Category Archives: The innards

Frolicking in Limbo

Hello, Gentle Readers. Went the week well? Shall I tell you about my week? Of course I shall, it’s why I started the blog – to babble into the void, whether the void liked it or not.

Item – Last weekend I went to stay with Hairy Farmer Lady, who fed me cake in epic quantities, and then ice-cream in epic quantities, and having done that, booze in epic quantities, and then let me rant in epic quantities and took me to the theatre to boot. It was beyond awesome. And I felt, well, I felt wanted. And funny and cute, but above all wanted. Worthwhile. Worth making an effort for. Wanted. Excuse me, I must just attend to a face-leak.

Item – I don’t think H ever consciously meant to make me feel worthless and unwanted. But! People of the World! If your partner continuously complains that Behaviour X makes them feel worthless and unwanted, you have to deal with the motherfucking fact that persisting in Behaviour X sends a very distinct and hard-edged message to your partner that actually, yes, they are not as important to you as Behaviour X. It doesn’t matter if X = having a meths lab in your shed or X = just being obsessed with golf to the point where you are never available to go to Sunday lunches with the In-Laws and run interference. (Caveat, obviously, sometimes, Behaviour X is no big deal and you may feel partner is being a dick about it. Then you have to ask yourself ‘do I want to live with a dick who is less important to me than X?’). But to do something dinosaurish, and to lie to your partner about it, even though your dinosaur is making you behave in a boorish way and your partner is crying about it again, HUGE WARNING WHO’S BEING THE DICK NOW KLAXON.

Item – More limbo, in that my mother is experiencing delays in her finances, which means I am experiencing delays in my mortgage-planning, which means I am still living with H, which is a colossally awkward life experience which no doubt is vastly improving to my character and morals at the expense of my fingernails and sleep-habits.

Item – Living with H does not suck, because we are both being very adult and polite and we are both trying very hard to remember that the situation is fucking awful for both of us. Well, it does suck, but it could suck so very much more. I do remember, I must remember, that H is bearing a burden of his own and it’s galling, chafing and wearying him too.

Item – H does artistic things from time to time. I went to one of these events this week. I had been looking forward to it, you see. H came over to say hello at one point, and when he’d gone back to The Art, the person next to me said ‘oh, is he your husband? You much be so very proud of him!’. ‘Yes,’ I said. Yes. And no. And, oh God, no.

Item – I got into a bit of a panic about moving out, about not being able to move out, about renting instead for a bit, about how I couldn’t really afford to rent unless I shared, about how very much I did not want to share, about money, and was I doing the right thing? Was I? Was I? I went to see my counsellor and flailed at her for a bit. There, there, she said. Baby steps. It’s OK to take baby steps. It’s OK not to know quite what to do. It’s perfectly OK for this all to take ages and ages. If I’m more comfortable sharing living-space with H until I can sort my own place out, even if that takes months, that is OK. As it would be OK if I ran squeaking into the night carrying nothing but my laptop and spare knickers. If stability is very very important to me, that is also OK. If I am phobic about moving house at the best of times, guess what? It’s OK!

Item – Also I am strong and intelligent. It’s a thing people keep saying to me, but when my counsellor says it she means just that, rather than ‘so stop crying because you’re making me uncomfortable’ Thank you, beloved NHS, for this woman and her well-trained kindness and the fact she laughs at my jokes.

Item – I went out again this weekend (see? Frolicking!) with more people who laugh at my jokes and make me feel wanted. So there’s that. Which is good. Which is very good. There is life at the end of the tussle.

Item – And now for a quick bitching – I am baffled by the small, (very small, not you) quantity of people who have attempted to ‘comfort’ me or ‘cheer me up’ by telling me anecdotes about their own lovely children/spouses/four-bedroom houses with gardens. It’s one thing to tell me about children and spouses and houses in a spirit of ‘well, this is what is going on in my life’, because I do actually give a damn or indeed several about my friends and their offspring and belongings. But to offer up a ‘look at my adorable child! My splendid spouse gave me a present! I have walk-in closets!’ anecdote to cheer me up, when I am childless, getting divorced, and soon to be homeless does not strike me as classy.

Item – Oh, yes, Cerazette! Some kind souls have asked about Cerazette and Shark Week (or, Shark Festival Fortnight, as it insisted on becoming). I am still on said pill, I plan to stay on it until I am very elderly and menopausal. I do have a slight ‘issue’ (ho ho ho. Hee hee hee) with spotting, as it comes and goes unpredictably and hangs about for weeks, but it’s light and unobtrusive, by and large. And no periods. No burning pains in the uterus and bladder and cramps in the bowel that go on for most of the month. I’ll take the spotting, ta.


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.


