The smell of hospitals in winter, and the feeling that it’s all a lot of oysters, with no pearls

[TRIGGER WARNIG / CAVEAT: I wrote this post as a diary entry back in December 2016, when I had just been diagnosed with, and was receiving treatment for, an ectopic pregnancy. If you’re reading this now, you should know that I suffer from extreme health anxiety, and have a crippling phobia of surgery, both of which made my reactions to this situation much more extreme than might otherwise be the case. So please read with kindness, and be aware that this post may be triggering for people who are pregnant, have experienced pregnancy loss, or who suffer from anxiety related to health and medical procedures. Thanks for understanding. If you’d like to read my ectopic pregnancy story from the start, you’ll find all the posts here.]

Did I ever tell you about my favourite song?

I don’t think I did: because, actually, I don’t think I can really call it my ABSOLUTE favourite – or not all of the time, anyway. I know I’ve talked about this before, but I don’t really DO favourites. Any time someone asks me to name my favourite book/song/movie or whatever, I feel instantly suspicious of that person. I wonder what it must be like to have such certainty about everything: to be able to say, without hesitation, that THIS is the favourite, at all times, and in all situations, and to know that it will never, ever change.

I don’t know what that’s like. I can’t even imagine. I mean, a few weeks ago, I had Lady Gaga on an endless loop, but this week it’s A Long December. This month has been a long December, in fact: I think December always is.

It was a long December (literally) when Terry was diagnosed with kidney failure, and another one the year he had his transplant. I’ve spent a lot of December days, in a lot of hospital rooms, and I have played this song so many times that if it were a record (Hey, remember records?! Anyone? Anyone at all?!), I’d have long since worn it out. Despite this, it has never lost its meaning, or its resonance. I know it’s not the coolest song to love, and that some of you are probably judging me harshly right now, but … the smell of hospitals in winter. It gets me every time.

I’ve thought a lot about those other Decembers this week. It’s funny: sometimes I can go for months on end without even thinking about that time, but these past few weeks, being back in that same hospital, at the same time of year; driving down those same old roads, and feeling that familiar feeling of fear – well, I guess it’s no surprise that it would all start to come back to me, surprisingly vivid, even after all this time.

My last trip to the hospital was on Saturday, for the blood test they do after four days of methotrexate, of which I’m now onto my second dose. The waiting room is dark, windowless, and depressing, despite the feeble attempts to cheer the place up with a lopsided print (It’s an abstract design: I don’t know what other people see, but to me it looks like an ovary about to rupture. Pretty much everything looks like that to me right now, though…) and non-stop music from speakers you can’t switch off. I’m sure music helps many people in these situations, but The First Cut is the Deepest wasn’t exactly what this particular surgery-phobe needed to hear on Saturday morning, and on the day my parents drove us in, my dad grimly informed us that Adele has a lovely voice, but that he never wants to hear it ever again, thanks. But I digress.

On this particular Saturday, they’d put up some Christmas decorations, which took me right back to the day of Terry’s transplant, when we watched a team of workmen install a giant Christmas tree in the hospital foyer, like, “Look, guys! Either you or your loved one might die today, but at least there’s tinsel, hey?” I don’t know about anyone else, but for me there are few things more depressing than Christmas decorations in hospitals, so I was glad when Hotel California finally came to its apparently endless conclusion, and we (“We” being Terry and I: he accompanies me to every appointment because a) he’s a saint and b) I’m very, very close to losing my tiny mind right now, and for once I’m not just being dramatic here…) were ushered into the consulting room where the blood would be taken.

So, here’s a slightly strange, and probably not particularly interesting (but when has that stopped me before, I ask you?) fact about me and health anxiety: despite being phobic in the extreme about general anaesthetic, hospitals and crustaceans (I know that last one has no real relevance here, but as I’m being forced to confront all of my other biggest fears this month, I feel sure a crab encounter must surely be in the post, too. Because why the hell not, right?), I’m actually NOT particularly scared of needles. I mean, I don’t exactly LIKE them, obviously, but it’s the results of the tests that scare me most, not the tests themselves (NOTEABLE EXCEPTION: Ultrasound scans. Swear to God that if they ever try to do that to me again, they’re going to have to catch me first…), so I have the ability to be fairly stoic, and just look away until it’s done. Yay me, right?

Er, not so much, actually.

I WASN’T scared of needles. Not until last Wednesday, when my veins abruptly decided they had no more blood they were willing to surrender, and the process quite literally became like getting blood out of a stone. They… just can’t seem to do it any more: which, in itself, freaks me the hell out. The first time it happened, I ended up almost in tears, saying, “BUT WHY CAN’T YOU GET ANY BLOOD? WHAT DOES IT MEEEEEAAAAN? IS THERE SOMETHING ELSE WRONG WITH ME NOW?” I mean, what did I think the nurse was going to say to that? Did I think she was going to be all, “Well, yes, Amber, this unfortunately means that YOU don’t actually have any blood in you any more. Because you’re dead now.”? I… I think I maybe did.

