pocket. He should’ve trusted me. Instead, he took advantage of the fact I trusted him.

I am being unbelievably fucking petty at the moment, because H is slowly getting round to telling his family and close friends about Divorce Because Velociraptors, and they are being supportive of him. Of course they should be, he’s family, and he is clearly very depressed and fucked-up and needs all the support he can get. But – I told you this was petty – my family are all about the ‘you’ll be fine, May! You’re brave and strong and resilient and this will be the making of you!’. While worrying that H will be having a ghastly time.

What about my ghastly time, you bastards? H asked to have a ghastly time, literally asked, taking foolish risks as he did. I did not ask. I felt I’d already had a ghastly time, thank you, quite sufficient for the time being. My baby died. For the tenth time in a row. I nearly died. That was ghastly. Being caught arsing about with Velociraptors is not actually in the same league. And yet I am ‘resilient and fine and fine and this is the best thing ever for me’ and poor H is having a ‘ghastly time’ and needs people to stand by him. The innocent and righteously indignant victim is never as knee-jerk attractive and sympathetic as the repentant sad-eyed kicked-puppy bad boy.

At least no one has said I ought to stand by him. Because fuck that noise.


The Paradise of Fools

So I am living in limbo right now.

I think, I think, with my mother’s help and my savings, I will be able to get a mortgage on a very small flat. My mother, however, is smack in the middle of an insanely large (and gloriously insane) project right now and is communicating mostly 48-hourly text messages saying, basically, ‘thinking of you, speak to you when Project Insanity is over’. I don’t want to start flat-hunting until I know exactly what I can afford. I call this ‘being quite sensible’, but my sense of what is sensible has taken such a smacking it has demagnetised and occasionally points to the Faroe Islands.

The Velociraptor is, I suppose you could say, in a cage in the middle of the kitchen. It’s no longer chewing holes in the marriage/floor joists, but every time I have another quick peek at the damage, I find something else shredded, sagging off its hinges, or barely held together with duct tape and white-wash. And the cage is taking up rather a lot of room. And it’s still in my house.

The thing is, at least one of us is stuck here until the end of May, as that’s how long the lease is for. H and I are being very adult, civilized, and polite to each other. And, vitally, there are two bedrooms, and H is now sleeping in the other one. Technically, I could stay here until the lease runs out. It’s not horrible. It’s just miserable.

It is so miserable. I already miss H so much. Well, I miss the person I thought H was. As I was coming out of the station this evening on my way home, I bumped into H going the other way (he had a thing to go to), and my poor stupid Golden Retriever of a heart leapt up with happiness – it’s my favourite human! There he is! My human! – and I actually trotted over to him, smiling and pleased, to say hi. And put my hand on his arm, and had him smile back at me. And walked home leaking tears because he wasn’t my human after all and I was going to have to leave him soon.

I loved him so.

My H, who brought me tea every morning we woke up in the same building. Who gave me Doctor Who DVDs for birthdays and Christmas. Who would empty and wash out washing-up basins for me when I was vomiting uncontrollably every stupid month. Who would run me a bath if I was tired and cranky of an evening. Who would text me at work to let me know if the trains were running late. Who took on most of the housework uncomplainingly when my chronic pain and constant miscarriages turned me into a sofa-dwelling slug for weeks and weeks on end. My H, my kind, sweet, affectionate H.

And all the time, he had this catastrophic secret.

Back in, I think, November? H and I had an ugly fight, in which, eventually, I broke down in tears and asked him why he had said so few nice things to me since the miscarriage/DVT/PE debacle? He always used to be verbally affectionate, saying he loved me or that I looked cute in that dress or some such lovely remark every few days. And this had stopped but completely. (In fact, the first time I brought it up, a few weeks earlier, the next day H stopped in the middle of the pavement, cupped my face in his hand, gazed upon me with a faint smile for some seconds, and said, I quote, ‘these last couple of years have really aged you.’ Holy fuck, H, what the hell?). Anyway, we had a row, and I, having ranted at length at how yes I did mind his never saying he loved me any more, asked him why he’d stopped? And he answered, very irritably, ‘It’s never a good time.’

There, that there, should have been the enormous great screaming claxon of THIS RELATIONSHIP IS APPROACHING THE DEATH ZONE.

But instead we were hunting for a counsellor and planning an FET (an FET, incidentally, I should be right in the middle of right now this minute) and I was starting to feel optimistic that maybe this would be OK (the marriage, that is, not the FET, because I was not utterly lost to the pink clouds of delusion).

And then I found out about the Velociraptor.


Plan, wait, J? Are we at J now?

Today, H and I went back to the Riverside Clinic, to see about setting up a Frozen Embryo Transfer for Frosticle.

I felt very calm about this. And sensible. And calm. Right up until I was sitting in the waiting room. All those hopeful people, with their brave blank faces.

