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.


Just getting on with it, as per

Heya, Gentle Readers. Happy New Year. How are you all?

So, Christmas happened. H and I rushed about through floods and storms and howling gales (not kidding), to see the In-Laws in a kind of festive flying leap before doing some serious Christmas Hunkering in our own home. Then we similarly hurled ourselves at my mother’s house for New Year, and now H has gone to work. But matters end not here, because next week we are visiting my Dad for a few days.

Dad is being exceedingly tiresome, forgetting things and then blaming everyone else for whatever it is he forgot, also champion blue-ribbon entries in the Emotional Blackmail And OneDownManShip State Fair, and I don’t want to go. On the other hand, I don’t want to be the daughter who neglects her old man just because he’s being tiresome and forgetful. So I am doing this for me, not him. Because I am a Good Person.

Though all bets are off if he tries to tell me that ‘in the old days people didn’t make such a fuss. Babies died all the time and people just got on with it.’ Direct quote from the dear old man a few years ago.

(a) This is horseshit, as anyone who actually reads anything written prior to 1900 bloody well knows, in that yes alas babies died all the time but it broke their parents’ hearts to fucking bits. Even early miscarriages. Once you know, you know, and you can’t unknow, and saying ‘well you wouldn’t’ve known before they invented home pregnancy tests’ is fucking pointless. And in any case, many women know from implantation, test or no, because hormones, weird. Therefore, in the ‘old days’ more people suffered more heart-break more often, actually, and hopefully their nearest and dearest were less dickish about it. Though, alas, humans=dickish, so…

And b) this is stupid, as I am getting up and dressed every morning, and I shower regularly and go to work and DO my work and occasionally do a bit of house-work and visit my friends and relations and if this is not ‘getting on with it’ then what the fuck is? Or did he actually mean ‘stop troubling me with the fact your woes are at this time considerably more woeful than mine, because my compassion circuits are badly corroded and this may short me out’?

My Dad is not well, and I can’t gauge how unwell he really is, because he veers between shouting ‘I am IRON MAN’ and yomping up a mountain, and whimpering that he’s very very old and dying and old and dying and frail and old and DYING AND OLD. Then he goes off to chop wood. Then he complains of chest pains. Then he has a whiskey or six and drags the dogs out for another 8-mile yomp. He’ll either outlive me or be found conked out mid-yomp within the next two years.

When H and I have performed our oblations on the parental altar, we will set up an appointment with Riverside Clinic. So there’s that.

And because the Universe is like that, an old school-friend died on New Year’s Eve. It’s not fair. It’s so unfair. 2013 was such an angry, destructive, vicious year for so many people, and now this, as its final parting ‘fuck you exceedingly’ gift.


Therapy – in, out, in, out, shake it all about

I blogged before on my therapy. Now I’ve left it, gone into (and out again) couples counselling a stock-take seemed appropriate. Also as May promised in her last post, I have some explaining to do…

Has 18 months of therapy done anything for me? Hard to tell really; if anything it’s certainly double-edged. I’ve woken up my emotional awareness circuits slightly, but not sure really how to deal with what I notice… I’m guessing my now individual ex-therapist would say they needed more time. It does seem to be the way with the Freudian school that slowly does it.

It’s hard to say why it wasn’t working – a number of factors no doubt. I do wonder if the therapist was missing some things I was mentioning, certainly it was rare for them to revisit issues I raised and seemed content to let me lead the subject and content of sessions. Some themes did re-occur naturally, but the lack of structure and resolution on some big ticket items seems rather disappointing looking back on it. May is more angry about this than I am, and inevitably I feel it’s partly my fault for not being more determined and knowing what I wanted out of it. Perhaps I should have taken May’s advice (natch) and learnt more about the therapeutic process, so I could keep better track of what was being covered and not resolved. But then again who was paying who to be the professional? There was a lot of exploring of my childhood, naturally, which was intellectually very interesting, but I’m not sure to what real purposeful end. For some time May has felt that it wasn’t helping me in the here and now (unlike her experience with her therapist, which made me slightly envious and more readily able to give up on mine). This pointless(?) flailing around in my parent’s relationship (which was always part speculation anyway) and the lack of dealing with my relationship was finally getting through to me. Then when my therapist stated they thought some of my issues may be pre-verbal (to do with my mother being very ill when I was born, with a bit of possible post-natal depression to boot), I must admit that I had a WTF moment – what on earth was I supposed to do about that?!?! – and threw a metaphorical towel in. Overall, going into couples counselling was a very convenient exit route without having to confront my therapist.