Needless to say, the nurse did NOT tell me I was a vampire, even although I’m pretty sure I looked like one at the time. (No makeup, guys: not even mascara. THIS IS WHAT YOU’VE DONE TO ME, HEALTH ANXIETY.) She was, in fact, extremely kind and reassuring… and so was the next nurse, who, a few days later, encountered exactly the same issue in trying to get blood out of my cold, empty veins. The unfortunate upshot of this is that what had been one of the (slightly) LESS traumatic, and only moderately painful, elements of this whole saga has now become both hugely traumatic AND very painful. Which makes it even HARDER for Terry to get me from the car to the hospital these days.

On Saturday (Yeah, I’m still only on Saturday here. You’ll probably need a coffee for this. Or maybe a bottle of something stronger, if you have it…), the struggle to get blood was a particularly long and painful one, and once we’d exhausted the veins in my arms, the nurse decided to try my hand instead. During this process, I’d had to move around the room a bit, to give her access to various body parts, and, at this point, found myself in a corner of the room I’d not yet looked at. “You might want to look away, now,” said the nurse, as she raised the needle to my hand, so I turned my head… and found myself staring directly at a giant leather folder with BOOK OF REMEMBRANCE stamped on the front, in gold letters.

“Book of Remembrance?” I thought, as the nurse rooted around in my hand. “Why do they need a Book of Remembrance in a consulting room? Am I ACTUALLY going to die ON THE SPOT?” In a bid to halt the rising panic, I raised my eyes a little further up the wall… where I found a poster inviting me to light a candle for my dead baby. Next to it was one of those posters the NHS enjoy so much, with a title (and I’m paraphrasing here) which said something like: “So, you think you might have an ectopic pregnancy? Here are all the signs it’s about to kill you!” Above that, another poster, this time informing me that ectopic pregnancy is a life threatening condition, and the leading cause of early-pregnancy death in the UK. And at that point, the Christmas decorations and Adele songs suddenly didn’t seem so bad any more.

(I mean, I’m sure there are people who are comforted by Books of Remembrance, and… well, the constant reminder of DEATH… but once this is over, I’m temped to write to the NHS and suggest maybe a bunch of flowers, say, or, I dunno, some pictures of kittens or something?)

The result of all of this is that I can no longer say that I’m not that scared of blood tests. Guys, I am REALLY scared of blood tests now. (Also of that one waiting room in the ERI, Christmas trees and Adele. Sorry, Adele.) Not, however, nearly as much as I’m scared of what the results of those blood tests might show: because once the nurse had finally succeeded in getting blood out of my stone – I mean, my hand – and I’d made my shaky way back to the car, we were faced with a minimum two hour wait for the results: a wait, which, we were told, might be even longer, depending on how busy the lab was, and how much tinsel they still had to hang around all of the “CANCER! IT’S COMING FOR YOU!” posters in the rest of the hospital.

We decided to continue using the ERI for these blood tests, as opposed to our local hospital, purely because the ERI has a much more specialist unit, which is much better equipped to deal with ectopic pregnancies. Despite everything I’ve said about the scariness of the hospital itself (which I’m well aware is largely down to my own wonky brain, and not anything they’re doing wrong), they’ve been truly fantastic. I know I’ve said this before, but I can’t say it enough: I am getting the best possible care from them, and I could not be more grateful for that.

The one problem with the ERI, however, is that it’s a long way from home. I don’t want to go too far from the hospital while we’re waiting for the blood results to come back, in case they need me to come back in for some reason, but remaining in the hospital itself is, for obvious reasons, out of the question, too.

So, what to do? How to kill 2 – 4 hours when you’re so anxious you can barely walk, and so stupid that you left your supply of valium (which, honestly isn’t really cutting it now, anyway…) at home? Last time, we went for coffee and did some shopping. Last time, however, I’d already had the (admittedly terrifying) ultrasound scan which had confirmed that the …. I’m just going to call it a “blockage” here… was starting to break up, and I was riding a wave of “I don’t need surgery” relief.

Now, however, I had no idea what the latest results were going to show, and I. WAS. TERRIFIED. Like, BEYOND terrified. I was so terrified I think I need a new word for terror, but I don’t know what it could be. ‘Amberfied’, maybe? I was Amberfied. And I just COULD NOT seem to calm myself down.

We tried going for coffee, but I felt so sick with nerves I couldn’t eat or drink. We tried doing some of that Christmas shopping that’s continuing to be yet another source of anxiety, but the shops were so crowded I just couldn’t stand it, and at one point I got so panicked I thought I was going to have to lie on the floor (My main ‘panic’ response is to GET SMALL and GET LOW… so I basically curl up in a ball on the floor and I can’t move from there. I started feeling this urge in TK MAXX, and when I tell you they had Kate Spade bags at decidedly NON Kate Spade prices, you will perhaps understand how totally out of my mind with terror I was.) Going to see a movie or something was also a no-go, as we were waiting for THAT phonecall, and therefore couldn’t switch our phones off – not that I think it would have distracted me much even if we could have, mind you.

