Category Archives: There is a husband

Back she crawls

Hey, Gentle Readers. How are you all? And look, I’m still alive!

Item – Yes, I have gone for a good old gloomy-pants new look around here. Things are suddenly and to my intense disgust very different, and this is the bloggy equivalent of cutting most of my hair off and dyeing the remains Emotional Midnight Ink.

Item – No, there have been no further shocking revelations about my health. It remains as it ever did – endometriosis, PCOS, adenomysosis, allergic to bloody everything.

Item – Actually, it’s the marriage. Which you, dear kind readers, have watched me occasionally vapour and kvetch about right here on this very blog – the communication issues, the sex (lack of) issues, the not-being-on-the-same-page-hang-on-is-this-the-same-book? issues. It turns out you can’t be even so much as in the same library when one person is hiding a rather important thing from the other. And I found out.

Item – Other things I found out these past twelve days:

  • Fainting from shock is actually a real thing that really happens (being me, I of course politely waited until I was all on my own before fainting from shock, and had to get back up again to make my own hot sweet tea. Which I am still irrationally pissed off about).
  • You can miss a person horribly even when they’re sitting the other side of the room from you, eating popcorn and glumly watching the Olympics.
  • You will actually say ‘please don’t speak to me right now or I will hit you with a chair’ and actually, sincerely mean it as a polite warning made out of concern for the other’s health and wellbeing.
  • There are such things as Deal-Breakers. That will break even 20 years of love and 17 years of cohabitation and 9 years of marriage. And will break them all with a clean, hard, irretrievable snap. And the pain will come closer to killing you than even pulmonary embolisms and RPL.
  • That property prices in Britain are fucking insane and I will be forced to mortgage my every living relative for a cupboard with a chemical toilet in the corner.
  • That it will be my cupboard. That I long for it now with the power of a thousand suns.

I can see you, Gentle Readers, practically bouncing on your seats in your eagerness to type ‘but what the hell happened? What did you do? What did H do? WHAT? WHAT?’ And I am going to cheerfully piss you all off by not telling. H, as furious as I am with him, as shattered as my heart is, nevertheless deserves both his privacy and the right to tell his story his way, should he ever want to tell his story.

The night after I Made My Discovery, I dreamt I was painting the walls of our home, but the plaster kept flaking off to reveal what looked like grey-blue dinosaur hide (I don’t have an unconscious. It’s all Captain Obvious in there). So let’s just say H was keeping a velociraptor under the bed, even though I hate velociraptors, am scared of them, and have always said things like ‘Oh, we don’t have velociraptors! We’re not velociraptor people, are we, H?’ and H would say ‘What? Oh, yes. Quite. No velociraptors. May doesn’t care for them.’

And then the velociraptor burst out and bit my leg off.

So, you traitor, you really believed you’d keep
this a secret, this great outrage? Steal away
in silence from my shores? Can nothing hold you back?
Not our love? Not the pledge once sealed with our right hands?
Not even the thought of Dido doomed to a cruel death?

Virgil’s Aeneid, Book IV, translated by Robert Fagles

- See more at: http://www.poets.org/viewmedia.php/prmMID/19807#sthash.DPtFK5vF.dpuf

You have taken the east from me; you have taken the west from me;
you have taken what is before me and what is behind me;
you have taken the moon, you have taken the sun from me;
and my fear is great that you have taken God from me!

Donal Óg, translated by Lady Gregory.

- See more at: http://www.poets.org/viewmedia.php/prmMID/19457#sthash.RJd5MWfD.dpuf


Fussbiscuiting

Yesterday, I left my dear friends in a state of mild panic, as Cute Ute decided Cerazette be damned, she was Cute Ute The Despoiler, Hear Her Roar. HFF commented on our uncanny bad luck in matters reproductive, and there were reasons… whereapon H confessed that he was a bit freaked out and had been all week.

You see, while I was staying at my Dad’s, I forgot to take my pill one night. I realised as soon as I woke up, and took it straight away, and the next one just before bed as usual, and was then back on track hurrah. When H and I finally got home, we were so pleased to have survived the Parental Oblations with only a few scratches, we fell into our own lovely bed with cries of joy and reacquainted ourselves with the boinginess of the mattress.

I think it was about then Satsuma was twinging, but she twinges at changes of diet, changes of weather, and frankly changes of underpants so I ignored her.

This past week, I have handed a cup of half-drunk tea back to H, asking which tea was it supposed to be, because it tasted weirdly metallic. I have felt sick more days than not. I have had an upset in my lower bowel. I was cheerfully putting this all down to eating stupid things I shouldn’t eat at Dad’s (the wine! There was relentless unavoidable wine! In food! I may as well have eaten the wire-wool pan-scrubber, it’d’ve been gentler on the linings).