(Oh, God, and the woman with the toddler – obviously, there was nowhere else for toddler to be while mama got one with making his sibling. Obviously. No one is so fucking oblivious as to take a toddler to a fertility clinic unless they have to, right? Right. Still. And nevertheless. I actually read The Times therefore. I dislike The Times. I am a raging leftie and I don’t give a TUPPENNY DAMN about celebrity affairs and cellulite. But I read it, because I’d forgotten a book and I didn’t want to look at the toddler).

And then Dr George called us into his office and we discussed the FET at length, while he flicked repeatedly through all the letters from my various haematologists.

Plan, therefore:

  1. Start taking prenatal vitamins with folic acid again. Also, take 75mg of aspirin a day for entire duration of shenanigans, starting about now.
  2. Even though I am on Cerazette, I am having regular, if extremely light (spotting, basically) bleeds, about once a month or so. Satsuma is definitely refusing to be suppressed. Irrepressible ovary. I’d say bless, but there were all the times I wanted her to ovulate and she sodding well wouldn’t for months. Anyway, as soon as the next bleed starts, stop taking Cerazette, and call the clinic to arrange a scan.
  3. Start taking Synarel. (We have a bottle of Buserelin in the fridge, left over. Is this the same thing? Or not? Are the dosages different? Should I just shut up being clever and get a bottle of Synarel?).
  4. Between Days 2 and 4, get first of many many scans.
  5. Start taking Progynova tablets (this is oestrogen, yes? Yes. I’ve checked. It is). THEREFORE AND IMPORTANTLY, also start taking TWO (2. Two. TWO) needlefuls a day of Fragmin, so the extra oestrogen doesn’t promptly turn my blood to porridge.
  6. Steroids again.
  7. When Cute Ute’s lining looks good and plumptious, stop taking oestrogen and start ramming progesterone bullets up my various private orifices instead.
  8. Hang on, when do I stop taking the Synarel? *scrabbles through notes, to no purpose*.
  9. Intralipids.
  10. On day seven of the progesterone, thaw out Frosticle and pop it back in.
  11. HOPE LIKE HELL.

You will note no mention of Metformin. Dr George thinks it’s mostly for improving egg quality, really, and not necessary for a FET, and while I know the views on this in the States are vastly different, I personally am pleased, because Metformin makes me feel really disgruntled, and every single time I have taken it I have put weight ON. Yes, ON. I am pretty sure I am one of the minority of people who finds it screws their metabolism up even more, rather than sort it out.

You will also notice we are doing the same old same old protocol – intralipids and steroids and Fragmin – with the addition of aspirin. We are not doing IVIG. We all considered it, but my NK cells, while elevated, are not sky-high, and back in July 2012 while we were being Thoroughly Poked by Dr Expensive, we found that Intralipids alone massively reduced their activity (no idea why H is burbling about IVIG in that post – we didn’t have any results indicating IVIG testing had been done (everything about Dr Expensive’s testing and briefing regarding the tests was confusing and off-pissing, by the way. Everything. Which is why we quit him)).

There are no good theories as to why 6AA died. The higher dose of low molecular weight heparin mentioned above is for me, not Frosticle, and Dr George doesn’t think I could’ve clotted 6AA to death. Though the aspirin is for us both, given The Professor’s recommendation years ago that I take aspirin when pregnant. The steroids and intralipids are definitely all Frosticle’s, as are the cooter-bullets, because ew. We had those bases covered. So, 6AA may have had the right number of chromosomes, and yet still have had DNA of gibberish and codswallop. Maybe all my embryos do. H and I have both been karyotyped and we are both normal (no translocations, balanced or otherwise), but that doesn’t guarantee one or both of us doesn’t have a spontaneous fuck up in the gamete-making process that doesn’t show as a miscount in the chromosomes. And I am 38. My eggs are crappier than those of a 28-year-old and that is Mother Nature for you, the stone-hearted bitch. And it could’ve been just ‘one of those things’. We know so very, very little about conception and early embryonic development. So very, very, very little.

H and I snuck off for coffee before heading back to work, and to have a little think. I had actually started another round of spotting and light bleeding a couple of days ago, but we both decided we did not want to start the sniff-swallow-stab-poke regime today. We’d rather have the extra month. In which I shall take prenatals again and make sure I exercise regularly. And eat my greens. And have a couple more counselling sessions, and warn my boss about the scan regime, and cry and panic and flail about, because this is insane, Gentle Readers. It is nuts. Nuts. How can we possibly put us through this again? And yet, if we don’t, we both know we will regret it. And I can’t face abandoning Frosticle. The poor wee thing will probably die in my uterus, but it will certainly die in a petri dish otherwise. At least Cute Ute’s nice and warm.

P.S. – Cute Ute, the psychotic bitch, decided to make some unintelligible point or other very definite to me, by a sudden outbreak of seriously heavy bleeding with clots this evening. What? Why? I am taking Cerazette, damn it. At least I’m not in pain, she said cheerfully, practically begging Fate to smack her in the teeth for that one.


‘Tis the season. Hi.