So we sat in the car and we waited. Then we waited some more. I know I keep using the phrase “worst day of my life” to explain these situations, and I always mean it at the time, but what I’m starting to learn from this experience is that almost EVERY day right now contains a moment which can accurately be described using the word “worst” – and those hours of waiting were – sincerely – some of the longest and most terrifying of my life.

“Promise me that when the phone rings, you won’t get out of the car and lie on the ground?” said Terry, who has to answer these calls on account of the Pavlovian response I now have to the sound of his ringtone. I promised. But when the phone finally rung – almost four hours after the wait began- I had a really, really hard time not doing exactly that.

(But I managed it! Baby steps!)

During that long wait I’d thought a lot about the possible results. I knew the HCG they’re testing for could go up at this stage, and I’d hoped (without actually HAVING much hope, but still) that it would go down. What I had NOT considered, even for a second, however, was the possibility that the level of HCG in my blood might remain EXACTLY THE FREAKING SAME.

So, naturally, that’s what happened.

It wasn’t BAD news, exactly. I mean, it wasn’t GOOD news either, obviously, and it DOES seem to confirm my suspicion that I am ACTUALLY being tortured here. But the hospital said they were unconcerned. They told Terry that when the … blockage… starts to break up (Which is what they’d felt the previous ultrasound indicated was either happening or about to happen), it’s not uncommon to get these kind of “spiky” results, so they didn’t need me to come back in or do anything other than follow the original plan, which was to take more blood on Tuesday (tomorrow), and see what’s happening then. Oh, and they also said they’d like me to try to eat more, which I thought was a nice attempt at humour, because when you’re so anxious you basically ALWAYS feel like you’re about to throw up, eating more is a totally easy thing to do, isn’t it?

So.

When I wrote my last post (which now feels approximately 100 years ago), I said I’d hit rock bottom. When I was told that my blood results showed no change AT ALL, however, it became clear to me that I’d simply been lying on a trapdoor, which had now opened, revealing a new, and previously unsuspected layer beneath. I’m not going to say THIS is rock bottom, because I now know that there’s another level beneath this one… and probably one beneath that, too. The worst part of this whole saga is that every day I think it can’t possibly get any worse… but it somehow always does. Right now I feel like every day is worse than the one before; every phone call brings bad news; every hospital visit feels like the end of the world. AND IT COULD STILL GET WORSE.

They are still not talking about surgery: or not yet. From what they saw on the previous scan, it seems that the methotrexate DOES work, and they can still give me one more shot, if they really need to. What we’ve read (or what Terry has read, rather: I have to stay away from Dr Google in this situation, as he’s proven himself to be no friend of mine…) is that it’s the waiting people really struggle with. In fact, many people end up having surgery that isn’t strictly necessary, purely because they just can’t tolerate this endless waiting process. (Which, believe it or not, some people find even HARDER to deal with than I have…)

I can’t see myself reaching that point – for me, surgery is SUCH a huge fear that it is still very much a last resort – but I do relate to that feeling, because at this point I really feel like this situation is NEVER going to end. Logically, I know it has to end at some point (BUTHOWWILLITENDBUTHOWWILLITEND?): I mean, it’s not like there are 80-year-old women walking around going, ‘Oh yeah, I’ve had an ectopic pregnancy for 50 years now: stubborn little bugger, isn’t it?’), but the wait really does feel endless, every day really does feel even worse than the last, and right now I can see no end in sight. Not even to this blog post, actually, because SERIOUSLY, AMBER: EDIT.

So, that’s where we’re at, really. You’re possibly wondering why I’m bothering to write this here, when I could, after all, save it for my personal diary or whatever, and I want you to know that I’m not doing it for sympathy, or purely to annoy that one person who reads fashion blogs purely for “the escapism” and who is personally affronted by any non-fashion content. (Important side note here: this is not, and never has been a “fashion blog” in the strict sense of that phrase. It’s a personal blog which also covers fashion, and that’s quite an important distinction…) Honestly, you’ve all been amazing – absolutely beyond amazing – but I know that, at this point, there’s really nothing else anyone can say to me, and I don’t want you to feel obliged to try. So please don’t feel you have to comment on this post, or struggle to come up with words of comfort: I know how hard that must be, and if anyone even makes it to the end of this post, I’ll be utterly amazed.

Reading other people’s stories, however, and knowing I’m not the only person who’s gone through this, or who’s struggled so much to deal with it, however, has been one of the few things that has helped me these past few weeks, and I’m hoping that maybe one day my story will do the same for someone else. I mean, maybe not this particular part of it, obviously: because right now I’m still right in the thick of it – I’m dealing with the worst anxiety and the most intense depression I’ve ever experienced, and I honestly don’t know how I’m going to get through tomorrow, and whatever comes after it.

But then I think about those other Decembers. The diagnosis year. The transplant year. I didn’t think I would survive them either: in fact, I was totally and utterly convinced I would not.

But I did. And hopefully, whatever news tomorrow brings, I will survive that, too.

For now, though, it’s just a very long December.