Well, it seems I may have spoken a little too soon with my whole, ‘Everything is fine, normal service will resume shortly, lalala” post from a few days ago.
[Once again, TRIGGER WARNINGS for health anxiety sufferers/pregnant people…]
On Tuesday lunchtime, I headed back to the hospital for what I assumed would be a routine blood test, to confirm that the methotrexate treatment I’d received was still working, and that the levels of HCG (pregnancy hormone) in my blood were continuing to decrease.
You can probably see where this is going, can’t you?
In all honesty, I was a little anxious about this test. That’s what health anxiety does to you, though, so I told myself I was just being silly (and did not, in fact, have the power to predict the future. I mean, if I did, do you think I’d be sitting here in worn-out pyjamas, typing a blog post from my rumpled bed? Hell no…), and did the best to distract myself while we waited for the results to come back.
So we went shopping. I know that probably sounds like a very ‘Amber’ thing to do, but, on top of everything else, I’d started worrying about the fact that we hadn’t even started to THINK about Christmas shopping, let alone actually DO it, so we attempted (unsuccessfully) to track down some gifts, had some coffee and cake (a little more successfully, this time): hell, I even bought myself some nail polish. (Er, a little TOO successfully, if I’m honest: when Terry finally came to find me, he said I looked ‘like a squirrel gathering nuts for the winter…’)
After that, we came home, where I painted my nails, switched off the email auto-responder I’d had on for the past week, replied to 15,000 emails inviting me to events in London, and started to plan next week’s blog content. As I mentioned in my last post, I’m not going to pretend that was I feeling fabulous during any of this, but I was OK – and I was hopeful that I would start to feel more so as the days passed.
Then the phone rang.
It wasn’t my local hospital, calling to say that the HCG levels had gone down again, exactly as expected. It wasn’t even that weird robotic woman who keeps calling to tell me I’ve been in a car accident that wasn’t my fault. No, it was the Edinburgh Royal Infirmary, calling to say that my HCG levels had, in fact, started to RISE again, and that they needed me in first thing next morning for another ultrasound, and further blood tests.
And then I literally died.
OK, I didn’t: it felt a lot like it, though.
I completely lost it. I mean, I’d thought the previous week’s panic attack (the one which landed me an emergency appointment with a doctor, who prescribed the highest dose of valium he could give me, and also advised me to write everything down. Regretting that NOW, aren’t you, Mr Doctor Man?) was the worst thing I’d ever experienced, but even now, we look back on that as the Good Panic Attack. Those were the Good Ol’ Days of Anxiety Attacks: the days when you could pop a few pills and be slightly less hysterical than you were before.
This, though? This was something else entirely. It was like I’d somehow reached the Boss Level of Ultimate Health Anxiety, and I’d lost my kit bag somewhere along the way. I had just one life left, and it seemed I was going to spend it on the office floor (Terry used to think it was funny that I sink to the floor every time the hospital calls: now he’s mostly just wondering how to get mascara out of carpets. Answers on a postcard, please…), rocking back and forth, and… well, howling, basically. Yes, I said howling. I’m… not proud of myself, needless to say. In fact, I think I’d definitely rank it as the #1 Most Embarrassing Moment of My Life, and I once got my period unexpectedly during a school assembly, so…
(You can all tell I’m trying to use humour to try to distract you from The Crazy, right? Just checking…)
The next 12 hours were utterly unbearable. I was completely inconsolable. Valium had long since stopped working by that point, and short of calling the local hospital and having myself committed (And don’t think Terry didn’t consider it…), there was absolutely nothing anyone could say or do to help. There’s absolutely no way to explain this to someone who doesn’t have a full-blown phobia of their own (No, your fear of spiders doesn’t count, unless it’s an actual PHOBIA…): I’ve tried to think of how to do it, but the best I can do is to repeat my previous analogy of being stuck on an airplane that hits really, really bad turbulence – and I guess even that doesn’t really cover it unless you ALSO happen to be frightened of flying. So, to put it another way:
I literally thought I was going to die.