Gentle Readers, Season’s Greetings. How have you been? How are you all doing? Me? Oh, fine, fine. It’s a long story. Have a cup of tea. Or coffee. Or cocoa. Or wine. I don’t know what you like. I don’t know what I like. Excuse me, I shall just go and stare into a cupboard for a few minutes.

Anyway (I went for tea. I’m British) anyway, (I see you were serious when you asked how I’d been. In that case, I shall tell you. In Items. Because Items are traditional.

Item – Working from the toes up, my left leg, the one that developed the big fat DVT. How is that? Well, I had a final ultrasound scan of it, during which the sonographer kept a poker face to out-poke all poker faces. Then a week later we saw the haematology consultant (a third one. Consistency being a thing that huge NHS hospitals can’t actually do on the budgets they actually get). I had been somewhat bothered by the way my leg is still more likely to cramp, to get tired, to ache, than my right leg. It was weird and I didn’t like it, and I was somewhat concerned that despite all the walking about and trying to get fit again the stupid thing was not cooperating. And, well, of course it isn’t cooperating. Third Haematologist told me that though my popliteal vein was no longer completely blocked (yay?) the clot hadn’t completely dissolved and had now scarred over. So my left leg will get oxygen starvation if I over-do it, and will ache and swell if I stand about for too long, and is at risk of another socking great clot if I push my luck. Fucking A, man.

Item – Compression socks. I hate them. They have a purpose and their purpose is excellent and my ankle is not swollen on a regular basis with thanks thereunto. They still suck. I still hate them.

Item – Cerazette! Still my bestest friend in the universe. Every few weeks, I spot painlessly for a week. Otherwise, my pelvis is filled with peace, calm, sunshine and dancing rainbow unicorns.

Item – Cerazette! Demon! My hair is falling out. I have a metric fuckton of hair to start with, so it will take a great deal of falling-out-ness before I start to look so much as wispy, let alone Leonardo da Vinci, and yet I am not amused. Not at all. Sodding hormones. On the other hand, I’d rather be spear-bald than spend three weeks out of five in so much pain I can’t really function, so fuck it. I have hats.

Item – Wheat. I ate some. Within 24 hours my oesophagus was so swollen I was having trouble swallowing (and had to go retch a few times when I had not chewed obsessively 27 times before swallowing, as ‘stuck’ is a thing). This is an official food allergy thing, apparently. I also got gut ache and wind and mild runs (trots?). I decided I hate delicious yummy wheat with a passion. Not trying that again. Damn it all to hell.

Item – Trying again. We were waiting for the all clear from the Haematologists (many and varied). The consensus is I will have to be on low molecular weight heparin AND aspirin from conception to six weeks after end-of-pregnancy. Also, I will have to wear stockings on both legs, and will probably be a physical wreck throughout. Hurrah! But, I can try again if I like. So we will go see Riverside Clinic in January, and see what can be done about tucking Frosticle back in me. On the other hand, a fresh IVF cycle? Possibly a really bloody silly idea, as ovarian stimulation/hyperstimulation is in itself a damn fine way of triggering blood-clotting. We shall see. My current feeling is, if Frosticle doesn’t ‘work’, I am getting seven cats and a pet owl and a horse called Horse.

Item – To my fury, Third Haematologist went on about there being no genetic ’cause’ for my thrombophilia, therefore I didn’t technically ‘have’ a thrombophilia, and I rolled my eyes, and what I would like to say is, actually, I don’t have a currently recognised genetic cause that you can test for. I ABSOLUTELY FUCKING DO have a thrombophilia. You fucking idiot.

Item (secondary, diversionary) – I much preferred First Haematologist, who was sympathetic and sensible, and Second Haematologist, who was actually The Doctor slumming it while evading the Family of Blood or somesuch. (I am perfectly serious. He referred to ‘eight of your Earth weeks’ at one point and H got the giggles (yes yes yes, so did I)).

Item – Work. I am back at work full time. It’s fine. I’m coping. Leg is not being so much of an arse as it were to interfere with my day-to-day duties.

Item – Family. Oh my God I have had it up to here with my family. I will no doubt get back to you all on this.

Item – Counselling. My NHS-provided counsellor, who I see once a week, is lovely and wonderful and has made me realise I spend an inordinate amount of time beating the everlovin’ shit out of myself for everything and anything from untidy hair to being a vile antisocial Bitter McTwisted of Doom. If anyone spoke to a friend of mine the way I speak to myself I’d disembowel them. I am practicing being sweet to myself. It is weird and hard. Also, she keeps reminding me, my family’s hang-ups are theirs, not mine, and I don’t need to take them on board at all. Build Team May! If people are not on Team May, skip briskly away into the distance singing ‘la la la’!

Item – Marriage. H and I are not happy. H has dealt with the Summer of You Must Be Fucking Kidding Me, well, badly. I have also dealt with it badly, but H has taken the proverbial biscuit, bless him. Communication has gone to hell. I will let H tell you about it. That is my revenge upon him, ho ho ho. Hi, H! Stage is all yours! So!

