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

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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

 

 

 

 

 

6. The Phone Call

I had pretty much forgotten about my LLETZ, life was returning to normal. Work had been busy. The show had been a success and was still running, we were 2 venues down with two more to go. I was still feeling delicate but I was back running my workshops and managing to have more freedom in my movement again. I still wasn’t allowed to have baths, or sex, which was inconvenient but the count down was on.

It had been just over 2 weeks since my LLETZ. It was Friday afternoon. I was all excited as I was heading to Newcastle later that evening for Belta Blues. I had a list of things to do, I was being super productive… cracking on… until… BUZZ…

My Fitbit was going crazy. I had a call. Unknown ID. I don’t usually answer my phone at work but it was in my hand…

“Hello?”

“It’s blah blah blah from the hospital. We’d like to see you at the hospital on Monday at 2pm are you available?”

“Um, hold on a minute please.” I stuck my head around into my boss’s office. “It’s the hospital. They want to see me at 2pm on Monday. Am I available?”

“Yes!”

“Um… hello, yes. 2pm on Monday is fine. Thanks. Do I need to bring anything?”

“No. That’s booked in. Come to the Gynaecology ward and you’ll be seen there. Thank you. Bye.”

“Thank you. Bye.”

What the fuck just happened?!

The hospital rang ME to book an appointment. Usually I’m the one asking for doctors appointments. Or normally I have to wait. This is Friday. They want to see me on Monday. At the hospital. Holy fuck. Why the fuck do they want to see me?

I promptly burst into tears.

My boss came to see if I was OK. She gave me a hug and sent me out for lunch.

The doctor had said after my LLETZ that they would be in touch in about 6 weeks. That was meant to be it! What now?! What else can possibly be wrong?

I stepped outside. It was a really nice day. Tears were rolling down my face. I left the theatre and started walking into the centre of town. I rang my mum. No answer. I rang my best friend. “Please will you come with me to the appointment?” “Of course!”

My mum rang back. “The hospital want to see me on Monday.” “Do you want me to be there? If you want me I’ll be there.” Music to my ears. I would’ve loved my Mum to be there but the logistics were a nightmare. (And in my gut I knew there would be another time I would need her more. I’d rather have her there for that.)

Cancer? That was the worst case scenario wasn’t it? But what does that even mean? Was I going to die? Was I going to have surgery? Was I going to lose my hair? I’m 30 years old. 30 year olds don’t get cancer. Am I completely over reacting? I am getting the wrong end of the stick? What was going to happen on Monday?

I was terrified. I was confused. The pit of my stomach had fallen to my feet. I was going to be positive. I was going to dance the weekend away in Newcastle with my lovely friends. I would come back and face the music on Monday. Rosie would come with me. She could take notes. It would be fine.

That weekend was filled with joy and cuddles and uncertainty.

I met beautiful people, amazing role models and made friends for life. I had wonderful dances. I drank the drink and ate the food. I took fantastic classes. I had to sit out of one, it was focused on hips… my hips and I were not in the frame of mind to be moving freely so instead I sat and read everything I could muster about other people who had had “the phone call”. I was still flat and tired after my LLETZ and soooo sick of sanitary pads but I was getting there. I travelled home that Sunday night with a full heart. I felt so loved and so supported.

Public Cervix Announcement

100% of cervical cancer is preventable.

I thought I’d be knackered on Monday from lack of sleep and worry but I wasn’t. I woke up ready. I didn’t know what I needed to be ready for exactly but I was ready.

The hardest thing is not knowing, anticipating what could be said. Running through all of the scenarios in your head. Not having the knowledge or information to know what might come next and knowing that no one but my doctors with the results of my LLETZ had any answers for me.

I didn’t tell everyone but it wasn’t a secret. I spoke to my friends openly. I was tearful. They say a problem shared is a problem halved. I think they are quite right. Find support. Find someone to sit with, to talk to, to share your worries with. Do not sit tight and hide how you feel. Be open. Feel worried, have a panic, then calm down and try to find the patience or distraction you need. The answers will come.

Onward,

Steph x

 

5. After The LLETZ

shell-shocked

ˈʃɛlʃɒkt/

adjective

adjective: shellshocked

1. suffering from shell shock.
2. • shocked or confused because of a sudden alarming experience.
   • “he told shell-shocked investors that the company needed still more money to survive the year”

I left the treatment room and found my Mum in the waiting area. I was so tearful. I couldn’t help but try to hold in what I was feeling.

The question “Well, how did it go?” was met with a “Fine.” response. I knew I just couldn’t physically say anything or I would end up in a puddle of tears on the hospital waiting room floor.

I was a given a flyer by the doctor explaining the LLETZ. It’s pretty vague.

I got to the car. I just wanted to cry. We then realised we hadn’t paid for our parking yet. I speedily said “I’ll do it.” Grabbed some change and jumped out of the car. I walked into the nearest official looking door and looked around for the pay machine. I’d walked into the Macmillan unit. It was a miserable day outside but walking into that waiting room sucked any energy I had left completely out. I knew that I never wanted to be called into THAT waiting room. I escaped outside and found the parking meter. Shoved my coins in and returned to in the back of the car.

