10. Meeting My Surgeon

A letter arrived to let me know the appointment time I would be meeting with my surgeon. I rang my Mum to let her know. She said she would fly out the night before. We didn’t know when my operation would be so we made it a one way trip.

On 31st October I went with Rosie to pick my Mum up from Manchester Airport. It was strange seeing her. It made everything very real all of a sudden. The next day Mum and I went for a walk round Digley Reservior. It was good to have a walk and a chat and it calmed me down a bit before the appointment. A beautiful fresh 1st November. I would’ve liked to have been on that plane going anywhere but the hospital.

The drive to the hospital was a very quiet journey. I had grown used to Rosie jabbering away beside me while I was the nervous one… Mum seemed far more nervous than I was, on the outside anyway.

We were reasonably early so we went to the cafe and got a tea… when it was time we headed round to the Macmillan unit. We waited and waited and waited. My heart was in my mouth. I didn’t know what to think. Maybe the results would come back clear and there would be no need for surgery and this was all a big waste of time. Maybe the results would come back and not be clear, maybe I would need more extensive surgery, maybe I would need further treatment. Maybe, maybe, maybe…

I couldn’t concentrate on my book. Over the last few months I’ve found that the Macmillan Unit waiting room is a strange place to be in any hospital. There are such a wide range of people sitting waiting. Different colours, different ages, different sexes, people at different stages of their cancer journey. I have found in most waiting rooms I am usually the youngest person there, who is a patient anyway.

It was after five o’clock before we managed to get seen. It had been a busy afternoon. I can’t imagine being that doctor. The one who has to sit all afternoon and give people bad news/good news/no news. The meeting with my surgeon was all I had been waiting for for two weeks. I had no clue about anything after this appointment. Christmas was coming up and everyone was chatting away about plans. I had no clue. I didn’t know where I’d be, what country I’d be in, how healthy I’d be. Everything was up in the air.

We were led into the appointment room, my key worker was there too. I introduced my mum. My doctor seemed quite stern, he didn’t feel like a warm people person. The news was that the MRI and X-Ray had come back clear!

HUGE SIGH OF RELIEF!

He did an examination. All seemed to be well.

Did you know that doctors always apologise when they are about to put something up your doot? “I’m sorry, this is going to be cold.” “I’m sorry, I’ll be as quick as I can.” “I’m sorry, this is going to hurt.”

I feel like it’s code for “I’m sorry, I really don’t want to be in your vagina.” You know what mate… I don’t particularly want you to be up there either but hey needs must. I hate the apologising because it makes me feel like I have to be the one to make the situation feel comfortable. “That’s fine, don’t worry. I’m used to it by now. Ha ha ha” … boke.

Annnnyway… I digress.

My surgeon wasn’t necessarily an overly friendly people person. He was pretty abrupt and straight to the point but I was hoping that meant he was ace at ridding cancer from people’s bodies and that was a trade off I was willing to take.

He started to tell me my options.

Option 1 – A Radical Hysterectomy

Yes, I balked at this too. This had never been mentioned at my diagnosis. I’d gone from turning 30 and having my life in front of me including the option of having a family to being offered a RADICAL hysterectomy!?!?! This would mean no kids and early menopause. No thanks! Thankfully he kept suggesting options.

Ha ha! I just googled a radical hysterectomy so I could tell you more specifically what it would entail. It states :-

“Radical hysterectomy is an operation done to treat some cancers of the cervix. The surgeon takes out the uterus and the ligaments (tissue fibres) that hold it in place. The cervix and an inch or 2 of the vagina around the cervix are also removed.”

and below that it says…

Surgery Can Affect a Woman’s Sex Life – American Cancer Society

No shit! Thanks for your insight American Cancer Society. And there’s me thinking that having part of your vagina removed would make you feel really up for it… *eye roll* The worst thing about that article (if anyone is interested in reading it) is the fact they feel happy saying “This has not been studied a great deal.” Yes, that and the majority of stuff connected to and affecting women’s health. 

Option 2 : Radical Tracelectomy

“A radical trachelectomy is surgery to remove the cervix, the upper part of the vagina and lymph nodes in the pelvis.”

This would mean I would technically still be able to have children but there is a high risk of miscarriage or early labour and I’d need to have a stitch in place to keep the uterus closed to encourage the baby to stay where it was meant to.

Option 3 : Cold Knife Cone Biopsy and a Laparoscopic Lymphadenectomy

“A cone biopsy is surgery to remove a sample of abnormal tissue from the cervix.”

Well thanks internet, the many descriptions you’ve provided of a cone biopsy make it sound like a piece of piss. I can confirm that it definitely isn’t/wasn’t.

This option would be a cone biopsy done with a scalpel and the removal of my pelvic lymph nodes with key hole surgery. This option would also make giving birth complicated and increase the risk of miscarriage and early labour but it was the least invasive of my three options. Removing my pelvic lymph nodes would mean they could be tested to see if that cancer had spread and would also decrease the possibility of the cancer spreading in the future.

So with very little deliberation, and also because it had been the suggestion of my AWESOME consultant who had removed my tumour in the first place, I won myself Option 3.

I suppose I should mention Option 4 which was to do nothing. I was keen for that option but it would mean I wouldn’t know whether the cancer had spread to my lymph nodes or not, it would also mean I would not know if there was cancer there that had been missed.

“Are you sure?” asked my surgeon.

“Yes.” (I was far from sure… but you fake it till you make it.)

“Right, well how does Monday morning sound?” This was Wednesday evening. Monday was soon. Very, very soon. SHIT!!!!!

“Um… yes?”

“OK, great. You can go to Leeds for your pre-op checks on Friday ready for first thing Monday morning. You can stay over at the hospital hotel on Sunday night so you’re there on time.”