Has it really been for nought though? While I am by no means fixed, and very prone to frequent lapses into bad behaviour patterns, they say knowledge is power and there are definitely things I have learnt*:

  1. I still have a lot of grief wrapped up, undealt with and partly hidden from myself, within me. The fact this is nearer the surface may not be a totally bad thing. Yes, I am prone to tearing up more readily, especially in the last few weeks with the kids/Christmas thing. I am less likely to hide this from May, but not always good at talking about it if there are other issues in the air or I’m struggling with.
  2. Related to this there was (is) definitely a blockage around sex: – sex makes May pregnant, which ends in pain and misery (our IF issue not being a fertility problem as such, more a staying pregnant issue). May being in pain every month was also not helping, being a regular reminder of previous distresses (which I could then unfortunately use to re-enforce my inurement towards May’s suffering generally – ‘she suffers, she always suffers, it’s not my fault, there’s nothing I can do – I’ll be over here away from the pain’ denial cycle). Sex (and my lack of desire for it) was also one of the primary reasons for going to therapy stated right back at the very start. I brought up the subject of sex with my therapist quite a lot, I think, especially in the last few months when our sex life wasn’t improving, despite lack of pain and risk of pregnancy meaning these issues should no longer be factors. Constantly taking consideration of sex issues back to my childhood, however, did not really help me. I’m sure I have ‘mother issues’ (who doesn’t?) and my father also influenced some of my sexual attitudes in a ‘well I don’t want to be like that’ kind of way that possibly went too far (sorry to be vague, but privacy issues…).
  3. My parent’s relationship is not a good model for me to follow. Part of me thought ‘well they’re not divorced, so it must be OK’, but I can certainly see more issues that I wasn’t aware of previously. May would suggest and point out aspects of their behaviour before, but I’m not sure I was always convinced about the now obvious problems with the way my parents treat each other and those around them. However, that now makes me very sad and I feel powerless to intervene. Going down for just a couple of days before Christmas was really difficult, for the first time. In some ways it was like seeing how I have behaved played out before me, which was… awkward and definitely made me feel ashamed. I think I also blamed May a little, as the therapy was at ‘her bidding’ that has lead to this enlightenment. Once we’d returned home this lead inevitably to me being absorbed in self-pity and ignoring May and acting out some of those very behaviours as a consequence (a little knowledge a dangerous thing writ large – perfect illustration why therapy should equip the subject with tools to deal with it, which doesn’t seem to have happened).
  4. I have control issues. I’ve acknowledged that before, but I don’t think I had realised the extent to which I had wound my whole life, behaviours and attitudes around it. Expressed mainly as episodes of passive aggressive behaviour towards May. Being in control always seems like a good thing, I’ve been praised for my aptitude for being calm and in control. The darker side of this is when I don’t get my way or I’m upset by something completely unrelated and come home with a largely unconscious need to control what happens. This is obviously self-destructive, and has a nasty little sting in the tail too, as being aware of control issues leads to a self-loathing and then more passive-aggressiveness as I resent that feeling of awareness and the self-loathing it led to.
  5. Self deception, lies to myself and possibly even my therapist, won’t have helped. I have just read Allie Brosh’s book Hyperbole and a Half (from the blog of the same name). Some of her descriptions about self deception are scarily real to me (unfortunately I cannot find them on the blog). I have an image of myself being a nice guy, which I successfully perpetuate for most of my interactions. I seem to have taken May’s family and most of you in, but it’s an illusion I can only maintain for a limited time. May has committed (through marriage) to live with me, so gets to see me when I’m tired, stressed, fucked off, stressed, anxious, stressed and sad/depressed. Especially when I cannot handle these emotions or am not even aware of their existence (yes, I can be seriously stressed and not realise it – the power of my denial powers bewilders May), my energy is consumed by them and I turn into a rather selfish and uncaring person. This of course I don’t like, which makes me self-loath and angry and as May is there most of the time unfortunately she gets the brunt of it.
  6. Self punishment issues. Like May, I beat mentally beat myself up quite regularly. My mind has cunningly provided very inconsequential things from my childhood to do this about though, rather than the real issues around my current behaviour and attitudes. This seems to have sheltered me from having to face up to the not so savoury aspects of my character, such as selfishness, arrogance and my need to control. I now have more awareness of this, but again I don’t really know how to deal with it. This has a tendency to spiral me into self-pity/loathing, which makes me behave worse towards May.

I had my last individual session the day before we started with our couples counsellor. When we first met our couples counsellor I was relatively optimistic, for some reason, when he outlined his approach as psycho-analytical. I thought, well I’ve just been through this, so needn’t take too long going through it all again as I know what to highlight from my past and what to say. However, it was not to be (see May’s last post).

May’s counselling sessions have officially finished too, but there is the possibility of a couple of follow-ups and she (May’s therapist) even offered to see us as a couple and/or me individually too, which I find very interesting… other therapists have said it’s not a good idea to see us individually in case suspicions arise about conspiracy between the therapist and one of the individuals… perhaps that only applies if it’s a long-term thing or in the seemingly paranoid inducing psycho-analytical view of things. May certainly seem to get more out of her few sessions, although that may be because she took more to them?

Part of me feels I’ve had quite enough psycho-babble. However, as May said – we’re not happy at the moment. In some ways I have taken/handled the events of last summer badly, although I feel better than I would have had I not done a year of therapy. Nevertheless there is still a large chasm between us and where we each are in dealing with these things. My therapy has not given me an adequate toolkit to deal with/overcome my (lack of) communications issues and we need to find a way of handling 2014, which will have some really big decisions in it (the frozen embryo and probably moving house (buying?) just two of them). Can we find a way of dealing with these together?

*this is not to say that I didn’t have the opportunity to learn these from May in the previous years, but therapy did give me the space to think and talk through these issues with some psychological context and not in the midst of rows**.

** I still need to listen to May more, of course. Love you May 🙂


‘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.