23. Fucking Fed Up

So where am I now in the grand scheme of things?

A lot has happened in my journey and I haven’t written for ages. Writing this blog is hard work. It’s emotionally draining. It requires me to put myself back in the mindset of where I was a year ago… and most days, in all honesty, I’m not quite up to that.

At the moment I am fucking fed up. I am in quite a lot of pain. I don’t let on much to people because, well it’s not the easiest thing to talk about.

I started having pain in June/July 2018. I started to feel quite strong/severe pains in my pelvis. The pain would sometimes spread down my legs and across my lower back. It was pretty uncomfortable. I had been told by my doctor that I should get in touch if I started to have pain in my lower back. It was something to watch out for. I booked an appointment with the doctor but it was a week away and well after having cancer you don’t really want to take any chances so I emailed my Key Worker. She rang me back and talked to me about the pain. She assured me that it wasn’t cancer as I’d had a smear not that long before and suggested the pain was muscular (which I knew it wasn’t) and would go away in a few days.

From that conversation and the fact I didn’t feel I could take time off work I cancelled my doctors appointment. At the time, I was working in a department store, standing all day serving customers, stocking shelves, cleaning… basically getting up and down all the time which began to KILL! I started to get dizzy and felt crap! I was sooooo uncomfortable. After I finished work one Friday night my Dad drove me to the doctor on call. I waited and waited and when I talked to them about my symptoms they said there was nothing they could do for me and if I was really worried I should just go to A&E. My parents picked me up. I was in a lot of pain. I told them what had been said and they drove me to A&E. Now the last two times and ONLY other times I have ever been to A&E I was bleeding profusely, I’d just had surgery to be treated for cervical cancer and I had a terrible infection. Things were pretty bad. I am not the type of person to rock up to A&E for no reason. When I got there I was put through triage reasonably quickly, they took some blood and after quite a long wait I spoke with a doctor who said they couldn’t do anything. It was a Friday night, they didn’t want to admit me, there were no beds and there was no way I’d manage to see a gynaecologist before the following morning. They loaded me up with painkillers and sent me on my way, making me feel rather foolish.

I had a weekend of being miserable, I even went to work the next day and was a complete mess. On the Tuesday or Wednesday I ended up going to the doctors and they had a look at me. So once again I’m lying on my back in the doctors with my legs apart. By this point I was really inflamed and tender as well as having the really bad pelvic pain, which more often than not spread across my back as well. I was told I had a severe thrush and that a course of pessaries would solve the problem, but they also wanted me to get checked out by my gynaecologist because they didn’t want to miss anything in case it was cancerous. I was told that it would be quicker for me to approach my own specialist than to be referred to someone else.

So I give it a week or two… nothing much changed apart from not being inflammed. The pain was still really bad. I ended up having to take time off work so once again I called my key worker and she made me an appointment with the gynaecologist… it wasn’t until the beginning of October. She also arranged an appointment for me to talk to her as a hand over since she was now my key worker. This would be late September. The medication wasn’t working so I went back to the doctor who gave me more medication… once again for thrush and also painkillers. Now painkillers don’t seem to touch whatever this is but at this point I’d try anything if I thought it’d help.

I was still in a lot of pain… during all of this I was applying for new jobs and finally got one… hooray! So I managed to hand my notice in, tag along on a holiday to Ibiza with my parents, move house and start a new job in Belfast. I wasn’t fit for much on the holiday. I couldn’t walk far. I was in pain pretty much constantly.

When I got home I discovered that I had an appointment at Antrim hospital, I hadn’t asked for this appointment, I just assumed that maybe the doctor had referred me.

I had my phone call with my key worker. She was aware that I was going to see a doctor in Antrim hospital and told me not to both and to wait to see my doctor in Belfast. I at this stage was in a LOT of pain and so I wanted to see someone ASAP, also I knew I had to reschedule my Belfast doctor’s appointment because of work commitments and I didn’t know how long that would take.

On the phone my key worker asked how I was. I explained I was still in pain. She said “Yes but how are you apart from that? How are you coping? Are you managing emotionally? Are you able to do the things you want to do physically?”