“Yeah, sure.”

“Your key worker will give you the rest of the details on the way out. Nice to meet you. See you on Monday.”

“Thank you. Um… yeah, see you Monday.”

FUUUUUCK!

Over and out,

Steph x

Advertisements

9. MRI and Xray

The night before my MRI and X-Ray I was bricking it. Rosie and I went to my favourite restaurant for dinner (it’s The Catch in Holmfirth by the way). It was a much needed distraction and well who can say no to a Rhubarb and Custard gin?!

We bumped into two of my dear friends and I once again had the awkward situation of telling them what was going on in person. This in person shit is HARD! It involved a few sobs, awkward hugs and another gin. But we all got through it and I felt the better for it. It was great to know the love and care other people had for me, the support was very much needed and appreciated!

The next day I got up reasonably early and got dressed. What does one wear to an MRI scan? Well I was told I couldn’t wear metal… which limits your options… but I’m not one for doing as I’m told so I decided to wear my period table leggings! I went into that MRI wearing ALL the metal! Boom!

Rosie once again accompanied me. I was starting to not like trips to the hospital. After the diagnosis at my last hospital visit I think I had a fairly good reason.

We arrived nice and early, I didn’t have to wait very long before a nurse came and found me. She took blood and maybe put in a cannula (I’m wracking my brains and I can’t remember) and explained what was going to happen.

After a fairly long wait I was led into the MRI room… the machine felt very big but not scary. I hopped onto the bed and lay down. I was given a button to press if I needed anything and some (non magnetic) headphones which played the radio. I was kind of excited as I was being moved into the machine. It felt like some sort of space craft. When I was in place I was told to stay extremely still and to relax as much as I could.

The machine was SO loud. There really was no point having the music because I couldn’t hear it. I could barely hear myself think. Some of the noises were almost relaxing, they  had a rhythm to focus on and lulled you into a sense of security and other noises were jarring and piercing and cut right through you, like an apocalyptic air raid siren. It was rather hard to stay relaxed during that…

I’m not good at staying still at the best of times but lying there trying to stay extremely still for well over 20 mins was like a personal form of torture. It didn’t help that as the MRI was focused over my pelvis it heated up my nether regions so it felt like I’d wet myself. It took a good few minutes after getting out of the machine and patting myself down a few times over to realise, thankfully, that I actually hadn’t.

It was a painless experience and I’m not one to get scared at things like that but it was definitely unnerving. I can definitely understand how people can get scared and need medication to calm them down. I’ll not be rushing to get an MRI done again any time soon!

I was then sent upstairs to get my x-ray. Rosie and I waited for what felt like FOREVER! There was a problem with the machines and the computer system they ran on so queues were getting steadily longer and longer. I was finally lead into a little cubicle area where I had to change out of my top and into a strange robe that didn’t want to do up or stay on however I tried to tie it. The height of hospital fashion. I sat and waited for quite a long time in my wee cubicle before I was ushered into the x-ray room. I was told to stand with my chest against the machine and in a few clicks we were done. Long waits for an extremely quick and painless procedure.

Had the cancer spread? Had they got it all? When was my surgery going to be? Would I need further treatment?

Now I had to wait.

Waiting is always the hardest part!

Steph x

8. After The Diagnosis (iii)

I had a free house after returning from Scarborough. It was probably the best thing I could’ve asked for. Space to process everything that was going on in my head.

I spoke to my Mum and Dad on the phone A LOT over the next few days. It really helped. Straight after receiving my diagnosis I really started to listen to my body. Automatically I stopped wanting to eat certain things. I’m very lucky as I practically have my own personal dietician – My Mum! She has read almost every book under the sun on food and has always been far a head of the times regarding what she was eating and feeding her family. I asked her what I should be eating. I think she was a little wary at first. This was a huge turn around as usually I’m rolling my eyes, shaking my head and sticking my fingers in my ears trying not to listen or take in any food advice she’d be giving me.

I pretty much became a sugar free, lactose free, gluten free, pescatarian over night. (I LOVE fish. What can I say?! I just can’t give it up…)

I will talk more about food at a later date, I’ve become pretty passionate about it. It’s been a huge part of my journey and I can honestly report I am so much healthier now than I was before my diagnosis, even when I was “trying” to be healthy and exercising lots and training for things. There really is no comparison.

I’m still trying to figure it all out. It’s a journey all of it’s own, but I can feel it in my bones… I’m being led down the path of healthy, wholesome food and I’m excited about seeing where it leads me.

My advice is, listen to your body. Do what feels right for you because no one knows better than you do, don’t be stubborn, try new things and try not to get in your own way.

So after eating better I was feeling a little better but wow my heart still hurt. I was carrying such a huge sadness around with me. It was hard to shift.

I went to visit a friend, okay okay, an old flame, in Leeds. Once again it was hard talking about it in person to someone I cared a great deal about. The fact he was a medical professional and wanted to know lots about it didn’t help either. I didn’t have any substantial results to tell him and I felt slightly overwhelmed by it all.

Sex. Now that’s not the next word you were expecting next was it? You’ve already read all about my doot and frankly it only gets worse… so if you can’t handle reading a little bit about my sex life then this blog is definitely not for you so just skip the next part.

At this stage I had had my LLETZ procedure just over three weeks before. Medical advice is not to use tampons, go swimming, have a bath or have sex for 4-6 weeks. This is probably very good advice. Sensible advice. Well you know what, fuck that, it’s awful advice when you have just found out you have cancer and need further surgery imminently which will once again mean you can’t have sex for ANOTHER 4 – 6 weeks at least. As a single woman in my thirties I found this news rather sad to process. Come on, a girl has needs! So, as per usual, I decided not to listen and contrary to medical advice I decided to have sex with my lovely Leeds flame.