Item – Couple-counselling. We tried to find a counsellor. We had an initial visit in which the man would NOT. STOP. TALKING. When I bought up the whole ‘children now seriously unlikely’ thing, he had to stop me there to tell me ‘I didn’t know that’. Which, actually, was the first red flag. A good counsellor does not tell you what you should and should not be thinking about this sort of stuff on the first visit and before he knows any of the medical history apart from ten mother-fucking miscarriages in a row, you absolute 24-carat gold clotheared dickwhistle. And then tried to slut-shame me when I said I had a higher libido than H and the lack of sex and more specifically communication about sex in our marriage was making me sad and angry, by explaining to me as if I was very stupid indeed that in normal marriages, it was normal for both spouses to lose interest and get ‘too’ used to each other. Well then, I’m abnormal, as I haven’t lost interest in H at all, as I just explained, and the issue is the lack of communication, not the lack of sex per se, so sod you very much. And then, he never turned up to our second appointment. He made his excuses the next day via the practice manager. His excuse was not per se stupid, but his not getting in touch himself to grovel just a bit? Was a great fat honking flashing neon sign saying ‘this man is Not The Counsellor For You, Also, Has No Fucking Manners Whatsoever’. So. Start again.

Item – I have a disgusting cold. So there’s that.

Item – Christmas. Every card I write, every Christmas decoration I hang (or get H to hang), every present I buy or plan I make, I drag kicking and screaming from a black, angry, pissy abyss of raging misery. Just so you know. The only thing keeping me going is a) H’s various concerts (it’s a good thing, being married to a musician) and b) the prospect of the Doctor Who Christmas Special.


Not enough tea in all the world

And why are you posting so infrequently, May?

Item – Work. I am still not back up to full-time hours, because I am still tired and weedy and prone to limping and getting all breathless and grumpy. It is so frustrating and miserifying I keep failing to notice that I am better, I am stronger, I can stand and walk citius, altius, fortius!

Item – And this week, I woke up on Monday with a splitting headache and sinuses bicycle-pumped full of rubber cement. I spent all yesterday at home feeling anxious and guilty (and headachey and ill). And then I spent today at home, knitting, and trying to talk myself out of feeling anxious and guilty (and headachey and ill). To my vast irritation, paracetamol doesn’t really work on the headache, but I can’t take NSAIDs because of the fragmin. (Oh, come now, May, you giant wuss, it’s not as if it’s a migraine. Yet).

Item – At the weekend, I went on an outing en famille in honour of my niece Minx’s birthday. Minx and her friends were fine. My mother and sister were… a little difficult to make plans with. And though they were very nice about it, they were clearly bewildered by the fact I did not want to walk back and forth and up and down and to and fro all day long. I was very tired (I have been sleeping so badly), and Mum was startled and concerned to see how very pale I was (it was Halloween. I don’t need no crummy make-up to do ghostly), and yet she was still surprised that I wanted quite a few sit-down breaks. Oh, for the love of…

Item – Ah, yes, the Sleeping Badly. I am the Queen of Insomnia at the moment. I. Do. Not. Sleep.

Item – Matters have not been helped by our landlord, who suddenly offering to raise the rent by holy-fucknuts percent. But, amusingly, not to do any of the numerous little repairs and restorations that the flat rather needs. We are very amused. For a few weeks there, we were also entertaining the jolly notion of a sudden desperate house-hunt over Christmas. H has been negotiating with The Law on his side, so things may be less drastic than that, in the end, now that I’ve already had the stress-induced apoplexy. Keeping in mind this all came on the heels of The Father’s Heart-Attack, The IVF, The Miscarriage, The Embolism, and The Threat of Redundancy.

Item – You know what? Fuck 2013. Fuck it exceedingly.

Item – I saw the NHS counsellor once, and she was very nice, and I am interested in seeing what happens next. She couldn’t see me the next week because reasons, but we have a regular Thursday thing scheduled starting this week. My only twitchery twitched because she wanted to refer me to her hospital’s miscarriage specialist (Which is all very well, but the NHS has so far done something between crap-all and fuck-dickery about my recurrent miscarriages beyond the mopping-up afterwards. They ran all the tests the NHS runs, and then fat-shamed me. It took private consultants to reveal the thrombophilia-despite-no-genetic-reason-for-it and the immune issues. I do not think there is anything this new NHS consultant can do even if he wanted to). There’s something about my current medical situation that is making people leap six feet in the air and run in four directions simultaneously trying to FIND THE ANSWER FIND THE ANSWER OH MY GOD THIS IS TOO WEIRD AND MUST BE MADE BETTER. It’s a very odd change from previous years’ ‘shit happens, you fatty McFatfat fatperson fatzilla. Eat lettuce only and keep trying’. I have cognitive dissonance. But I could do with people just calming their tits a minute and letting this be what it is: A shitstorm. All this constant THERE MUST BE AN ANSWER LET ME SOLVE YOU thing is uncomfortably denialist (it’s not a bad thing because we will solve it and solve it and then it won’t be bad so you can’t be sad because we will solve it!) and very uncomfortably victim-blamey (well, you just haven’t tried XYZ, have you? If you tried XYZ this wouldn’t’ve happened, would it? More fool you!) with a side-order of God-complex (I will save you, puny mortal! Here is my solution from on high! There! Now you are saved! I said now you are saved, damn it! Be saved by my Wisdom!).

