*this post includes a vlog at the end so please stick it out!*
The reason this is all happening:
Every day I’m NOT Disordered has so many views from new readers and so, to cater to any newbies, I thought I’d explain why having a smear is even a difficulty for me…
When I was fifteen, someone I had appreciated and who everyone else respected and admired, began hurting me (the ‘hurt’ being defined as sexual abuse and one instance of rape). For legal reasons, I can’t name him or even his career because apparently that would be an identifiable detail; but I can say that he was in a position of power and had a huge amount of control and influence over a massively important part of my life.
The influence of Jade Goody…
The first time I can remember becoming aware of smears was when Jade Goody died in 2009 after her Cervical Cancer spread to other areas of her body… Before Jade’s death, there was a trend in the UK with the decline of smears in women between 25 and 29 years old; but when her diagnosis was publicised, medical authorities reported a surge in smear requests from young women. As a result of this, the government health ministers reviewed England’s NHS policy not to screen for Cervical Cancer until the age of 25, even though it was set to 20 in the rest of the UK – the review didn’t change things though: https://www.nhs.uk/conditions/cervical-screening/when-youll-be-invited/
Smear shaming & why there should be no place for it:
So, even though I was only 18 at the time of Jade’s death, the publicity surrounding it was everywhere – to the point that it was hard to ignore, and hard to remember it wasn’t exactly relevant to me and my age. Ironically – but kind of predictably – even being over two years since the abuse had started and I had been raped, I hadn’t noticed anything in the media about those topics; which meant that whilst everyone was concentrating on the importance of screening for Cervical Cancer, there wasn’t a whole lot out there about why some may struggle to undergo such a procedure.
A lack of publicity and therefore education and awareness has probably been one of the biggest influences on the fact that there are so many people making comments on social media about judgments made around women who don’t have their smears. I thin that the most horrible ones I’ve seen was stating that women who don’t have smears are ‘basically asking for Cancer.’ Now, to me, if someone knows the fact that having a smear could lead to an early diagnosis of Cervical Cancer, and is still struggling to have one; surely that highlights that there must be a blooming good reason why?!
I think that to shame women who are genuinely struggling to have their smear, doesn’t suddenly take away all their reasons not to have one! It doesn’t magically just make them forget! It doesn’t help them in any way; so what exactly is the point of doing it?!
The pre-procedure process:
So, here’s the process I’ve gone through before my first smear:
1. Finding out about the service: I found out that my local NHS Trust: Northumbria Healthcare NHS Foundation Trust, offer the opportunity to have sedation for a smear in extenuating circumstances by sheer chance. I’ve had a history of poly-cystic ovaries and was in A&E after some stomach pain. When I saw the Gynaecologist they suggested doing an internal examination and I said I didn’t feel that psychologically I could do that. She told me: “it’s just like when you have your smear!” And I told her I had never had one; so she asked why and after I replied, she explained that they offer this service for others in such circumstances. Of course this was really encouraging and good news, but I also struggled with the thought that it meant there were so many other women out there who’ve gone through something similar and I saw that the fact that they’ve created this service was just testament to how many women there were.
2. A referral: After finding out about the procedure, I just had to book an appointment with my GP who made the referral for it. Fortunately, I’ve known my GP for around seven years so it meant that all I had to say when I was telling her why I needed to do the smear this way, was “because of what happened to me…” and she knew without asking or checking.
3. The assessment appointment: I think that the assessment was around two or three months after the referral bu I’m not 100% sure on that. And in all honesty, I absolutely dreaded this part of the process because I obviously didn’t know the Gynaecologist so I fully expected and anticipated that I’d have to go into actual detail about why I needed the sedation. The Doctor seemed really lovely straight away though so I felt immediately comfortable with her and thought that perhaps if she did need more information then I probably would’ve been comfortable telling her. As it turned out though, she just confirmed what my GP had put in the referral. The other thing that was decided at the appointment was as I was about to leave the room and it occurred to me to ask whether if they found something suspicious they would test it/remove it whilst they were there because I hated the thought of them having to wake me up and do it all over again. So, the Doctor added ‘possibility of biopsy’ to the consent form I had to sign.
4. Deciding on the anaesthetic/sedation: At the assessment, I explained that I could choose between a lighter sedation where I might be conscious, but have no idea what’s going on, or a full general anaesthetic. My immediate decision was to opt for the lighter one, for three reasons: Firstly, because I still had a bit of concern that a full anaesthetic was a bit of an over-kill for such a very quick procedure. Then, secondly, I’ve obviously had surgeries before and anaesthetics for them, and I’ve always been so sickly afterwards and because of that and my seizures and that I live alone, I have needed to stay in hospital overnight. And thirdly, after a suicide attempt left me on life support, I actually woke up and couldn’t move because it turned out they hadn’t given me enough medication to keep me asleep! That was in 2012 but I still remember how hard it was to lie there with that awareness, feeling the ventilator tube in my throat, feeing the Nurses putting a catheter in, and with my eyes being taped shut I couldn’t even open them! So the only way they realised I was awake was because my pulse went up, and whilst it has never happened again; I’m still terrified that it could. However, when I replied with my choice the Doctor explained that if they did the mild one and it wasn’t enough, they would have to send me home and come back for a general one. So, I opted for that, but ironically I found myself adopting a completely contradictory attitude nearer to the procedure – which I’ll talk about soon!