If you have had a LLETZ procedure and are wondering when to get back in the saddle then I would once again suggest listening to your body. In hindsight I probably should’ve waited a little bit longer. For any woman in my shoes I’d propose taking things slowly. Be with someone you are extremely comfortable with and/or ideally have had sex with before (this is not the time for crazy surprises). Make sure you are extremely familiar with each other and use protection. If you want to have a crazy mad session then wait and have a bit more time out after surgery to make sure you are completely healed. If you are in a relationship – take your time! Don’t let someone else dictate when you are ready. It is your body, you should be in control, if that means your partner has to wait then tough, you’re worth waiting for. You don’t owe anyone anything. On the other hand, if you feel ready then GO FOR IT! Cervical cancer is not sexy and it does not make you feel sexy so if you do manage to muster up feeling in the mood, go with the flow and enjoy it. Sex is great for your health, mentally and physically, and I think that anything that helps to alleviate that dark mood cancer brings and also strengthens your connections to another human being, making you feel less alone and simultaneously more at one with yourself, can’t be a bad thing.

This was not the first sexual experience I’d had since my LLETZ and cancer diagnosis. Without going into too much detail, I’ll spare you that, I’d been intimate with someone without penetration. It became an extremely emotional experience. I’ve never been one to get hugely emotional after sex but after this I sobbed my eyes out and I was so lucky to experience it with a really gentle, caring person who made me feel safe and cared for.

Medical advice may say don’t have sex for 4-6 weeks but how vague is that?! I was given that advice on a small sheet of paper explaining the procedure I’d just had. Sex… does that mean penetrative, non penetrative and what about, dare I say it, masturbation?! I don’t think the equivalent information would be quite as vague for a man.

During arousal blood flows to the genital area, and sexual excitement causes the upper two-thirds of the vagina to lengthen by forcing the cervix and uterus to ascend. Your cervix moving after being hacked at is always going to be uncomfortable… but again I suggest listening to your body. Don’t do anything that feels uncomfortable and give yourself time.

That Saturday morning I got up and went into Huddersfield. I was on a self care quest. I got my nails did! When in doubt go for sparkles!

 

 

I came home and made myself lovely food and swanned around in my lucky leggings. This was a self care weekend and I was going to do whatever made me feel good!

It was the weekend of Storm Ophelia…. it didn’t really seem to make it to Holmfirth or maybe I just didn’t really notice it that much because a) the weather is usually pants and b) I had my own little storm going on. At about 9 o’clock at night the wind had begun to howl and the rain had started. I had the fire on and sat cosy and curled up in the living room. There really is nothing better than being tucked up warm inside while the weather rages outside.

I had shared my news with family and very close friends but it felt right, now was the time to go public.

It was terrifying.

I genuinely thought that people would think I was attention seeking. I worried about what people would say and for some reason I worried about my parents most of all, what would they think about me being so open about my C word… I could still barely bring myself to say it. I had cancer. It was absurd. Would other people knowing put them in awkward positions? Would people think differently of me? I had so many thoughts and emotions going round my head.

I had been very open regarding the experience of my LLETZ and the strongest pull I had was to tell my tribe. I needed to know people were with me, rooting for me, sending me their love and thoughts. I felt so terribly alone and I just didn’t want to feel that way. I’m addicted to Facebook and it felt right to put it out there.

I also wanted to raise awareness. If this had happened to me then this could happen to anyone. I really wanted the women I knew to go for their smear test and avoid any of the physical and emotional trauma I was currently faced with, even though I wasn’t really sure what that was yet.

Thankfully my friends all responded beautifully. I received messages of love and support from all over the world. I really am extremely lucky to have such a great support system and I don’t think I would’ve coped as well as I did without them!

And well beautiful flowers and cards always help. The best thing my friends could do was lift my spirits and they really did! Thanks guys!

Don’t shy away from people. Reach out and talk to your friends. It might be hard at first but it is usually worthwhile! If you have a friend going through a rough time I’d suggest asking them if they want to talk about it. They might not, and that’s fine, but they might. There is nothing worse than avoiding the elephant in the room. Cancer is cancer, it’s not a taboo and it’s not Voldemort. Use your words. Reach out and talk, actually sometimes you don’t even have to talk, sometimes just being there with someone is enough.

At work it felt like I was winding down. I needed to arrange a hand over. I didn’t know when my surgery would be but it was looming like IMPENDING DOOM. The date for the meeting with my surgeon was still vague and my MRI and X-Ray appointment were getting closer by the second. I found working really difficult. I probably shouldn’t have been there but I suppose it kept me busy and gave me routine which was definitely a good thing.

Props were a great distraction…

 

 

The fish became slightly less demented when I put more water in the tank… you know your week is a tough one when a plastic fish becomes the highlight.

Onward…

Steph x

 

8. After The Diagnosis (ii)

Getting diagnosed with cancer is exhausting. Your mind goes into over drive. There are so many things that you end up thinking and worrying about that from the outside you would never consider in a MILLION years.

Work

I went back to work two days after being diagnosed. No one was there. There was a show touring and being performed in Stephen Joseph Theatre in Scarborough. It had always been the plan that I would stay behind at the office, holding the fort. I think it’s more like the fort was holding me.

I was in an empty office, talking to myself. Tears were shed at least every 20 mins. I’m not sure how much work I got done, I’d wager it was very little. It’s a bit of a blur now… but it doesn’t really matter whats happened in your life, you still need to be able to pay for things. Rent, car, food, life in general. Life goes on, very normally. Too normally. Your life has been turned upside down and you feel like you’re walking on the ceiling and everyone is still talking to you like your standing on the same ground as them, walking around normally and no one seems to notice and you want to scream “Can’t you see I’m upside-f***ing down here?! No, I don’t want to talk about *insert mundane topic here*!!!”