Then the bleeding and Christing fucknuts vicious back-ache started, and as you know we all collectively freaked out. Because it would be just like Satsuma and Cute Ute to gang up on me and throw all my carefully thought-out decisions about the FET to the winds in a careless rapture of cruelty, while Bitter McTwisted kicked my head in about being a careless, careless, careless little idiot and this is why we couldn’t have nice things.

In my defence, the Cerazette leaflet suggested the pill had to be more than 12 hours late to be ineffective and this one was 8 hours late. To my horror, various frantically googled websites have suggested it need only be 3 hours late to lose effectiveness. Fuckittyfuckfuck.

So I scrabbled about on the bathroom shelves (Good Lord, the collection of empty moisturiser jars I’ve built up) and found a lone lorn remaining pregnancy test. I peed on it this morning, and it came up resolutely negative. Negatively negative with extra negative, which as you know negates the double negative and sets it back to negative again.

Um. Yes. Putting this one down to ‘hormones, they fuck with you. Even on the pill’ (as suggested by Dr Spouse (see yesterday’s post’s comments)) also Cute Ute’s absolutely vile personality.

Or it could’ve been a chemical pregnancy. Oh, who the fuck cares. Either way, it’s Not A Thing and we’re back to waiting and taking folic acid until the official spotting that signals the beginning of FET, The Maddening, in approximately three to four possibly five weeks’ time. Yes? Yes. Righty ho. Nothing to see here. I’m going to get a large drink, mind.


‘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).


Beetroot hummus

Late at night, in bed, in the dark, I am having trouble sleeping. I actually went into town earlier, and came home so tired I can’t catch my breath, and my head is aching. I had a ‘flu jab on Friday, which probably is not helping.

H lies beside me, stroking my shoulder. ‘Did you drink enough water today?’ He asks.

‘Probably not.’

‘You need to look after yourself.’

‘I know,’ I mutter. And I start weeping. Silently at first, but soon I am shuddering with sobs and the tears are running into my ears.

‘Sweetheart,’ says H, ‘Oh, sweetheart…’

‘I used to enjoy looking after myself, though,’ I choke out, as H hands me tissues, ‘When it wasn’t just me I was looking after. All that eating well and drinking plenty… I even used to go to the organic place and get the beetroot hummus and falafels because it was the healthiest gluten-free option left, and I’d sit in the park and I’d enjoy it, because it was healthy and I was looking after 6AA.’ I start crying again. ‘I fucking hate beetroot.’


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.


My art… keeps me sane.

Hiya, Gentle Readers. How have you been? I have been tired. Unbelievably tired. You know when you have ‘flu, and the first day after the fever breaks, you feel so much better, so you get out of bed and have a shower, and by the time you’re rinsing your hair you’re weeping with exhaustion? Like that.

Truthfully, I have been better than that for the past couple of days, but was busy feeling numb and reading fantasy novels.

State-of-May: Apart from The Tired? My leg has been getting noticeably better day by day. I can stand and walk for longer, and the pain is less hellacious and more of a dull ache. My pulse is still too fast for a resting pulse, and coffee makes it so much worse, but I no longer get completely breathless just climbing a flight of stairs. Cute Ute the Despoiler has finally stopped bleeding scarlet and is just spotting in a grouchy sort of way. She is also doing her trademark aching thing she always does for two Goddamn weeks after a period. I hate her and want a hysterectomy, but that’s our basic standard relationship. My belly is covered with vivid 50 pence-sized bruises from the Fragmin jabs, and I may have to violate the innocent virgin flesh of my outer thighs soon, as it is recommended one does not inject too close to an existing bruise. I have finally had a Dead Baby dream, of unprecedented David Lynch-style unpleasantness, so thanks for that, Subconscious.

Scanners!

I meant to tell you about the CT scan I had on the 28th of August, back when we were hanging around the emergency departments of the local hospital, waiting to find out why in heck I couldn’t breathe and talk at the same time. So! At about 9pm the doctor finished fucking with my veins and sent H and I down the corridor to the CT department to sit in the corridor there for a bit. It being summer, I had bare legs and was wearing sandals, so by now my feet were freezing cold. As well as being two different sizes. A technician appeared after a few minutes and sent me off to change into a hospital gown in a cubicle in a corridor full of men of all ages talking earnestly and loudlyabout testicular cancer. I shuffled painfully back past them clutching the back of my gown shut, colder than ever.