5. Pre-op assessment: My pre-op assessment took place one month after the assessment appointment and the week before the procedure. It was pretty basic and just involved having my blood pressure, oxygen levels, pulse, weight and height taken and recorded. Then, I had to answer a whole host of questions - and was warned I’d likely have to answer them all over again when I actually went in for the procedure. The majority of them were around allergies, my mediation, any other health concerns, and previous experiences of anaesthetics. I didn’t have to talk about the abuse and rape again.
6. Self-isolation and the Covid swab: For the three days prior to the procedure I had to self-isolate in accordance with the my local hospital’s policies around the coronavirus pandemic and scheduled admissions to hospital. Fortunately, it meant starting the isolation on Tuesday so I was able to still have my support session and Carer in on the Monday as usual; and it helped to maintain some level of continuity and routine. Strangely, even though it’s during the isolation, you have to break it to have a coronavirus test at the hospital within those three days! And because you’re meant to be self-isolating you can’t get public transport so I had to use the Patient Transport Service which instructs you be ready from two hours before your appointment; and that meant having to get up really early! But, I focused on the fact that I had the following day home to sleep and rest before another early start for the actual day of the procedure. The other difficulty with needing the Patient Transport was that they can’t really guarantee when you’ll be picked back up so I ended up waiting three hours after the swab to get back home! But I didn’t want to seem ungrateful because it really saved me a lot of bother with getting taxis and things. Also, if you don’t know by now, the Covid swab I had was the one where you swab the back of your throat and then both nostrils – which made me wretch and sneeze! But otherwise, not a bother!
When disassociation becomes relevant…
During the six months of abuse – and one instance of rape – the majority of my memories from it are of me watching it happening to a poor girl from my safe spot on the ceiling. Now, it doesn’t take a professional to deduce that this was a coping strategy – my brains method of protecting itself from the assumed upset that memories from some other perspective. However, there were two negative consequences from doing this… the first was that it made it extremely hard to describe some details in my Police interviews. The second thing was that it taught my brain how to disassociate and that it helped to use it as a coping mechanism.
So, this is what has led to the contradictory thoughts and feelings I was having around the decision about the anaesthetic which I mentioned earlier... Whilst on the one hand I was grateful for the thought of not knowing what had gone on, I then – on the other hand – over the course of the few days before the procedure, developed the thought that maybe not being aware would be a huge reminder… Maybe it would trigger those memories of all the months that I had spent ‘on the ceiling.’
Because who doesn’t want to be in control of their own health?
That challenge also led to the concern that for some length of time, I would be out of control of my body and what was happening to it. I – once again – wouldn’t have the ability or the power to say ‘no.’ I wouldn’t be capable of stopping anything that was hurting or that was too upsetting.
This, however, quickly became a huge drive and motivation for me to go through with the procedure because I adopted the attitude that for so many years, my physical health was influenced by my abuser/rapist. Yes, I take responsibility for the fact that it was my means of reaction, but really; I wouldn’t have been in a position to have to respond if he hadn’t done what he had! So, all of my self-harm and my four suicide attempts really meant he had a level of control over – very possibly – my actual life. And after fifteen years, I’m finally at the point where it’s like ‘enough is enough!’ I wasn’t going to let him have that chance of me losing my life from them not catching Cervical Cancer early enough.
A contribution to this mindset was the knowledge that he’s going about his life as usual, you know? Like, he’s still working, he’s not the one hurting himself and landing in hospital for days – and on one occasion years – on end! And if anyone should be reaping the consequences of this, it should be him!
The process of the admission:
So, here’s exactly what happened from arriving on the ward to being discharged:
1. Picked up by Patient Transport Service: Once again, I had to be up early – even earlier than the swab appointment! And it was kind of hard getting up when it was still pitch black outside, but also; I had gone to bed really early so I didn’t really struggle to actually wake up! The ‘ambulance’ this time was really fancy and not as clinical with its smart seating and lovely smell!
2. Arriving on the ward: After arriving at the ward and being given a bed on a bay of five beds with three others occupied. Initially, I was worried because I’d already thought that I would end up wanting to be in a private room and be by myself because I imagined that I’d shed at least some tears before and after the procedure. However, I very quickly became convinced that I was wrong! The three ladies who were there were just instantly kind and I felt comforted by the notion that I was actually surrounded by people and not alone. I think that there actually might’ve been more chance of me becoming unsafe if I had been by myself because I probably would’ve felt more surrounded by my thoughts and feelings. Two of the ladies who I was with from being admitted to my discharge, Helen and Margaret were the most lovely women I’ve met – particularly in a hospital! And since they both know of my blog, I wanted to give them a little shout-out!