And I’m using the word ‘literal’ in the, er, literal sense here, as opposed to the totally-ironic-God-I’m-such-an-asshole way I usually use it.
I felt sure at this point that there was now something very, very wrong with me. The hospital had warned me that they sometimes do have to give people a second methotrexate shot, but they had also told me (or, at least, I THOUGHT they had: I’m now thinking I may have simply misunderstood this, as I was, not to put too fine a point on it, Completely Effing Crazy at the time…) that I would NOT need to have another ultrasound. This had really comforted me, because here’s another fun result of this whole miscarriage-followed-by-ectopic-pregnancy thing my body does:
I’m now really, really scared of ultrasounds.
On TV, it always looks like such an exciting, happy time. The nurse goes, “Now, this gel will be a little cold!” (Fun fact: no it isn’t, but they still say it anyway…), but that’s the least of the prospective-parents’ problems, because the next thing they know, they’re looking at a blurry photo of a little tiny baby, listening to the heartbeat, and then going home with a photo, which they will pin on the fridge, and then one day show to a disinterested teenager, who will never understand the magic of that moment unless they experience it themselves.
But it doesn’t always work out like that.
I’ve had four ultrasound scans now: in fact, technically I’ve had 7, because at the very early stage I’m scanned at, the abdominal ultrasound doesn’t really work all that well, so they then have to do what’s called a ‘transvaginal probe’. Yes, it is every bit as awful as you’re imagining. And I’ve now just mentioned both periods and probes in a single blog post: I really hope my dad isn’t reading this.
So, as I said, I’ve had numerous scans now, and only one of them (the very first) didn’t end with bad news. Even that first scan, however, was a pretty traumatic experience for me (and the fact that I ended up miscarrying anyway, 5 days later, didn’t exactly help…): an internal probe is invasive, undignified, and, for someone who goes into every single medical test with the absolute conviction that they’re going to get bad news, it’s completely terrifying.
And now I was being told that I would have to do it again.
It wasn’t just that, though. As well as being told I’d have to do the scan(s) again, I was essentially being told that I would have to do EVERYTHING again. All of it. This whole, terrible experience, which I thought had come to an end with Saturday’s better-than-expected blood results, would have to be gone through again. The waiting. The worrying. The spending all your money in the ASOS sale, because HELL GIRL, YOU DESERVE IT AFTER ALL YOU’VE BEEN THROUGH. OK, maybe not that last bit, calm down, Terry. (Also, ASOS doesn’t even HAVE a sale on right now. And the reason they don’t have a sale on is because I ALREADY BOUGHT EVERYTHING.)
(OK, I checked, and they do have 30% off on gifts. Doesn’t count, though.)
Basically, I’d thought I was through the worst of it, but actually, I was right back at the very beginning again. And this time was even worse (for me, I mean: not for a normal person. I should probably have said right at the start of this post that you have to read it with the understanding that these are NOT the ramblings of a normal person you’re reading. Unfortunately.), because last time I’d at least had the hope that the methotrexate treatment would work, and that I would not need surgery. Now, for reasons I couldn’t even begin to understand, but which were almost certainly linked to either a) cancer or b) Voldemort, it seemed the methotrexate had NOT worked, and that I would almost certainly be headed into surgery. Which, as those of you with the patience of saints will remember, is currently ranked as Phobia Number One.
(Just out of interest, Phobia Number Two is crabs, and #3 is people who rub their feet together. I could go on like this for hours, but I’ll stop now.)
(I also dislike Elf on the Shelf, but that’s more of a burning hatred than a phobia, you know?)
I hit rock bottom, basically. No matter how many times Terry tried to assure me this was likely just a routine test, and that the rising HCG could even just be a weird kind of blip, I was so certain that I was going to need surgery that I actually went and packed my hospital bag. Well, I SAY I packed my hospital bag: I’d actually had it mostly packed since the moment I came off birth control, because I was totally convinced, right from the word go, that something like this would happen. This is obviously not the time for “I told you so”, but you know what? I TOLD YOU SO. AND I WAS RIGHT.