The technician then led me into a positively Arctic room, containing a narrow bed on a set of rails poked through a gigantic metal and white plastic doughnut of a thing. He briskly went through the ‘who are you, what is your date of birth?’ rigmarole and ended with ‘is there any chance you might be pregnant?’

‘No, none at all,’ I said.
‘Are you sure? Because this machine uses X-rays and we inject you with radioactive contrast dye and we need you to sign this disclaimer.’
‘I’m absolutely sure.’
‘How can you be so sure?’ he asked, briskly.
‘Because I had a miscarriage last week.’

The technician went a little pale, and became, suddenly, much less brisk and more tender.

I lay down on the bed, and the technician injected something, saline I suppose, into my hard-won cannula to check it was working. It stung, and I winced, and he said something about that being good, as it showed it was working. Then he got me to put my arms over my head, so they poked out the other end of the doughnut. I could not see what he was doing, but there was Fiddling With Cannula Again. He came back round to pat my elbow and tell me that the bed would move in and out of the machine a few times. There would be two injections of dye. I might feel odd hot sensations in my face and abdomen, and taste a metallic taste. Oh, and I might feel as if I’d wet myself. It was only a sensation, and I wasn’t to worry. And then he went off to the little booth. What the fuck?

The great metal and plastic torus over my head began to whirr and click, and you could see a conglomeration of machine parts through the transparent ring start spinning. A very loud voice told me the first injection was about to start. What they didn’t warn me of was that it would HURT LIKE FUCK. I managed to lie still and hold my breath when told to but tears sprang to my eyes. I mean seriously, technician dude, with all the other warnings, a ‘this will hurt like fuck’ would’ve been appreciated. And yes, I did indeed feel a sudden hot rush exactly as if someone had tipped a cup of hot tea onto my crotch. And yea verily, it was weird. And metal in my mouth, and warm flushes in my belly. And the machine roared and whirred and I was motored deeper into it and was beginning to expect the Universe to suddenly blur and tilt and vanish as I shot through a wormhole or something. Just as the pain in my hand was beginning to fade, they warned me the second injection was about to happen, and again the savage burn, and the hot tea in the groin and the swimming sensation.

I have no idea how long it all lasted, but I doubt it was longer than ten minutes. The technician came out to gently liberate me from the dye pump – I saw the size of the syringes and crikey they were big. No wonder that hurt. My hand veins are small and irritable at the best of times, and did I mention I was cold? – and help me sit up. I was despite warnings still slightly surprised to find that I had not in fact pissed myself. He told me to go back to the Clinical Decisions Unit and they’d send the scans along when they’d processed them. These were the scans that showed a large pulmonary embolism, straddling the pulmonary artery just where it splits into two branches, one for each lung.

And when we got back to the CDU my cannula leaked bloodily all over the floor. Hurrah!

To return to yesterday. Yesterday I had been booked in to have an echocardiogram, to check whether last week’s shenanigans had done any damage to my heart. The chances of permanent damage are not high, before you all panic, but, you know, best to check.

H and I ambitiously took the bus, as my leg was so much better. From the bus-stop to the correct part of the enormous hospital is about a 500 yard walk, and I managed it with only one stop to sit for a few minutes. Admittedly, my leg spasmed at the last yard and I needed another urgent sit-down, but I managed it, and I did not get too breathless to talk or so tachycardic I noticed, so yay!

Of course, when we got there, they’d cancelled my appointment. Because when it was made I was an inpatient and the twat who did the discharging on the computer was a twat. I can say this with impunity because the extremely sweet receptionist in cardiology leapt to his feet and rushed into the back offices to sort it out, and came back overflowing with apologies because obviously the appointment should not have been cancelled and he’d see at once what he could do and off he rushed again and five minutes later my appointment had been reinstated and the poor chap,was apologising to me all over again because there’d be a wait and did we want to go get a tea or coffee? I thanked him and said I could see they were busy (waiting room quite full) and we didn’t mind the wait at all, at which point he looked so relieved he nearly popped and pressing his palms together, bowed to me right there in the waiting room. From which I can only assume people had been being dicks to him all morning. And then H went and got me a (decaff, obvs.) cappuccino and I settled down happily with my book for an hour.