Cancer is an odd topic. It seems to reach most people. Everyone seems to have a friend or a relative who has been affected by cancer and if they haven’t yet, the chances are that they soon will.

In my previous experiences of cancer I thought ignoring it was the best possible option. Carry on as normal. Life goes on. Distraction is best. No one wants to dwell on something horrible. It was the elephant in the room and I was hell bent on avoiding it. When my grandmother was diagnosed with cancer my response was something along the lines of “Oh, ok then, right, what’s for dinner?”. Now don’t get me wrong, this wasn’t meant in a callous way. I didn’t want to give cancer any power. I didn’t want to give it the time of day. I genuinely thought that continuing on in a manner as “normal” as possible was a good thing. I thought it would be productive for the person dealing with this awful disease to have a haven where it wasn’t mentioned, to not talk about it, to forget about it and have 30 minutes of normal conversation where life was “normal”. WRONG!

Once I was diagnosed there was pretty much nothing else in my head. CANCER was there, loud and proud, screaming at me from the four corners of my mind and it wasn’t going away.

It was all I could think about and process. It didn’t matter what I was doing; driving, not sleeping, talking to friends, watching TV, eating, in the shower, on the toilet… basically just ALL of the time.

Friends

Two days after I was diagnosed a group of my friends came round. It was lovely. The elephant was huge and pink and sitting in the corner but having MY people there meant the world. I wanted to talk about cancer. I wanted to process it and analyse the experience I had been through and discuss the nitty gritty with the people I cared about. We chatted about all sorts of stuff, I remember lots of hugs and getting chinese food (Duck with Water Chestnuts and Bamboo Shoots – pretty much my ultimate favourite, so v v v good! Not necessarily healthy but good for the soul.) I think it was meant to be a games night but I don’t remember playing any games. It was mellow and lovely and just what I needed it to be. The majority of my friends had talked to Rosie and knew what was going on but I was able to explain in small chunks to people what was happening. Looking back, I was super positive when talking to everyone – apart from Rosie, I was unbelievably emo and shockingly negative pretty much every time I opened my mouth to her. I was constantly crying on her shoulder and she got virtually NOTHING back from me during that time. It wasn’t that I was lying to everyone else, I did genuinely feel positive and proactive and productive at times but Rosie just happened to get the bad truths, the deep dark soul crushing doubts that kept bubbling up to the surface. Gosh, that girl is a legend and I genuinely don’t know what I would’ve don’t without her! I let myself feel however I needed to feel at that time and having someone to voice that to REALLY helped. Having support from the people I cared about carried me through some very scary times.

The following day I went back again to work. Again this is a blur I don’t remember whether I delivered a workshop or not. I kind of hope I didn’t, but actually, thinking about it, it would probably have been the best thing for me and I think I did. That rehearsal room was the one place where you left the world outside and focused on the work. An extremely clarifying and refreshing environment to be in! I remember telling a colleague about my diagnosis. That was so so hard. I balled my eyes out. I think that was the first time I had to verbalise it IN PERSON to someone who had little, to no idea what was going on. That was tough. Poor girl, not what she’d signed up to deal with that day!

After the workshop, that I don’t remember I trotted off to the train station and travelled up to Scarborough. In my current state, I didn’t want to go, but in my heart I did. It was part of THE PLAN. I wanted to stick to the plan. I didn’t want to be a burden, or put extra pressure on my colleagues by not turning up. In reality though, they didn’t need me and I felt like I was in the way. It was a strange night. I arrived to Scarborough in the rain. I trudged to Lidl and bought a salad which I didn’t eat. The fire alarm went off in the theatre right before the show so we all had to evacuate in the rain. It was the last show of the tour. We went back to the hotel and had drinks. Everyone was tired. My mind was obviously elsewhere and I didn’t want to drink. The actors were super excited and pumped up with adrenaline. The rest of the staff were SHATTERED. I felt in a very strange world of in between. It was great to be included, because I wanted to be, but I was very much on the outside of what felt like the core team and that just exacerbated how alone I was ultimately feeling.

I did however get to spend the night in a beautiful hotel room.

 

When I had a few quiet moments to myself I continued to contact my nearest and dearest.

How Do You Tell People?

My best friend had been there, I didn’t need to tell her. I’d informed my parents by text. I’d informed my boss via email. It was easier to communicate via written word than verbally. Talking about it was HARD. I wasn’t sure I could get the words out without crying.

I knew I wanted to let people know about it. I just wasn’t sure how and I wasn’t sure when. I am a lover of Facebook… okay, maybe more of an addict, but for me it has always been an easy and effective medium to stay in touch with my friends in Ireland and the UK and America and Australia and… well everywhere really. I’d been very open about my LLETZ on Facebook and I felt I should be open about the rest of my journey too.

Family were informed first via Messenger. Then really close friends.

It was of kind like when someone informs their family and friends when they get engaged or are pregnant, before they go “facebook official”. I definitely would have preferred to be telling everyone happier news. I was extremely upbeat in my communication of the diagnosis and I didn’t really reflect the turmoil that was going on inside, however I have amazing friends and they know me very well.

The following day, I arrived home to this (thanks Hanni!)

I was relieved to be home and even more relieved that it was the weekend. I had the house to myself over the next few days and I really made a point of looking after myself.