Reassure me, damn it

A few days ago, I started spotting, and I thought absolutely nothing of it, as since I’ve been on Cerazette, every month I spot for a week or so, and it had been a month, more or less, since the last bout of spotting. Since when it escalated, to cramps and red blood on Sunday, the Dire Rear, cramps and a lot more blood on Monday, and today, more Dire Rear, cramps, vicious backache, nausea, dizziness and headaches. Hurrah! I stayed at home, hell, I stayed in bed, and let Bitter McTwisted point out all the ways this wasn’t nearly as bad as my ‘real’ periods and therefore I didn’t deserve a day in bed, while The Positive Thinking Fairy went ‘wheeee! This isn’t as bad as a ‘real’ period! Why are you still in bed?’

So there’s that.

(I had an inkling things were in an ongoing direction of increasing unpleasantness on Tuesday, and made sure I’d got to the end of every single pile in my in-tray. I am such a responsible adult. Which is why all my houseplants are dead).

I was getting used to my schedule of regular spotting. And in fact am now relying on it, because FET, The Maddening, is supposed to kick off when I next start spotting. The regular nature of the spottingness being some kind of indication that my hormone levels are rising and falling in a way that will be appropriate for beginning Extra! Added! Hormones! when I next start spotting. So, naturally, I am convinced this heavier bleeding will mean shenanigans, and ye gods and little fishes only will know when FET, The Maddening, will be commencing to start. Oy vey. Is this a thing? Am I fussbiscuiting?


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.


Parenting, UR doin’ it rong

We went to see my Dad. It was simultaneously awful and liberating.

Awful, because my Dad is still, fuck-and-alas, a galloping narcissist and if the situation isn’t all about him by heck he will make it all about him. We did have a fight. His heartfelt apology, for which I was at first so very grateful and by which I was at first so deeply moved, rapidly turned into a ‘thing’ about his self-awareness and how therefore we didn’t get to mind when he was a tiresome old arse because he always had been and always would be and because he was aware he was a tiresome old arse, it was an endearing quirk rather than brutally rude and cruel to his children, and the fact we’ve all got Serious Issues from is behaviour over the years is… Not a Thing? I guess? Because reasons?

Liberating, because my heart, which has always lagged miles and years behind my head on this, suddenly realised that there is no magic combination of saying the right thing or doing the right thing, at the right time in the right way, that will unlock Parenting Level ‘Unconditional Love’.

Awful, because there were good bits about having this man as a father – the love of words and books, the stories he used to tell, his wit, his humour, his good days when he was delightful and delighted with us – and as soon as you open yourself up to the good bits, you’ve made yourself vulnerable to the bad bits. And if you shield yourself from the bad bits, you’ve cut yourself off from the good bits. This is not a dance I can do well, or at all gracefully.

Liberating, because this is not my problem. I am not my father. There was enough balance and good example in my life to save me from this ugly inheritance, this inability to see people as people, as equals, this inability to empathise, this raging fear that someone else’s gift (brains, knowledge, money, charm) is a direct threat to him and will somehow annihilate him. And that is not me. And does not have to be me.

And then we came home again, and I went and discussed all the above with my counsellor.

It would seem that a life-time of being shamed for having the wrong sort of body/hair/eyesight/attitude/artistic talent*/height/academic aptitude/pubertal development/sized breasts/menstrual problems can leave a girl feeling profoundly inadequate. Being treated as a flaming nuisance and being repeatedly accused of hypochondria and whining every time I was ill or having a bad time with my periods left rather a tiresome selection of psychological scars. And therefore, when it came time to have a baby of my own, with a body I’d been taught was flawed (and its being flawed an act of perverse rebellion on my part), my inability to make a baby was for me a great source of shame – bitter, bitter shame and guilt. My brain knows this is fucking ridiculous. My brain always knew it was fucking ridiculous. I am quite bright, after all. My poor silly heart, which has the IQ of a golden retriever and a similar desire to love all the grownups even when they kick it, needed more time to realise that I am no more ‘flawed’ than anyone else.

All humans have issues, health problems, non-Barbie-dollness, scars, lumps, wonky bits and hormones, and are nevertheless lovely, loveable, wonderful creatures. I have just had bad luck. Not as bad as some people’s obviously. But definitely worse than other people’s. This was not because I brought it on myself, in any way. Why would I? How could I? It’s not even physiologically possible.

I cannot fathom the guilt, shame, embarrassment, and self-loathing that lead my parents to take a child with obvious health problems and frantically alternate between blaming her and insisting nothing was wrong with her rather than, say, take her to a decent gynaecologist and Get That Seen To, Because Poor Kid, It Sucks. But I know I’m not the only woman who has been shamed for having menstrual problems, fertility issues, and miscarriages. And I don’t know what is wrong with our society that this happened and keeps happening, but it needs to stop. And if you have ever tried to dismiss, down-play, shame, or judge a woman over these issues, I hope you get your pubes caught in your zipper and have to be cut free by a paramedic.

*Writing instead of drawing. Yes, my family went there.


‘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.


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!).

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