I have no idea how I got through the next 12 hours – especially given that those 12 hours lasted AT LEAST 5 years, and that’s a conservative estimate. I’ll just say here that Terry really, truly, deserves a medal, and I honestly don’t know how I can ever thank him. Truly.
The next morning, my parents arrived to drive us to the hospital, partly because Terry was also so strung out now that he didn’t trust himself to drive, and partly because they ALSO deserve many, many medals. By this stage, I had managed to get control of the hysteria, and moved on to simply feeling dead inside, almost as if I’d had the Dementor’s Kiss, and now I would just be a shell of my former self. It was a relief for all of us. (In other news: can you tell I’ve been re-reading the Harry Potter series lately?)
Again, I can’t even hope to explain this to those of you who DON’T have phobias, but to at least attempt to put it in context, I am (technically, at least) 8 weeks pregnant today, and have known about this pregnancy for four: there has NEVER been a point where we thought the pregnancy had a chance of surviving (Not because of my anxiety, this time: even before we knew it was ectopic, the hospital had told us to expect a miscarriage…) , and each of those four weeks has involved hospital visits, scary and invasive tests, and complete and utter terror. Even just getting to the point where I felt I’d overcome my anxiety to the stage where I was even able to contemplate trying to get pregnant was such a huge deal for me: I’d had such high hopes that everything would work out, but instead I felt that things had just gone from bad to worse, and now I was DONE. I had hit rock bottom. I’d used up every last bit of strength and courage I had in me to reach this stage, to get through the miscarriage, and to survive these last few weeks. Now I had to do it all again, and I was basically just like, ‘Yeah, can we NOT, actually?’
I know other people have it far, far worse than I do, and they somehow survive, but in that moment, as we walked into the scan room, and I lay down on the bed, I really couldn’t see any light at the end of the tunnel I’d found myself in. (Literally, I mean: they have to switch off the lights to see the screen, and all I can ever think is that THEY DIDN’T DO THAT IN ‘FRIENDS‘, WHY HAS TV LIED TO ME?) I’d had weeks and weeks of non-stop anxiety, and had been forced to deal with things I’d spent my entire life worrying about, and I just couldn’t do it any more. Which, I think, is the only way I even made it into that room: sometimes the path of least resistance really is the only one open to you, you know?
So, they did the scan, and I was given five pieces of news:
01. They would NOT have to do the ‘probe’ this time, which was good news, as I’d forgotten to wear my special ‘scan skirt’, which means I don’t have to strip from the waist down, and therefore allows me to retain a smidge more dignity when they do… what they have to do. (Other things I’d forgotten to wear: my bra. Whoops.)
02. The ectopic pregnancy was still there. Dammit.
03. It is definitely in the fallopian tube, not the ovary. This is sort-of-good news, as it means that if I DID have to have surgery, they would only have to remove the tube, not the ovary. I don’t know WHY this is good news, because I can’t really imagine what use an ovary is without a tube, but I also can’t imagine ever willingly putting myself through this again, so it’s a moot point, I guess,
04. Although still very much in evidence, the pregnancy had not grown, and did, in fact, show some signs of being on the way out. (Again, there’s not really a sensitive way to put any of this, but if it helps, it is very, very tiny, and had basically not grown since the first few weeks, so it is nothing like you’re possibly imagining. It’s an almost indiscernible clump of cells, really.) This was also good news (Well, as ‘good’ as it gets with this kind of scenario) as while the hospital are obliged to warn me that there’s always a danger of the tube rupturing, the size of the…blockage… makes that very unlikely, meaning that my life is (probably) not at risk. (My sanity, on the other hand…)
05. They would not have to do surgery. Or not right now, anyway. Instead, they would likely administer another shot of methotrexate, which DOES seem to be working, just not quite as quickly as they’d really like. This, of course, was the best news of all, and made my packed hospital bag seem like a bit of an over-reaction, really. At least I’m prepared, though, huh?