Item – Two more weeks of fragmin injections. Then another ultrasound scan of my affected leg, and another visit to the haematologist, to discuss how matters stand, and if there’s any permanent damage and so on. And then, apart from the bastard son of a donkey’s rectum compression socks, the Saga Of Clotting will, let us all cross fingers, be over.

Item – I happened to go past the Riverside Clinic the other day. Our other embryo is frozen in there, waiting. I felt like Gerda seeing Kay trapped in the power of the Snow Queen, unable to rush in and thaw it back to rosy life with my tears. I wasn’t expecting to feel like that, but now that I do, how do I say no to a FET after Christmas? And how would I bear it if the Frosticle didn’t take, or worse, miscarried as well?


Hello, hi, well… um. Hi.

There comes a time when chunks of the brain just shut down in the face of Too Much To Process. There’s the part that is ordering you to grieve (‘Go on then, cry. Feel awful. Cry, damn you! You lost a baby, didn’t you?’) and the part that will not go there (‘But it feels awful! I don’t want to! And there are endless CSI reruns to watch instead!’), and the part that is still being struck amidships by the whole ‘and then I nearly died’ thing, and the part that has decided the whole business is ridiculous and we should just get three cats and an Alpha Romeo Spider, and the part that is nevertheless planning a FET in January.

And – how could I forget? – the part that was dealing with H’s looming redundancy, and thereby putting on a cheerful face of unconcern and trust in a)H’s general excellence and b) the benevolence of the future [Based on what, you absolute lunatic? — Bitter McTwisted]. In the event, H was not made redundant. It was only when he came home at the end of last week announcing he was transferring departments merely, and not being slung out on his ear by Christmas, that I realised just how bloody anxious and, frankly, angry I’d been about the whole thing; and how ready I’d been to march in there and punch H’s various bosses in the collective groin for doing this to him all over again (we had a major redundancy scare a couple of years ago as well, you see).

Which was not helped by the part that has just been told that the rent is going up 20%. Which is all very well, as it hasn’t gone up for several years and the landlord just noticed that every other comparable property in the area costs many many lots. And not at all very well, as H’s pay has been frozen for the past five years and I earn somewhere between diddly and squat. (OK, yes, as a perk I get to be ill for two months solid and not get fired. So there’s that).

We may be moving house next year.

AAAIIIEEEEE.

So, yes, a lot of Being Very Anxious While Quietly Watching Far Too Much Daytime Television was going on.

And that is why I was not writing. I did not want to sit down and look any of it in the eye. For similar reasons, I was staying away from blogs. I did not want to read another word about loss, or pregnancy, or fertility treatments, or adorable children. It was all anxiety-inducing, good news or bad, happy or sad, reminding me of what I had been through and what I had lost alternately, and I decided that actually I was well within my rights to pull the metaphorical duvet over my head and pretend to be a Scotch Egg for as long as I cared to.

By anxiety-inducing, I don’t suppose I need to explain myself to anyone who has ever suffered badly from an anxiety disorder, but to the rest of you I need to say, no. Worse than that. Much worse. It’s like poisoned.

So. I am now bored of being a Scotch Egg. Hello!

And how am I? Let me count the ways:

Item – I went back to work on a part-time basis last week. It is exhausting. I spend a lot of time, by-and-large, being tired, what with the chronic pain issues and occasional bouts of anaemia, but this is something else. I used to be tired, but I could still trot up three flights of stairs or walk two miles across the centre of town without getting out of breath. Now? Nope. Can’t walk for ten minutes without my stupid DVT-affected leg beginning to ache. I go up three flights of stairs slowly, puffing ‘I… think… I… can… I… think… I… can…’. Work is not the problem – I am on ‘limited’ duties and therefore don’t have to do anything particularly strenuous just yet. Commuting is the problem. Commuting is a fetid pile of dingo’s kidneys.

Item – Speaking of chronic pain issues, let me tell you about my new best friend in the entire Universe: Cerazette. This is a progesterone-only pill which prevents ovulation as well as thinning the uterine lining. Some women don’t care for it at all, but, Gentle Readers, I love this pill. Yes, OK, I started spotting after two weeks, and then near the end of the first packet I started bleeding and carried on doing so for two weeks solid. But it was light bleeding. Bleeding containable with regular tampons. And there were, get this, there were no cramps. I was not in pain. Not. In. Pain. I am not in pain. Cute Ute is perfectly comfortable, my bowels are regular and cheerful, and Satsuma is quiet as a wee mousie. [Ticker-tape parade, marching bands, majorettes, and a 24-gun salute].