*This is not the post I expected to publish, but if I’ve learnt anything throughout this interesting journey it is that there are some things I just can’t control and even if I do, things never seem to turn out quite how I had planned. I’m going to embrace the imperfection against the “idea” of what was going to happen in my head and just go with the flow. The flow is telling me to stop the story here and start again another day…

Top tips of the day :-

1. Go and get your smear test (or do that thing you have been putting off forever).

2. If you are feeling down or you have a problem or you are scared or just feeling a bit lonely/low/shit TALK TO SOMEONE. It’s a top move.

3. Treat yourself with care.

Hugs,

Steph x

8. After The Diagnosis (i)

We walked out to the car. I was SO glad Rosie was driving. I was completely flabbergasted and my stomach felt like it had hit the floor.

First things first. I had to tell my parents. There was no way I was in a state to speak to them on the phone without bursting into tears. So I did what every self respecting woman of my generation would with difficult news to share – I sent a text. In fact I sent this text to my Mum and an extremely similar one to my Dad.

Reading it now makes me laugh. I think I tried to down play it slightly…

Who knew, when there is actual drama I try to pretend there isn’t any.

It was a very difficult text to send. I also text my boss and work colleague, again extremely casually. I’d never had experience of this before. I wasn’t thinking clearly about processes and procedures. I was trying to hold myself together and all I knew was that there was no way I was going into work the next day.

“Hi both, the appointment was long and the news wasn’t great. The phrase lucky but unlucky keeps being bandied around. I’m going to take tomorrow off to process it all if you can cover F1? Thanks xx”

Like, really, Stephanie! Please. That is not the kind of message someone sends to their employer when they’ve just been diagnosed with cancer is it? It’s not the kind of message that I would’ve imagined sending but I did. Casual to the max. Denial, denial, DENIAL! Being professional was obviously not at the top of my priority list right at that second.

I had driven to the office that morning so Rosie needed to return me to my car at the theatre and I then needed to drive home. There was no way I was calling into the office. The fact it ever even crossed my mind that that might be expected of me is slightly worrying.

I cried all the way home. Crying and driving became quite a common occurrence for me over the next few weeks. There’s something freeing about being alone in a small space, obviously concentrating on whats going on around you but letting your mind wander and explore all the endless possibilities that life throws at you. The car is also a great place to scream! If ever you need to release some steam I really do suggest going for a drive, turning the music up stupidly loud and screaming at the top of your lungs. It’s very refreshing.

I was exhausted when I got home. The first thing I did was grab the house phone and ring my parents. It was hard to explain everything that had happened. It was hard to rack my brains for the details that were still a blur of information all jumbled up in my head. I really didn’t want to worry them but also I didn’t want to leave them out of the loop. My mum offered to come over but I needed space. I needed time to myself. I knew that I’d need her very soon for the bigger things to come.

Rosie had a dance class to teach in Manchester and I wasn’t up for Blues dancing so I was left home alone. Usually the first thing I want to do when I’ve been given bad news/been dumped/am stressed/am tired/am hungry etc is eat rubbish food. Takeaway, pizza, chocolate, crisps, fried chicken… basically anything that isn’t good for you is what I stuff my face with. What can I say, I’m a well practised emotional eater.

This time, I lost my appetite and somewhere along the drive home my body had made the decision that I wasn’t going to put anything that wasn’t remotely healthy anywhere near it. I was seriously ill. Whatever I had been doing before was obviously not working and if I wanted to have any chance of being healthy and happy then I needed to start fuelling my body appropriately. It also helped that I had no appetite what so ever because I felt like I’d left my stomach at the hospital and I was on the brink of tears… it felt like it would be my new constant permanent state of being.

I didn’t want to be at home alone with my thoughts so I called round to my lovely friends Alison and Jonny. When I arrived Jonny was putting their daughter to bed. I stuck my head round the door and that darling angel of a girl was so pleased to see me. Her eyes lit up and that deep dark corner of my soul that had shrivelled up and died earlier in the day suddenly sprouted again. I became a little bit warmer and a little bit lighter. Kids really do make the world a better place, especially that little girl (not that I’m remotely biased or anything).

Talking to Alison that night was so helpful. Relaying the experience to someone else really helped me to start processing what had just happened. Everyone needs a friend who will openly listen, without butting in, without stamping their opinion all over everything you’ve just said. Everyone needs a friend who will offer you love and advice and who would drop anything at a moments notice for you if you needed it. My person was Alison and I suggest everyone find’s their own Alison, because well, she’s currently taken!

That night was a dark one. I had a lot of very loud voices in my head. I was tired. I was in shock and I wasn’t quite sure what to think or do next. I didn’t sleep well. I cried a lot. It was the uncertainty of it all that got to me. The next day I was wrecked.

This is an extremely flattering picture of me the morning after being diagnosed. You’re welcome.

The Science-y/Cancer-y Bit

It was all a bit of a blur but I shall try and recall all of the information that was given to me by the consultant.

When I had my LLETZ they sent away that “chunk” of cervix they cut out to be tested. The results had come back and they had removed a tumour. The tumour was just over 4cm which meant it was classed as Stage 1 B Stage 2.

Which is explained far more clearly here – Cancer Stages

They had managed to remove the whole tumour. I have no idea how they did this but I’m not questioning it. I think my consultant did a pretty fantastic job!

Even though the tumour had been removed, because of the size of the tumour they had to make sure they had clear margins. The first step would be to have an MRI and X-Ray to see if the cancer had spread any where else. Once those results had come through I would then have a meeting with my surgeon who would talk to me about the next step.

The consultant said he thought they would suggest a cone biopsy – where they remove part of the cervix, better explained in this link – Cone Biopsy. They would also remove my pelvic lymph nodes for two reasons 1) until they took a sample they would not know if the cancer had spread or not and 2) it would prevent cancer from spreading at a later date.

So basically, as my consultant had stated when I went for my diagnosis : I was unlucky but also extremely lucky.