3. Anaesthetist check-in: The first ‘professional’ I had come see me was the Anaesthetist and he came with a whole host of questions that were pretty well expected e.g. ‘do you have any problems with your lungs?’ ‘Do you have any false teeth?’ – that sort of thing! I was very conscious though, that I literally had a ‘negative’ answer for nearly every question! I mean the big, important bits about my usual medication and previous reactions to anaesthetic (which involved me going into detail about the instance when they hadn’t put me in a deep enough sleep). He was really nice though and made me feel at ease.
4. Gynaecologist check-in: The next professional to come to my bed was the Gynaecologist. She had two other, less senior Doctors with her and one was a man so I felt a bit awkward having to say some of the words and things that we needed to when discussing the procedure in more detail. The Gynaecologist actually said though, that it was up to me whether I wanted more information or whether I just wanted to get it done and not really know anything more. I decided that I wanted to understand it so she explained that because of my history of ovarian cysts, they would do a colposcopy alongside the smear. She thought it a wise move considering how I needed sedation for the smear and so she wanted to ‘cover all the bases’ while they were ‘in there!’ Before they left, I thanked them for being so understanding and validating of the realness of my challenges and struggles – for going to such lengths to accommodate for the impact of my trauma.
5. The immediate aftermath: So, obviously I was under a general anaesthetic for the procedures and therefore I can’t describe any particular actions and the sensations they caused. But, I can tell you how I felt waking up from the sedation… The first thing that hit me was actually an overwhelming nausea! And then the pain came forward and I started to get a bit upset… I mean, I’d like to think everyone knows how open and honest I am, so I won’t lie; the pain after the procedure was pretty much identical to the soreness I experienced after the rape. The other upsetting thing was that my knickers had been removed and I could feel blood around my thighs – another experience I had endured after the rape. I was given an anti-sickness medication and a really strong painkiller and that eased the pain and uncomfortable, triggering emotions so that I was feeling much better when the ward staff came to take me back along to the ward.
6. Coping through the night: I got back to the ward at lunchtime so I could finally eat (I had been instructed to be nil by mouth since the previous evening) and I spent the majority of the rest of the day talking with the two women – I mean, we pretty much told each other our life stories and there were a few jokes and giggles which was light-heartening. I’m definitely someone who finds comfort and benefit from humour – no matter how ‘dark’ the situation; so it really helped to be able to have ‘fun’ with them after going through something that felt really overwhelmingly significant and intense. Unfortunately, though, I spent the majority of the actual night being sick and then I had a seizure (nothing new) and hit my head and my left hand. After it, I ended up being invited into the little office area with a Nurse so that I could cry without the other two ladies in the bay of beds watching and asking if I was ok. You know when you’re really upset that just any kindness from someone feels claustrophobic and almost makes you more upset? It was like that.
7. The x-ray results: The staff decided to x-ray my hand in the morning, even though the pain in it was much better, it was still really swollen. It turned out to have been a good idea because my x-rays showed a fracture in my scaphoid bone (the base of your thumb by your wrist) so I had to be put into a splint and was given a referral into the ‘Fracture Clinic’ who will ring me in the next 48 hours to determine a treatment plan e.g. do I need another x-ray and how long do I need the splint on for etc. Whilst I kind of laughed this off (again my sense of humour trying to help a bad situation), I was also really frustrated because who goes into hospital for a smear and goes home with a broken wrist?! Like, who else could that happen to?!
8. Being discharged: Once my x-ray results were back and I was given instructions about wearing the splint etc, the Nurse Practitioner put my discharge summary together, and the Patient Transport Service collected me and took me home! And pulling up to see my little calico rescue cat sat on the bedroom windowsill looking for me? And knowing my fluffy little mini Lionhead bunny was sitting waiting in the kitchen? Well, I could not have been more grateful for the experience to be over and for me to be home.
Why I’ve written this blog post:
Firstly, I really hope that this post will encourage some people not to judge or shame those women who are struggling to have their smears. Secondly, I hope that it instils hope and courage in those women who are struggling so that they’re able to have these very important tests. And finally, I hope that this post sheds light on the importance of this service and that if it isn’t in other areas, it is considered to be created in them.
Some thank yous…
A huge thanks to my GP for the referral, to Helen and Margaret who made the bat of beds so much less intimidating and scary, to all of the staff on Ward 7 of North Tyneside General Hospital (in particular Joanne, Alison, Michael and two of the Sisters) for their kindness and understanding, to Doctor Johnson for the validation, to the Operating Theatre staff of OR 5 who were so reassuring, to Northumbria Healthcare NHS Foundation Trust for having this service, and to my Mum and one of my best friend’s; Marty, for their unwavering support throughout the entire thing! I couldn’t have done it without you all. It has truly been a team effort!