The echocardiogram itself was no biggy. I stripped to the waist (tits ahoy!) and lay down on a couch next to that familiar creature, an ultrasound machine. The sonographer lady, poker-faced but perfectly pleasant, attached electrodes to my collarbones and right side, and then had me roll onto my left side ‘for a better view of the heart’. She then jellied up a probe and pressed it to my breast-bone, leaning comfortably over my waist. She also scanned my heart from just under my left breast, which was less comfortable, as she kept digging the probe into breast-flesh to get a better view, and this went on for some time. I got to hear my own heart beating from various angles. From some, it sounded weirdly sloshy and gloingy, like someone playing in a tin bath. It also sounded a little fast to me. I’d never really considered what my resting pulse actually is before. I know I am not very fit, so it won’t be particularly slow, but constantly in the 90s? Reaching the 100s? Me no like. Poker-face said nothing, beyond asking me to roll onto my back again so she could probe around under my ribs for a while and then explore matters via my supra-sternal notch. I did get to see my heart on the monitor, and I can assure you it is a busy little organ and has four chambers and it goes woosha woosha and/or thuddity thuddity and/or slosh-gloing slosh-gloing depending on the angle, but more I cannot tell you. Poker-face handed me lots of paper towels to de-slime my torso with, informed me my consultant would be in touch about results, and once I’d dressed, ushered me firmly out of her domain.

I don’t see the consultant for another week. Ho hum.

I can see why technicians don’t want to discuss tests with patients. The technician doesn’t have the full picture and can’t know if they’re seeing anything clinically significant or not, and it’s rotten to make them responsible for dealing with bad news situations, and anyway, the patient may well get hold of the wrong end of the stick and without all the other information the consultant has it may well be the wrong stick altogether. But it’s fucking frustrating for us. ‘Not knowing’ is a thing I have enormo-huge issues with at the best of times. The whole ‘it’s probably fine’ thing does nothing for me. It never did, and given the quite dramatically inventive ways I manage to fall off the Medical Norm charts, it never bloody will, because in my case ‘probably’ so often means ‘muahahahaha’.

And H! H has actually gone to work today. He has been getting by on a mixture of compassionate leave and working-from-home, and luckily there haven’t been any big or urgent projects to deal with, so he has actually been at my side since the miscarriage proper. We have both been very subdued and not very talkative, H mostly sublimating his feelings in making me tea and buying me all my favourite chocolate bars. It occurs to me that at this rate I am going to turn into crated veal, and the Chocolate Needs To Stop, heart-rending sentence that that is. Poor H. He looks so sad and tired, all the time.


Indignity

I should never have remarked on the behaviour of Cute Ute the Despoiler. Last night, at about three in the bloody Goddamned morning, she woke me with ferocious cramps and a gush of blood and clots. Oh, hurrah.

I eventually woke the (exhausted, half-dead-with-stress) H while fumbling helplessly about for the co-codamol (I was in the wrong room altogether). H found the pills, fetched me a glass of water, and made me up a hot-water-bottle to ease the pain in my lower back, and I fell asleep with his hand resting comfortably on my shoulder. H did not fall asleep again, not for a while. I really need to stop doing that to him.

Anyway, I was rather better this morning (though we have ordered a great many more sanitary pads in our next supermarket delivery (we live in a big big city. We are spoilt)). So I wrestled my way into my anti-embolism compression socks and H took me for a little walk around the local park, where all the conveniently-placed benches are. My leg still hurts like a bastard’s bastard son-of-a-camel, so some of the sitdownathons were about me trying to get my leg up and cussing under my breath as my knee spasmed. I was also surprisingly (no. Not surprisingly. You have a pulmonary embolism, you dumb bitch) weak and out of breath. But H took my blood-pressure and pulse when we got home (he has had a machine for years for his own purposes) and my blood-pressure was ‘excellent’ and pulse only 90, which after the sitting-the-fuck-down somersaults of Tuesday and Wednesday we have decided is acceptable.

But, Gentle Readers, compression socks oh my horsey God. I have to wear these for two fucking years. Every day. All day. Compression socks. You know the devil-octopus socks they stick you in if you’re immobilised by surgery? More so. These are not prevention devices, they are medical devices to treat existing DVT. And by ‘eck, but they are devices. The Haematology Nurse warned me I wouldn’t be able to tolerate them right away when she first handed them to me on Wednesday, because of the emming-effing pain I was already in. I managed to get them on for a few hours yesterday, and my poor leg felt like a boa-constrictor was slowly squeezing it to mince. They’re not so bad today, but oh, the pressure. I am under such pressure. Ugh.

I am only grateful this pair are green, and not dead-leg-beige.

To do -

  • GP Monday, to say thank you for taking my whiny leg-cramps seriously, please can I have a spare pair or two of compression socks, and now I need a new improved sick-note for work.
  • Contact work. Explain. Holy crap on a cracker, explain.
  • WTF appointment with Dr George on Tuesday.
  • Make appointment with Riverside’s counsellors. Because sheesh.
  • Echocardiogram Wednesday.
  • Haematology consult on the 12th.
  • Have nervous breakdown.

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