A cone biopsy would mean I would still be able to have children. The scary part is, I have discovered recently, if I had been in Northern Ireland or had a different consultant/surgeon I would be in a very different position to where I am now. I would probably of had a radical hysterectomy and any chance of being a mum would be well and truly dashed!

This was also a huge shock to the system. Having to think about motherhood. I’m 30, I’m single. Do I want kids? Yes, I want kids… but only with the right person at the right time… not RIGHT NOW and well what if the cancer has spread? What if I have to have further treatment? Radiation and chemo would make me infertile. What if I can’t have kids? Am I OK with that? How do I feel about adoption? Is that really an option for me?

These are suddenly very big questions to be thrust upon you… without even asking the bigger questions… What if they didn’t get all of the cancer? What if it has spread? What if it’s far further along than we all think?…

Those are questions I asked myself and had to think about. The ‘what if’s’ are important. You need time and quiet to process the sheer tonne of “stuff” that is flying through your mind.

First thing the next morning I emailed my boss with a more detailed explanation of what was going on. Writing it down and explaining it succinctly to someone else was a great way to process the information.

That day was an odd one. I watched a lot of Outlander (surprisingly hot men in kilts help during tragic scenarios). That was good. I spoke to my mum on the phone a lot, that was also good. I cried. I googled. Oh boy did I google. I messaged some friends and I started to try to come to terms with what was going on. In general I think I was surprisingly positive, so positive sometimes that I surprised myself. It really was a crazy emotional roller-coaster.

On thing I found extremely difficult was being what I call in the ‘Land of In Between’. I felt like my emotions were being constantly pulled one direction and then the other.

I have cancer – This is shit.

They found it early – This is great!

I have to have surgery – This is scary and painful.

So many people have it worse than me. I hopefully won’t need further treatment. – This is amazing.

Maybe it has spread already and this is just the beginning – This is bollocks.

You are young, you are technically healthy now because they have supposedly removed all the cancer, you have so much to live for. This is amazing – BUT I FEEL LIKE SHIT!

So basically that was the inside of my head. I felt sad, then happy, then guilty, then annoyed, then frustrated, then elated, then… well fucking exhausted because my brain was running on over time.

The day after my diagnosis I found a fantastic blog: At Your Cervix.

I suggest you read it for yourself. Gerry is a) hilarious and b) so honest and truthful that you can’t help but love her. I owe this woman a lot for writing down her experiences and sharing her journey. She has made me laugh and she has made me cry, I mean like majorly ugly snorting snotty crying cry. Her blog really made me feel like I wasn’t alone. She inspired me to share my story and even though I’m only part of the way through writing about my journey I know that it’s already helped A LOT of people and for that, it has all been worth it. Knowing that my friends are healthy and have been checked, knowing that strangers have gone for their smears from either reading or being recommended by a reader, knowing that some gorgeous little girls will still have their mummy for years to come because she caught it in time has made all of it worth it. All of the tears, the pain, the big decisions and life changes have all been worth it.

This diagnosis, for me, was a life changing event. It was sad, it was hurtful, it was painful BUT this diagnosis saved my life. Having cancer has made me change and it has made me grow and I can now say, 100%, that I am committed to living and loving wholeheartedly. I am determined to live a life that I can look back on with pride. I am determined to share my experiences so that other people may benefit from them and I am determined to enjoy the life that I have been given. This is not a dress rehearsal (yes, sorry, a theatre reference, go figure), we are only here once so we need to make the most of it. Take the risk. Go out of your comfort zone. Do that kind thing. Tell/show the people you care about that you love them. You won’t regret it.

Onward,

Steph x

7. Diagnosis

I went to work. I couldn’t concentrate. I was counting down until Rosie picked me up at 1pm. We drove to Halifax. I was quiet. Rosie was super chatty… as per usual (and just how we like her). I livened up a bit when we sat in the waiting room, purely from nerves and adrenaline. I was wearing a dress because I didn’t know if I’d be examined again. I didn’t know anything. I knew in my gut that something wasn’t right and this was not going to be good news.

My heart was pounding. I was nervous. Normally I’m nervous excited. In a weird way I love that feeling of nerves and adrenaline. I associate it with performing. The build up and tension, all the hard work and effort that has been put in before a show. You step out on stage and you’re somewhere else, you’re someone else, using that built up energy to put on an amazing performance. Nerves put you in touch with your emotions, you can reach them faster, react truthfully, express what you need to clearly.

This was not a show.

The doctor came in the the waiting room. We recognised each other immediately. I stood up. He told me to come this way. Rosie and I followed him to a small room around the corner, we were accompanied by another woman. I didn’t recognise her. It was what I would call a relatives room. Chairs and a sofa around a small table. The chairs were comfy ones… not hospital waiting room chairs, the ones you’d find in student hall living rooms. Comfortable but not pretty and definitely not elaborate. There was a box of tissues sitting on the table.

Rosie and I sat down. The doctor introduced the nurse, who wasn’t dressed like a nurse.

“I’m afraid I have bad news. The results came back from your last procedure and were positive for cervical cancer. I’m so sorry.”

He paused. He looked at me.

“OK.” I said. I took a big breath in. I looked at Rosie, I looked at the nurse, I looked at him.

“The results showed a 4cm tumour, which we removed, but I think that we got it all. Because of the size of the tumour we need to make sure that we have all the margins so we are going to have to operate. At this stage the prognosis and survival rate is very good. I think you can have a cone biopsy where they cut away some of the cervix…”

This is the point the tears started to well. I remember vaguely what was said but not word for word. I tried really hard to hold it all in, to hold the tears back, but they ran down my face freely. I had cancer. I hated to be right. I hated the little voice inside me saying “I told you so”.