Item – Meanwhile, after six weeks, my haematologist lowered the dose of Fragmin (these is a kind of low-weight-molecular-Heparin) I am on. I will be spending six weeks on the lower dose, and then we will double-check the clot behind my left knee has gone, and then I can stop injecting myself every evening. My belly is covered in bruises. I thought for a while there I’d found a way to prevent the bruising (as soon as you remove the needle from your flesh, press down hard on the injection site for 30 seconds with your thumb. Do not rub) but it doesn’t always work, alas. And the worst bruises leave hard lumps under the skin which are showing no inclination to go away at all. Heigh ho, fuck and alas.

Item – I do not like my compression socks. They seem a tad loose in the ankle, and they are frankly gigantic in the foot (‘Oh, just tuck it under!’ said the twatwhistle nurse who fitted them for me. This being the same nurse who wanted to know when I was due, and when I, my eyes filling with tears,said I’d actually lost the baby in August, proceeded seamlessly into her ‘Losing Weight Is Good For You!’ perky lecture). The thing is, I have stocky peasant calves and dainty little princess ankles, and I am not a 70-year-old varicose-vein sufferer. Yet. So. Point of socks, to prevent me becoming a 70-year-old varicose-vein sufferer. Onwards.

Item – Mental state: very anxious, insomniac, and sad. I see a therapist on Thursday, courtesy of the NHS. Our local hospital has a counselling service attached to the gynaecology and obstetrics wards, and I ever so qualify for its attentions, according to my GP, who insisted on referring me. Given that my attempts to find a private counsellor ended in a big fat blank because the people I contacted never got back to me, I’m taking it. Not that that stopped the counsellor having to cancel on me once because of ‘bureaucracy’, but she had warned me she might have to, and then called at once to apologise profusely and have a bit of a chat right there and then just to see how I was. (Note to self: stop being polite and cheerful to counsellors. Not helpful).


So what the futility happened?

The WTF appointment with Dr George was over three weeks ago now, since when I have been Refusing To Think About It. You’ll have to excuse me. I had a lot of ‘Holy fuck I nearly died’ to process, which created massive interference with the ‘Shit shit shit shit SHIT I miscarried 6AA’ data stream. Basically, my hard-drive needed serious de-fragging. I think I cobbled together a parallel-processor out of tinfoil and spit – it may burst into flames mid-post – so onwards! Let me see what I can dredge out of the dark backward and abysm of time.

(From semi-educated computer jokes to Shakespeare in one sentence. I rule).

We had emailed Dr George pre-visit, so as not to waste the entire appointment in a ‘previously, on House‘ montage. The first thing he said was ‘I see you’ve been in the wars!’ with a welcoming grin, which instantly dissolved into gloom and he added, solemnly, that actually what we’d been through was horrific, and he was truly sorry. He’s normally a cheerful upbeat sort of chap. I see I defeated him. I felt a complicated cross between vindicated and miserable about that. It’s nice to be taken seriously but not very reassuring to be The One That Makes Doctors Gloomy.

To address the DVT and dramatic pulmonary embolism problem, Dr George agreed that whatever my test results up until now showed (i.e. absolutely bloody nothing that could predispose one to thrombophilia) (apart from a tendency to sodding well clot anyway, so bloody there), I clearly had a severe, pregnancy-related thrombophilia problem. He wanted to wait and see what the Haematologist had to say about it before we did anything else, in case I needed more aggressive treatment than prophylactic doses of Clexane, for my own safety. And in any case, I needed time to recover and make sure there was no lasting heart or lung damage (jolly conversation, this). On the other hand, the Clexane should have been enough to protect 6AA, especially as my troubles began when I stopped taking the Clexane. Which, incidentally, will never ever never happen again – me suddenly stopping anti-coagulants after the end of a pregnancy. Hell no. Dr George was quite firm about that. The thing is, the lack of diagnosed serious causes of thrombophilia had lead everyone, everyone, to believe the clotting was only a threat to my teeny-tiny embryos, and not in the least to me. Hahahahahahah.

And then we turned to the sad demise of 6AA. Who had a perfect set of matched chromosomes, and no business failing to develop at all. Dr George declared that waiting to day 5 and having CGH performed on the survivors had been the right thing to do. To recap, back in July:

  • Thirteen eggs were retrieved during, uh, retrieval. Dr George was pleased about this. It promises well for future IVF, apparently.
  • Nine of those eggs fertilised on being placed in the company of H’s sperm – this is also good, given my age.
  • On day three, we had six embryos that looked worth culturing to day five. So we cultured them to day five.
  • On day five, we had four embryos left to biopsy, one excellent-looking, one reasonable, one a little slow, and one shabby little creature they could only get one cell from to test.
  • Twenty-four hours later, we had the results. Normal 46-chromosomes-in-pairs 6AA and 6BA, one wildly abnormal one (still alive, still growing strongly) which had three trisomies and a monosomy, and the shabby little creature couldn’t yield a result and anyway had conked out overnight. So we transferred 6AA and froze 6BA.
  • Consider, if we’d done a day three transfer as per standard, we’d’ve had a one in three chance of transferring a normal embryo, a one in two chance of transferring a non-implanting dud (and a possible chemical pregnancy, if it’s true embryos do slightly better inside one, as shabby little creature was hatching and looking to implant), and a one in six chance of transferring a badly damaged future miscarriage (best scenario) or stillbirth (horrific worst scenario).
  • Nevertheless, 6AA died anyway.