Any answer I gave had to be extremely forced. It may as well have been extracted with a crow bar. I smiled and gave lighthearted answers but inside I was MISERABLE. I doubt I hid it very well from my parents. My tears streamed silently down my cheeks as I sat in the back of the car.

Public Cervix Announcement

Women who have had a cone biopsy or LLETZ are at slightly greater risk of miscarriage and premature labour, before 37 weeks, because of their weakened cervix.

We found a cafe to sit in on the way back. It was drab. I’d heard good things but it was pants. The day was misty and even the outstanding view was downcast and mediocre.

My parents drove me back to the theatre. I wandered up the street to Boots and bought sanitary pads (tonnes of pads) paracetamol and ibuprofen. I was uncomfortable but not horrifically so. I just felt extremely delicate, and tired – wiped out. By the time I’d wondered slowly back to the theatre the adrenaline had kicked in. I greeted the actors with a smile. I chatted to my boss and co-worker in the dressing room. I played down the whole experience. I spoke humorously about it. We all laughed at the fact that I wasn’t allowed to have sex for 4-6 weeks. It was lighthearted. I was in full on “make everyone else feel comfortable” mode. I have discovered this to be my default mode… as soon as shit hits the fan, I try to make everyone else feel better. The ultimate distraction technique.

The show was about to begin. I went upstairs. I mingled… badly, I always mingle terribly at performances, small talk is not my thing! I watched the show, I cried silently throughout most of it. I was so emotional, and it was also fantastic. I was so proud of the actors, all of whom had worked so hard to get where they were, I had worked hard to help them get there. Barriers were being broken. A full cast of learning disabled actors rocking the stage with a brilliant show, I was buzzing. I was also fucking exhausted!

My mum and dad were there and some friends had travelled to see the show. Drinks were in order and I was happy to see my friends and spend some time with them but I was exhausted and overly quiet and sore and SO ready for my bed.

When I got back to my sofa bed that night I had a cry. I was just completely overwhelmed and finally releasing some of what I’d been holding in that afternoon.

In the morning I woke up feeling like SHIT! My parents were leaving to head back to Northern Ireland, I was sore, I was tired, I had to say goodbye. I told work I was running late and headed in for shortly after half 9. I sobbed on my way into work.

I was running a class, other workshops were running simultaneously. There was no cover. This was a very physical class. I wasn’t up to it at all. I sat out for most of it “observing”. By 3 o’clock when my pupils had left I was done. I returned to my office and was informed by a colleague I had to move excess stuff in the store to make way for the set to be returned after the performance that night. Nowhere had I been informed I would be in so much pain. I was completely unprepared for how I was feeling and because of that everyone around me was unprepared to respond to me in a helpful manner. There was no way that I was going to be able to move the stuff in the store. I just wasn’t physically capable.

My boss had seen me briefly that morning and we’d not had time to have a very much needed chat. I felt isolated and alone and sore and also a bit useless and like a spare part. The frustrating thing is that with prior warning and organisation on both my part and my employers – I didn’t need to be there. But I was. And I was working my ass off. The show came and went and I helped do the get out. For you non-theatre practitioners out there, a ‘get out’ is when you get yourself and everything out of the theatre. Set, costumes… everything. I helped to carry. Nowhere had I be informed that I would bleed so much and so heavily.

Basically that whole day after the LLETZ was fucking miserable.

I drove home in tears at 10.30/11 at night. My housemate was amazing. She promptly fed me wine and chocolate and helped me send a message to my boss saying that I was not coming in the next day.

That night I slept soundly. In my own bed (yay)!

That weekend I was shattered. It took me quite some time to physically gather myself together. I can’t remember when I returned to work… it may have been the Tuesday. If I had known and considered how affected I was going to be by the LLETZ, both physically and emotionally, I could have taken some time… but I didn’t know for certain that I was going to get the procedure. I’d only guessed. There wasn’t a huge amount of information regarding the after effects of the procedure. Women put up with a huge amount. Even the average period is pretty unpleasant. I would guess that if most men felt that same under the weather rubbish feeling they would take time off work, never mind if it was accompanied by cramps!

Basically, I had a rubbish experience. I’m not suggesting that this is everyone’s experience. I’m sure there are women who come out of the procedure and are fine but it is also OK to be not fine.

Feel what you feel when you feel it.

I wasn’t allowed to have a bath or go swimming for 4-6 weeks. I wasn’t allowed to have sex for 4-6 weeks. All things that, for me, are definite defaults when I am feeling rubbish. Epic fail.

I’m not the only one who had a shit time. This woman sums it up pretty succinctly :- notsosexinthecity.com

Unfortunately there are lots of women out there, like me, who have to scrabble around for bits of information which should be a) readily available and b) thoroughly researched. Once again, women are put to the bottom of the medical pile. This is unacceptable!