NO! I’m not. HELLLLLOOOOOOO! Aren’t you listening?! You’re asking me how I’m doing after having surgery from a cancer diagnosis over 6 months ago and being pretty good to suddenly then feeling constant pain in and around the problem area and you want me to separate it? For all I know the pain I’m currently experiencing could be caused by the surgery and you want me to separate it? Its not like me saying I have a sore elbow.

“I’m having severe pelvic pain love and it’s effecting my every day life, no, today I’m not doing OK, can you not hear through my sobs?!” – is what I wish I’d said. I remained polite. I still cried. She didn’t seem to think I needed psychological help. What she did think I needed was to be posted a sheet informing me about exercising my pelvic floor and help getting back into exercise with local cancer support centres.

I can’t do any exercise because it fucking hurts! It’s not the kind of pain that it feels right to “work” through, or I would be! I am so ready to be doing exercise again, I want to be out dancing every night… not lying on my bed thinking I’ve been staying really still for the last 30 mins and it still fucking hurts!

I HATE FEELING LIKE I’M NOT BEING LISTENED TO. I also hate being passed from pillar to post with no one taking me seriously and no one giving me any answers.

When I go to Antrim the following day I discovered that it was with my favourite doctor of all time… if you don’t remember him look back a few blog entries, he’s the imbecile that told me I was a ticking time bomb and that I should’ve had a hysterectomy.

He was pleasant enough. He told me he wanted to do a smear and a test for HPV, for his own curiosity and he’d been reading up on conservative treatments like mine. Personally I don’t feel like my treatment was conservative at all. I had a LLETZ followed by a double whammy of a joint cone biopsy and 20 of my pelvic lymph nodes removed. It took me ages to recover, especially since I managed to get a really bad infection when healing from the cone biopsy, and that’s only physically. It took a very long time for me to heal emotionally, I’m still on that journey and I probably will be for a long time to come. so he can shove his “conservative” treatments where the sun don’t shine. He said that everything looked and felt fine down there – yes I had to let that man inspect me again, urgh, I don’t even want to talk about how violated I felt and how obviously desperate I was to even let him in the same room as me again after the last time.

I told him that I was in pain. I tried very hard to explain it. It’s difficult. I’m articulate enough at the best of times but when it comes to describing pain I’m experiencing I find it so difficult. I don’t have the words to explain how it feels, I haven’t even got the vocabulary to explain where the pain is.

When I think about it now I basically have a constant throbbing pain. The only other way I can’t think of likening it to is having really bad period pain, REALLY bad period pain but not being on your period. I’d say it’s somewhere around my cervix because well I’ve become a bit more acquainted with that area over this past year, however it doesn’t feel like the same pain that I had after my surgery. This pain can travel. It is exacerbated when I move. If I bend over it is excruciating. I physically can’t just bend down anymore, it takes all my concentration and effort putting my socks on in the morning. Tidying up is a nightmare. Hoovering is a bitch. Driving is uncomfortable. I drove to Derry the other day and spent half the journey there in tears. Leaning forward to press something on my sat nat felt like someone had kicked me in the stomach. The pain also travels down my legs, deep down into my thighs. It can be sharp and it can also be a deep throb. I can be woken in the night by how sore it is… let’s just say it’s not pleasant. I am so fed up and exhausted, physically and mentally.

So when talking to Dr. Knobhead, as he shall now be known, I tried to explain my pain and told him I’d been told it was thrush. He told me that I should soak a tampon in yoghurt and insert it.

Insert eye roll here.

For a start… mister… have you ever tried soaking a tampon in anything and inserting it? No, you haven’t, because that is not the point of a tampon you cretin!

Secondly, you seriously want me to wonder around all day with yoghurt in my vagina. That is so impractical. It would be hella messy and don’t even start me on the smell! I’m almost crying laughing sitting here thinking about it. Yeah, that would go down really well in my new job, rocking up with a big white patch on my crotch, smelling faintly of yoghurt and smelling stronger as I curdled throughout the day… Fuck me, it’s absurd!

I get it as an old wives tale… and yes it probably would be soothing if you were sore and inflamed but really?! I’m coming to you for professional expert medical advice and that’s what you tell me? FML!

I also asked about how to manage the pain. He said there was nothing he could do or give me for that. Just keep taking paracetamol and ibuprofen (even my GP for thrush gave me stronger stuff than that).