So why did I miscarry, given the Clexane for clotting and inflammation, the Metformin for wonky blood-sugar, the Prednisolone for my psycho immune system, the Intralipids ditto, the Progesterone pessaries to keep my uterus from shedding? What had prevented a normal embryo from developing normally?

It is possible the clotting issue was the problem, and prevented 6AA from creating a decent placenta. A human embryo spends its first week or so, once it has implanted, house-building rather than developing itself, so the gestational sac and yolk sac grow first, to nourish the embryo while it works on tapping maternal resources via a tiny little proto-placenta, and then and only then gets to work on itself. If placental development had been botched by micro-clots in my uterine capillaries, 6AA would’ve stalled. And in fact, we had a lovely gestational sac and yolk sac and no bloody visible foetal pole.

It is possible my psycho immune system was not sufficiently suppressed after all (I seem to be Queen of borderline or inconclusive test-results and nevertheless violent symptoms) and there were enough NK cells roaming my uterus to attack 6AA’s placental intrusions, with results as above. There’s a further test (expensive, natch) they can do, testing my NK cells against various combinations of Prednisolone, Intralipids and IVIG, to see which mix suppresses the NK cells best, and then use that. We are thinking about that.

A very very unlikely possibility (and Dr George was adamant this was unlikely) was that I simply wasn’t absorbing the progesterone from the pessaries very well. You apparently can’t really test for this as blood levels of progesterone don’t match the uterine levels of progesterone, as the stuff in the pessaries is absorbed by the uterine area primarily. Or should be. My uterus is abnormal, however, what with the adenomyosis. ‘Next time,’ said Dr George, ‘we could use progesterone-in-oil injections instead, just to be sure. They’re a bit of a pain, though.’

And it is possible, if apparently also very unlikely (H and I have both been karyotyped and genetic issues do not seem to run in our typically-non-miscarrying families) 6AA, despite the 46 chromosomes and healthy go-getting attitude, was genetically non-viable on a more subtle level. I don’t know. Nobody knows. There was nothing to test.

We then discussed trying again. Should we ‘bank’ 6BA, our frosticle, and do another fresh cycle to gather up a couple more healthy embryos before I get all perimenopausal? Or transfer the frosticle first and bother with more IVF only if ‘necessary’? H has been rather pro the first option, not least because he always wanted two children, and therefore having a few spare healthy embryos in store and ‘only’ 38 years old, for when I am, oh, 41 say and ‘ready for seconds’, would be sensible. I had been all ‘two kids would be splendid’ up until a couple of years ago, whereupon a combination of ‘I’m too old for this shit’ and ‘I’m too ill for this shit’ and ‘I can’t go through all this that many more times’ put me squarely in ‘one. One would be perfect. One would be a fucking miracle‘ camp. With the proviso that Lord knows how I’d feel about it once I had the Precious One, because I am not stupid.

Dr George was of the opinion that given my clotting issues, we’d want to avoid the oestrogen stimulation of fresh IVF cycles if it wasn’t necessary. He would transfer 6BA first, and then rethink if that ‘doesn’t work out’. This does rather mean H too would have to become more reconciled with the idea of an only child, because if the FET did work, it’d be maybe two years before we’d be up for another IVF, and I’d be 41 and mouldier. Even though the women in my family have late late menopauses and both grandmothers had naturally conceived healthy children in their forties. And would I want to take Cute Ute the Despoiler back into cycling? With a very small child to care for? Remember I call her The Despoiler for more reasons than the recurrent miscarriages.

Anyway, if I am behind any plan, I am behind the FET plan, and see how I feel about a fresh IVF after that. But I am very skeeved about trying again.

Plan, such as it is: Wait and see what Haematologist says. Contingent on her opinion, consider further NK cell testing. Do a FET using recommended anti-coagulants, immuno-suppressants as revealed by test, and progesterone-in-oil rather than pessaries. And see what happens.

To which plans I would only say, why the fuck is everyone being so gung-ho about this? What about me? What about all those miscarriages, including one of a sodding perfect embryo? Why are you all so keen to do this to me again? The hell is wrong with you all, you heartless arseholes?

I’m going back to my bat-cave, and walling myself in.


Thaw

Item – I have reached the unfortunate phase in which the nice, comfortable numbing ice of shock and startlement starts to melt, and I keep accidentally putting my boot through a rotten patch and having to limp about for hours with the Sodden Sock of Uncomfortable Thoughts. So, yeah, welcome to the weepy, irrationally angry, panicking part of the show.