Steph’s After LLETZ Top Tips

1. Tell your friends. Have a support system in place. (If you are one of these friends be super nice to your mate, maybe cook them dinner or bring a film over. Help them to relax and offer them a shoulder to cry on. Give them support as they mourn that part of their cervix.)
2. Take time to recover after. Stay off work until you feel ready to return.
3. Short walks in the countryside are good. Get some fresh air but take it easy!!
4. Eat nice healthy and hearty food. It will help! Have the things you like but don’t overload on crap, because when you do go to crap your bowel will press against your tender cervix… owch!
5. Have a good cry. Don’t hold it in. Be brave and be sad!

4. LLETZ

Continued from 3. Colposcopy…

My legs were wide open, sitting in the stirrups and the very chatty nurse was asking me some silly question about the weather. The stern doctor was approaching me with what looked like a rather large needle.

The most bizarre thing about this procedure was that I got to see it all happen, live, magnified and in HD. The colposcope was still in place and they had left the monitor on, right beside my face.

Public Cervix Announcement

The most common treatment for CIN2 and CIN3 is loop diathermy also know as LLETZ – Large Loop Excision of the Transformation Zone (LEEP outside the UK – Loop Electro-Excision Procedure). Its aim is to remove all the abnormal cells from the cervix.

Now I’ll admit to being a bit morbid and possibly even masochistic at times. I actually like injections. Well not like as such, but I find them fascinating. I quite enjoyed going and getting piercings when I was younger, much to my parents horror. They didn’t approve of the nose stud, or belly button bar or whatever new addition I’d decided to get that day at the end of term but I used to love watching the needle go through the skin and I found it never hurt quite as much as I thought it would.

Anyway… the injection for the local aesthetic wasn’t bad at all. It was much the same as when you go to the dentist and you have an injection in your gum.

The doctor then produced a strange wire thing, which was one of these (I think)…

Exhibit A

This is basically a heated wire that cuts through your flesh and removes a nice neat little chunk of your cervix so you can be cancer free and fanciful.

Once said flesh is out of the way the doctor will then cauterise the wound they have just made. For me, this was the GRIM part, watching and SMELLING your own flesh cooking. Seeing lovely pink body tissue inside you turning from rare to very well done. GRIM!

Sheesh kebab! YouTube is great but it’s also awful. I just watched some other people’s LLETZ procedures. It’s fascinating and they are actually all very different… but they are all slightly grim. Grim was my word for the LLETZ. There’s nothing particularly pleasant about it. You’re having a chunk of your cervix cut out… well if you’re me you are. I was genuinely surprised by the size of the biopsy they took. I had just assumed they’d be removing a few teeny tiny cells (and in many people that is the case) but what I saw was them taking out a big chunk of flesh. I’d say it was maybe the same size if not a wee bit bigger than a flying saucer…

I didn’t think my cervix was THAT big!

The whole procedure seems slightly medieval. I can’t help but feel that if it was a procedure for a man they would have adjusted it to be slightly more pleasant for the participant. Women’s health is such a taboo. It doesn’t get the research and funding it needs and frankly deserves. I’ll rant about that more a bit later on…

So the procedure is over. It didn’t hurt much as such. It was a bit uncomfortable being poked around down there but the chatty nurse was nice… she may of even held my hand. I can’t remember, because she talked so much! Quiet nurse had been skulking about for the past few minutes. She’d lost the syringe they’d used to inject me earlier. She asked the doctor if he knew where it was.

All three of them started looking around the room and I was told not to get off the chair. I did have a brief moment where I prayed that they’d not left it up in there somewhere. Finally they found it on the shelf under where I was sitting. I was told to get out of the chair extremely carefully so as not to touch it. This, I’m sure, made for entertaining viewing as I was trying to get out of the chair making sure I didn’t stand on a syringe I couldn’t see whilst holding a massive wad of tissue paper between my legs. I waddled to the changing room where I was able to get cleared up. Getting a LLETZ is a bit messy.

I was asked if I’d brought any pads. I hadn’t. I was handed a HUGE pad. I may as well have put a nappy on or folded up a thick fluffy towel and shoved it in my pants. When I finished getting dressed I went back into the room and was directed to sit beside the doctor. For the first time since I’d met him I saw him smile. He said that he thought he had removed all of the abnormal cells and he was pleased with the procedure. He would send the biopsy to the lab and they would be back in touch in a couple of weeks with the results.

I was told not to have go swimming, have a bath or have sex for 4-6 weeks… (ah ha). I was handed a pamphlet with information about the LLETZ procedure. It was very vague. I felt sore but relieved and slightly tearful. I thanked the nurses and the consultant and bid them fare well.

I went out into the waiting room to find my Mum.

Bear in mind that the whole procedure from chat, Colposcopy, LLETZ to another chat took about 20 minutes. As I sit and try to remember it now it seems like it lasted a LOT longer.