[TRIGGER WARNING for health anxiety/ people who are in the early stages of pregnancy. ]

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.

fear less: my ectopic pregnancy and treatmentSo, 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.

31 Comments
  1. Oh, Amber. I couldn’t agree more. When I went through That Thing I Went Through last month (by the way, I REALLY hope that wasn’t triggering – I only realised it might have been, but maybe now you know That can happen and it’s not something terrible? Idk, so sorry if it was though, I wasn’t thinking right which is inexcusable really – I should know better), I only had two days of it before I got my consultant appointment and that felt like a lifetime.

    I’m not so good at the emotional side of things, but I can do practical! If the valium isn’t touching it, then there are other benzodiazepines. I find during bad spikes that switching between Lorazepam and Diazepam (Valium) is really helpful. There’s also a drug that’s actually an antihistamine called Hydroxyzine; I don’t think anything has worked on my anxiety better than that. Or beta blockers – Propranolol is SO great, but I had to stop taking it because it worsened my asthma (I was legit gutted for about a week at the loss of it- I even argued to be allowed to continue it and I’d just sort of deal with all the coughing but my doctor literally lowered her half-moon glasses and just glared at me). So just in case you haven’t (and maybe you have; I don’t want to belittle you), there are others beyond Diazepam if that’s not cutting it anymore.

    1. They’re refusing to give me anything other than valium, unfortunately… I have asked, but while they’ve been very kind, and have shown a lot of consideration towards my health anxiety, all they’re willing to do at the moment is tell me to take more valium. (Part of the issue with me is that when I’m in a medical situation I tend to downplay symptoms in a bid to avoid tests, which makes them think I’m coping better than I am: Terry has actually had to take them aside and say, ‘Look,I know you probably think she’s dealing with this OK but I guarantee the second we’re out of here, she’s going to be hysterical…”) I’m not sure if there’ a medical reason for it (I guess it could be that those other things maybe interfere with the blood results or something?), but, yeah, no dice with anything stronger. Part of the issue is that as we’re so far away from the hospital, I’m mostly having to deal with my GP on the valium issue, and he is quite anti-meds: he believes that he is able to “cure” anxiety with things like music and getting me to watch the end of a stick he waves around. I don’t know, maybe those things would/will help me in the future, but as you probably know, when you’re right in the thick of it, a waving stick just isn’t going to cut it!

      Oh, and don’t worry about triggering – your situation is one of those things I have ALWAYS worried about (I actually get sick with nerves before eye tests for this exact reason), so I know it can happen – I’m just glad to hear it worked out. (Or as much as it EVER works out with HA, obviously – I know all too well that feeling of, ‘Yeah, I know you’ve just told me I’m fine, but I still don’t believe it…’)

  2. Thank you for sharing Amber. I am so glad you do – you could help so many other people who think they are alone in this, so while it is probably very hard to write, it is a brave thing you are doing to share what is happening to you.
    I sincerely hope that tomorrow’s tests show a significant drop in hcg levels and consequently your worry levels. And yes, tell the NHS some sensitivity in poster choices might not go amiss!
    Hugs xxx

  3. I will read these posts for as long as you need to write them. I’m thinking about you and i want to read these updates. We care about you.x

  4. I totally read to the end of it. I cried and I laughed out loud and I got goosebumps and… You’re a really really really good writer, is what I’m saying.

    Fingers crossed for Tuesday!

  5. It is taking its time, but the mess will work and all this nightmare will pass. Through all of this you still manage to use such visual examples that are inadvertently funny, like the trap door – I could actually visualise you falling through it. I hope writing helps you with anxiety. I hope at the next test the HCG levels fall quickly 🙏🙏

  6. Thanks for the update Amber. As a regular reader, I read to the end as we care about you very much and have been wondering how you are. I am still sending best wishes up to Scotland that you will be through this tough time as soon as possible. I’m truly sorry that this is happening to you. I am an older reader and, like many people have gone through some difficult episodes in life, not the same things as you have but other rough times. You are so right to say the bad things will pass and you will find the strength inside you to get through this and move on to happier times. I hope you’ll hang on to that thought and that there will be better news very soon. Xx

  7. I am thinking of you and worrying too so I am waiting for all your posts.
    I wish you a speedy recovery and I hope this December will end and you’ll be able to have some so well-deserved rest…
    A big hug!
    Xxx

  8. You are perfectly normal, and the hcg levels going up and down is normal, and as for getting blood out of a stone, well that happens to me every month and for the last 16 years, so you are definitely far from odd. You will both get through this, it is a short stepping stone onto the next path you will take, and we are all taking it with you both xxxx 💗

  9. Long December is one of my favorite songs, so no judgment. Do what you need to do. I’m pretty sure most of us read your blog because we like you and your writing. Your writing is just as good as ever, I’m just sorry this is what it has to be about. Wishing good things for you and a much better 2017 for all of us. xo

  10. I check back here every day to see how you’re doing and I am always so glad when I see a new post. I originally came to your blog (years ago) because of one specific dress (could you guess it’s green? 🙂 ), but I keep coming back for you, now even more than even before. I wish for you something truly magical for next year, and it’s right around the corner!

  11. Write as much as you like/as is helpful. Lots of us will always read and shoo good vibes in your direction. I have just sent a few off, told them to head straight down the loch, and turn left. I hope they get there. Anxiety is a b*&^*r.

  12. I down play my symptoms too because I’m always afraid they’ll think I’m faking, and I don’t like taking medicine so I downplay my symptoms and then my husband has to be like “well actually it’s like this” and I’m giving him death stares and the doctor is like wtf?

    And needles, I can not do needles, the fear is so great of medical needles that I have to tell them upfront you have to tell my husband if I need a shot and let him break it to me because no doctor has ever managed to handle it as well as he does.

    The no change waiting feeling always seems like it takes an eternity. But the days pass and there will be an end and I hope the blockage leaves soon.

    As for the hellosh Christmas shopping, maybe ask your mum to do it for you? If you don’t want to just toss it aside this year but can not deal with it.

  13. Totally got to the end, don’t have much to say but wanted to leave a message of support. Sending hugs and happy thoughts x

  14. Sending massive numbers of mental hugs your way, Amber, and hoping that your HCG levels start to go down VERY soon! So glad that writing is helping you stay sane – and bless Terry for being so understanding and supportive!

  15. Rather than come up with something comforting to say, I’m just going to see your Adele and raise you the time I sat in a waiting room listening to first “The Drugs Don’t Work” (helpful) and then “Angels” (the UK’s most popular funeral song). Grim.

  16. Thank you for the update. I have found myself thinking of you a lot recently and I wish I had some good words, but all I can do is offer my thoughts. I hope that you are able to make it through today without falling through another trap door.

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