Item – Physical recovery notes: I can walk for fifteen minutes before my leg starts aching. I can even run little errands. However, I still can’t walk very fast, and if I over-do it I feel like Woman Who Has Been Fell-Walking For Seven Hours, rather than Woman Who Went Round The Supermarket Looking For Lemons, Cream, And Gluten-Free Pasta. I had a slight cold, and then another slight cold (or one long cold that paused for a wee rest in the middle), and had quite a few episodes of breathlessness, lightheadedness and once, a near-faint that cheered H up no end. My left leg is not particularly swollen any more, but is covered in visible veins now, so my legs don’t match anymore. Which I don’t really care for. I am also very prone to bad, day-long headaches, three or four days a week. My recovery has slowed right down to a very sluggish crawl. I don’t know if I’m well enough to go back to work next week. H definitely thinks I’m not, which makes me feel weepy and panicky in itself.

Item – Then H was in the wars. He had a nasty abscess, which needed lancing and draining at the A&E (well, it might not have, but the GP panicked), so we had another long dull afternoon waiting about at that Goddamn hospital, and then the young doctor who assessed H insisted in putting a drip cannula into the back of his hand in case he needed surgery on the horrible oozy mess. H hates needles. He really hates needles. He had to leave the room every time I was approached by a nurse bearing tourniquets while I was in hospital. It was in a mahoosive display of loyal solidarity that he used to sit with me for at least a few goes during the IVF shoot ’em up. And there he was, needled, and covered in adhesive tape. When the more senior doctor finally did fight his way free of the operating theatre and come lance this stupid abscess, he did it all with lidocaine jabs. And then took the useless cannula out, ripping nearly all H’s hand-hair out in the process, which I am told hurt more than the needle. Anyway! H has to see a nurse every morning to get the dressing and packing changed (ugh) but it’s healing very cleanly and he has finished his antibiotics now and I swear, he may NOT have any more ailments this year, because between us it is the outer freezing darkness of enough already on matters medical.

Item – So far I am happy with the Cerazette. No bleeding, and, best of all, no endless fucking cramps and bowel spasms. So far fingers crossed touch wood kiss iron spit on the coals etc.

Item – My bloody mad family struck again, in the form of a surprise relation who finally, well into adulthood, tracked us down and said ‘Hi! I’m so-and-so’s child! Yes, while he was married to thingy, the bigamous old goat. How many other kids did you say he had?’ In the event, Surprise Relation was absolutely lovely, but I skipped several family meet-ups despite emotional blackmail because heyo! Not well! Really not well! So there was that.

Item – Yes yes yes I am working on the WTF appointment blog post. I really am. I said I would. It’s very difficult to write, is all. 6AA, the perfect embryo we did so much to keep safe inside me, died anyway. I nearly died. Something is very wrong and everyone talks phlegmatically of trying again with the frozen embryo as soon as my haematologist clears me for pregnancy. I think everyone is stark staring mad with unwarranted optimism.


Frozen over

Hello, Gentle Readers. How are you all? I’m a lot better. Really, much much better. My leg only aches now when I stand or walk for more than five or ten minutes. I even baked a cake today, standing to do all the whisking and mixing, without needing a sit-down in the middle (though I did need a sit-down once the stupid thing was in the oven (it – the cake – looks very untidy indeed. Mary Berry would be ashamed of me)). I am easily tired, but on the plus side, I sleep like I’ve been drugged, for eight to ten hours straight every night. As a life-long insomniac, this is a treat. Ish. When I’m not having complicated and unpleasant anxiety dreams.

As for my emotional state, I am frankly a bit weird at the moment. I am pretty calm, sanguine, cheerful even, if somewhat subdued and untalkative (what do you mean you’d noticed?). I – not consciously – won’t let myself think about miscarriages or trying again or almighty fucking huge pulmonary embolisms. I can feel my thoughts skittering across the surface, like ducks on a frozen pond. I talk about these things, as and when, in a matter-of-fact way with an upper lip stiffer than boiled leather. As evidenced above by the fucking annoying anxiety dreams, there is a whole deep quagmire of grief and fright and rage under there somewhere. No doubt I will thaw and Go Mental at some point. My GP thinks so, and is rather concerned I will try to go back to work too soon and Officially Lose My Shit. I don’t know. Do you know?

Anyway, we spent a few days with my mother, and we visited Hairy Farmers, and then there was the consultation with the Haematologist, and I need to tell you all about the WTF appointment with Dr George at Riverside. I will be back. Meanwhile, I leave you with bullet points:

  • My heart, according to the echocardiogram I had in the last post, is just fine. So yay!
  • I am now on Cerazette, with the approval of Dr George, Doc Tashless the GP, and the Haematologist. Because on blood thinners and not allowed Diclofenac, Menstruating Mays Are Very Very Very Unwelcome.
  • We are benched until Christmas at the earliest. We must make sure I won’t fucking die next time I get pregnant. To which end I gave the hospital another four vials of blood to test for… things. Like Lupus. And shit like that.
  • Holy shitwhistles, the bruising from the Fragmin. My belly looks, as I mentioned on Twitter, like a bowl of stewed prunes and not much custard.
  • My family are bloody mad (and there’s a post in that too!).