First, however, they wanted to take more blood tests, to see what my HCG had decided to do THIS time. This ended up being a bit of a performance as, after weeks of being poked and prodded without any real issue, both of my arms decided simultaneously that THIS would be the day they’d be all, “Nope, not happening: you’ve had the last drop of blood you’ll ever be getting from either of us!”
So THAT was fun.
Eventually, however, my left arm consented to give up the goods (Don’t tell the right arm, but the left is my favourite now…), and we were sent off to wait for the results. This took around 3 hours. Now that I knew surgery was off the table (no pun intended) for now, I was feeling much calmer, so, rather than wait around the hospital, we headed back to the shops (Shopping: it’s better than therapy, isn’t it?), where we had some more coffee and cake, I bought some MORE nail polish (I don’t know why, but I’m having a bit of a Thing with nail polish right now) and we also saw a dog that looked almost exactly like Rubin, only it was the size of a small pony. That has absolutely nothing to do with any of this, by the way: it was just a REALLY cool dog.
Finally, the call came: and this time, the news was good.
The HCG had dropped again: all on its own, and without the hospital having to have done anything at all – other than put me through an entire day of sheer, unadulterated terror, obviously.
It’s possible that the previous day’s blood results WERE “just a blip”. There is always a margin of error with testing, apparently, so who knows, it could have been that. (HAHA, FUNNY FUNNY JOKE, IF SO!) Although the hormone levels were on the way back down again, though, the latest round of tests showed that they were dropping slower than the hospital would like, so their advice was for me to come back in and have another methotrexate shot, just to be ABSOLUTELY sure that things continue in the right direction, without the need for surgery. I was happy to take that advice, because once you’ve had three internal probes, an injection in the butt really ain’t no thang, and also: SURGERY. NO THANKS.
So, that’s what we did. I had the second shot around an hour later, then came home and basically collapsed in a heap on the sofa. This morning I’m feeling a little rough: because the first shot had already gone to work (it basically prevents fast-growing cells from dividing (or something), and obviously that doesn’t just apply to the cells we WANT to stop dividing…), my body is a little more fragile this time around, so I’ve been told to take it easy, avoid housework and heavy lifting, and generally just lie around, being waited on hand and foot. (The hospital may or may NOT have said that last bit, but they DID tell me to rest up and not do any housework. Unfortunately they DIDN’T tell me not to blog, which is why you’re getting yet another novel-length post about my internal organs. Well, what ELSE am I going to do when I’m stuck on the couch all day?)
Right now, then, I’m feeling very relieved to have once again avoided my worst fear, but also very scared that this shot won’t work either, and that I’ll end up under the knife anyway. The hospital have told me this is very unlikely: they’re confident that they got this, but honestly, last week’s ‘yay, everything will be fine now!’ post now seems quite embarrassing to me: it’s now very obvious to me that, regardless of the outcome of this latest shot, it’s going to be a long road back to ‘normality’ – I’m told I may have weeks’ worth of blood tests ahead of me before the hospital will discharge me, and I’m also told that women who have one ectopic pregnancy have a much higher risk of having another one, or being infertile afterwards, so yeah, that.
Anyway! I feel like I should at least attempt to end this post on a positive note, so again, I’m very, very grateful to the staff at the ERI, who seriously could not have done more for me yesterday, and who have been absolutely outstanding in their level of care. On a slightly less positive note, I’m going to have to once again repeat my plea that people not post stories about surgery in the comments, or on social media: you’ve all been absolutely wonderful, and I know you’re trying to help, but anecdotes about people having to have surgery for this (even ones with good outcomes, or saying it wasn’t that bad) are HUGELY triggering for me right now: yes, I know how stupid that sounds, but let’s face it: I just wrote 3,000 words about my fallopian tubes, so I think you all know that by now, don’t you?
[P.S. A big thank you to my friends Ewen and Gillian for the flowers at the top of this post, and to my aunt, uncle and cousins in Canada for the cupcakes!]