“… I’m so sorry.” The doctor stopped talking. He was looking at me…waiting. Rosie was looking at me… waiting. The nurse looked at me…waiting. What were they all waiting for?! Me to cry? Me to scream? Me to do a little dance? Urgh, I hated them looking at me. It made me so uncomfortable.

This whole process seemed so familiar. It was exactly like you’d imagine it to be. I felt like I’d watched it a 1000 times on television before, in films, read it books… but this time it was different. The cameras were all the wrong way. The perspective was all wrong. I was not watching this from the outside. This was me. This was real life. This was really happening to me. Everyone was watching ME. Not someone else. Me.

So many things were running through my head. I had so many emotions.

“It’s ok.” I responded. “It’s not your fault.” I smiled through my tears to the doctor.

I’d just been giving a cancer diagnosis and I was trying to make the doctor feel better… who does that?!

“At least we’ve found it.” I chirruped between sniffs and sobbing outbursts.

I had a severe case of what my ex boyfriend fondly refers to as the “till lip”. It’s when I trying my hardest not to cry and my face screws up and my lower lip comes out and starts to quiver. It’s a really attractive look I must say!

The doctor told me more information. I tried to take it all in but it was a lot of stuff to take in at once and all my energy was going into not bursting into a crazy, hysteric tearful snotty outburst.

My family. I needed my family. “I’m from Northern Ireland. My parents are in Northern Ireland. Am I better going home to have this done?”

I wanted my parents. I wanted to go home. I was not doing this by myself.

“It’s better to stay here. You can talk about that with your surgeon. We will be meeting on this date and discussing your treatment after that we will schedule a meeting with your surgeon. It’s only a few weeks after your LLETZ so we need to wait two weeks until you’ve had more time to heal from that procedure. Do you have any questions?”

Yes, of course I have a million questions. You’ve just told me I have cervical cancer. I want to know whats going to happen to me. I want to know how this happened. I want to know – EVERYTHING.

“Um, yes, but I can’t think of anything right now.”

“How about we give you a minute? Give you a chance to think.”

“Thank you, yes, that’s a good idea.”

The door closed behind them and I sobbed, hard. Rosie’s shoulder was soaked by the time I was through with tears and probably snot. It was a good job that box of tissues was there. I was shaking. I was shocked. I was overwhelmed. I was sad, so so sad. My whole world had suddenly imploded.

I remember I kept taking tissues, using them until they were sodden and then putting the used ones in my handbag. I didn’t want to just leave them sitting on the table. When I got home I had to empty all of the wet tissues out of my bag and into the bin.

Isn’t it odd, the details you remember…?

“Rosie, what do I need to ask?”

She looked blankly at me. “I don’t know. What about HPV? And what about emotional support through this?”

I nodded and sniffed in response.

The nurse returned, without the doctor. She had a habit of sitting and looking at me… just waiting… it drove me slightly bananas. I’m such a people-pleaser. I just wanted to do or say the right thing to make it all better, more comfortable but I had NO notion what to say or do.

She brought a small folder of goodies with her. It was what I basically called my Cancer Bible over the next few weeks. Until my surgery I barely left the house without it. It was a bit hefty to carry in my handbag but it was my own little stash of information, my security blanket.

We looked through the books. Did I understand? Yes… What now?

“Go home and wait. We will send a date through for your MRI and X-Ray and a date for you to meet with your surgeon. Once you have spoken with him he will schedule the surgery.”

“OK. Right. Um… thank you. Wow. You have a really hard job. It’s been really hard to tell me. Thank you for being so clear. Please tell the doctor I said thank you too. OK. We’ll go now. Thank you. Bye. Thank you.”

Then came the hard part…

Steph x

 

 

 

22. Listening – a life skill. Can your doctor do it?

I’ve gone slightly out of sync with this post…

I am angry, no, more than that…infuriated! Vexed! Exasperated! Raging!!!

Today I went to the hospital for what I was told would be a smear test. A routine smear test, 3 months after my surgery. My surgery happened on 6th November and today is 20th March so already they are a few months out but I’ll forgive them that.

I was going to rock up to the hospital, see the same lovely doctor I saw the last time, drop my knickers have a smear and head home and pretend I wasn’t panicking about the results for a few weeks, get an all clear result and job done.

WRONG!

Today I rocked up to the hospital with my Mum (Hi Mum!). I stood at reception in a small queue while the receptionist gossiped away to some patient she knew about anything other than the reason that person was in the queue. When I finally reached the desk I was sent to sit down in the waiting area.

It was freezing outside but the sun was shining. There was a tiny crack in the curtain and Mum and I basked in the sunshine in the waiting room. The doctor called us in promptly.

He was not the doctor I had seen before.

He was curt from the off.

“Hello. How are you? Please come in and sit in that blue chair over there.”

He sits at his desk and opens my file (which is getting to be a reasonable size now). He briefly looks at the first page.

“I see you had your surgery done in Leeds.”

“Yes, that’s right.”

“But you live in Northern Ireland permanently now?”

“Yes. I do.”

“And you had a radical hysterectomy and your lymph nodes removed.”

“No. I had a cone biopsy.”

“Oh so you had a radical trachelectomy then…”

“No. I had a cone biopsy and my pelvic lymph nodes removed. Whatever it’s called… a lymphadenectomy, I think.”

“And you had Stage 1b1? That’s a very conservative surgery, it should’ve been more extensive than that.”

“Yes. I know. When I had my LLETZ the consultant managed to remove all of the tumour, which meant I could have a cone biopsy to get the margins.”

“Do you have any kids?”

“No, which I believe is why they did a cone biopsy rather than anything else.”

“Well you do know that you’re a ticking time bomb don’t you?”

“Yes, well I’d rather keep as much of me as possible for as long as possible thank you.”

“Yes, a lot of people think that but the cancer is very likely to come back. What age are you?”

“Thirty.”

“What do you use for contraception?”

“Just condoms.”

“Well, why the condoms? You really should be getting on with it?”

“I haven’t quite found the right man yet. I’m picky.”

“You don’t need a man these days. Right, I’m going to give you an examination so get undressed behind the curtain. There’s a blanket there for you to hide your dignity. I’ll go and find someone to hold your hand.”

He left the room.

My mum and I looked at each other.

WHAT?!?!? Seriously what the fuck just happened?! My mum was just as stumped as I was. I said “He’s horrible. I don’t like him. What planet is he from?! He’s in the dark ages!”

I undressed and moaned at the fact I didn’t want him anywhere near me. *

*Notice the fact I did not tell him this. Notice the fact I did not do anything about this at the time, even though I have verbalised it to my Mum and was very clear. In hind’s sight, in this scenario, I believe that if I was a man I would have said “No thank you. I think we have conflicting ideas. I would like to see another doctor.” But I am not a man, I am a woman. An inherent people pleaser. I had mustered up the courage to come to the doctors. That is a big enough (and thoroughly draining and emotionally exhausting) job these days. I was there for a smear and a check up and that’s what I was going to let the doctor do. For everyone who doesn’t understand the grey areas of consent, this is exhibit A for you to get your teeth into. It takes a lot of courage to tell anyone “No”, never mind when you’re in a compromised position, especially when they are an experienced medical professional and essentially the only reason you don’t want them anywhere near you is because of what they have said which is that I’m currently a “ticking time bomb”, he hasn’t listened, has treated me like I’m stupid and made me feel slightly worthless, writing off the last few months as a waste of time.

A nurse arrived, she seemed nice. I lay back, put the soles of my feet together and dropped my knees.

The doctor moved the blanket down, uncovering more of me than I’d have liked and said are these from key hole surgery? Looking at my scars. “Lots of entry wounds. How many incisions did they need to give you?”

“Yes, I got a new bellybutton in the process.”

“I noticed.” he said.

I laughed, again trying to lighten the mood and inside thinking “Fuck off! My surgeon did an awesome job. 5 tiny incisions and he managed to remove 20 pelvic lymph nodes. I wouldn’t let you near me with a scalpel if it would achieve peace on earth.” This is my body now! I’ve embraced it! How dare he try to imply they didn’t do a good job. Seriously, excuse my french, but what a wanker.

The doctor told me to relax. I told him I was very used to this routine by now.

“Well let’s hope you don’t get too used to it.” Oh, ha ha ha… yeeeah, 5 months too late you funny, funny man. My sides are splitting.

“Oh!” he exclaimed, looking through the speculum. “You do have quite a lot of cervix there.”

“Yes.” I said. “I had a cone biospy.”

He took out the speculum and proceeded to feel around my vagina and cervix whilst pressing on my stomach. I really had to stifle a guffaw. It was so unpleasant. You either laugh or you cry. Being uncomfortably fingered, sorry “medically examined”, by a man I’d met 10 minutes before and already disliked with a passion. Seriously, what did I do wrong in a past life?!!

“Well that all looks and feels normal.” He said finishing up. “But we can’t know for sure.”

“Are you not doing a smear test?”

“Oh no. It’s far too early for a smear test. The scar tissue would cause you to be called for a colposcopy.”

“But I had an exam the last time I was here and they said that the next time I was called in I’d be getting a smear.”

“No, no. It’s far too soon. With your history they’d be looking for an abnormality, any abnormality. Let’s discuss this when you have clothes on.”

I was sitting on the bed. With my top half covered and my nether regions covered with a blanket… basically he didn’t want to answer my questions and was rushing me out.

He started talking to me through the curtain as I was getting dressed which meant I had to rush even more.

When I emerged from the curtain he was again adamant that it was too soon for a smear and that it would be hard for a smear to pick up anything as it wasn’t a diagnostic test. I would probably be called in for a colposcopy after a smear and while I still had a cervix and reproductive organs I was susceptible to the cancer recurring.

He said he would call me back again in two months for a smear.

My mum and I left. Shell shocked.

I was seen as two things in that appointment – a baby making machine or barren. There was no in between. There was not thought of hormonal changes and imbalances from a hysterectomy. It was just easier. His equation was : no cervix = no cancer. If I had met this doctor after my first smear I would probably no longer be able to have children. I would no longer have working reproductive organs.

I couldn’t help but think that if roles were reversed he might be a little unhappy.

I do apologise for the image… but… imagine…

 

One table, one butcher’s clever. Said doctor with penis on table. Me examining.

“Well, you see here doctor, everything looks and feels healthy, but we can’t know that for sure and, surprisingly, you are reasonably well endowed. You don’t need all of your penis surely. We’ll just take this much off. And testicles? Well you have two. That’s just asking for trouble, how can know if they are both healthy?! I’ll just chop one off. That’s better. Less chance of recurrence that way. Oh don’t worry, you have most of everything there, it was a very conservative surgery if you ask me.

But if you don’t want to worry anymore, sure I’ll just remove it all! No? NO?! Really?! But it’s for your general health and well being!”

This is an issue I’m experiencing and hearing about all too often. Women’s health is not taken seriously. Women are not taken seriously. It is not OK! And is has gone on for far too long.

It’s also good to understand that although I may have the “all clear” it does not mean the journey has ended. It still seems I’m very much at the beginning.

Thank you Dr. Dickhead (not his real name… but close enough). You have managed to make this time bomb tick. You don’t know what you have started, but you can be sure you do not want to be anywhere near when I explode.

And the monster has been unleashed.

Onward!

Steph x