So after that pointless and traumatic trip to the consultant I had a good cry on the way home. I contacted my GP again and spoke with her on the phone and explained that the medication wasn’t working and I was still really in pain. She then prescribes more treatment for thrush (but this point I’m pretty sure thrush is not what my problem is, but who am I to be listened to? It’s only my body after all).

The weeks dragged on.

I even went online and tried to find experts to get me some answers. No one was able to give me any insight. I was even told that I was probably imagining the pain. At this point I was feeling extremely hopeless, lonely and helpless.

My rescheduled appointment with the Belfast consultant was at the end of November. By this point I’d long run out of stronger painkillers and the thrush prescription I had been given that was meant to last me until the middle of January, I’d finished by the middle of November.

I went to my appointment with the Belfast consultant. I told him I was in pain and explained about the thrush. He said he’d take a look, have a feel, do an ultrasound and we’d go from there.

We did all of those things. He said it all seemed fine and he didn’t think it was cancerous.

Now, I don’t mean to sounds trite, but at this point in time I honestly couldn’t give a fuck if it was cancerous, a parasite, a virus or an actual alien growing inside me, it hurts, really badly, ALL the time. I’d just like to know what is wrong and why I’m hurting so it can hopefully be fixed. He was ready to send me out the door.

I said “But what about the pain?”

“We can’t really do anything about the pain.”

“But what is it? I can’t keep going like this.”

“What would you like me to do?”

“I don’t know! That’s why I’m here. Something else!”

He then said that he would schedule me in for a CT scan. He didn’t think it would show anything up. What the pain could be is scar tissue from my surgery. I could have a syndrome where the cervix is tightening and if that’s the case they could give me surgery to widen it.

So I once again left the hospital in huge amounts of pain, feeling like I hadn’t been taken seriously.

I went for my CT on Monday. I drank lots of lovely chalky tasting water and was given contrast. A fun Monday out… it’s a good job I don’t mind needles.

I spoke to women there who had been clear of cancer for years, I spoke to a woman who had been diagnosed 8 years ago, had been given the all clear and two years later she was back in and told that it was stage 4. She’d been managing it every since but wasn’t expecting good news from her scan.

Once again I am in this land on inbetween. It’s not cancer – which IS amazing, don’t get me wrong. I’m thrilled. Super super super thrilled! However I am still in pain and there doesn’t seem to be any light at the end of the tunnel. With this pain it feels like my chances of conceiving, if I ever want to, are circling the drain at a rapid rate. It’s hindering me from living the life I want to live. It’s stopping me from being quite the happy bubbly go getting Steph I want to be. The last 6 months have been amazing! I love my life at the moment. I love my job and living in Belfast and everything is great… but it would be so much better if I could enjoy it all without being in tonnes of pain.

I don’t know when I’ll get my CT results back, I’ll ring them for an update tomorrow but I don’t imagine they will provide much insight.

Oh so tired and fed up… but still going.

Onward,

Steph x

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11. Surgery i

D-Day was approaching. I’m not going to lie, I was scared shitless.

I returned to work the following day and cleared my desk. I didn’t know how long it would be until I came back (and in all honesty, a small part of me knew I wouldn’t be returning). I tied up all the loose ends, handed everything over and took a deep breath.

That Friday morning I drove with my Mum to St. James Infirmary in Leeds. My heart was in my mouth. I was just there for a pre-assessment. I had swabs taken to make sure I wasn’t bringing anything dodgy into the hospital. They measured me, weighed me and took blood. A few hundred questions later I was set free.

There’s a “hotel” at the top of the hospital. Who knew?! So we signed up to arrive there on Sunday night so I was there bright and early for my surgery on Monday morning.

We went home.

It was very strange to think that the next time I’d be back to the hospital I was going under the knife.

I was exhausted. Emotionally and physically.

Friday and Saturday were spent packing up my room at Rosie’s house. I’d been sharing my room since my Mum had arrived earlier in the week so I banished her to the spare room which had appeared. It was nice to get a bit of breathing space and have a good cry.

On Friday, Mum and I met some friends at a fair and watched the fireworks. Getting cuddles with these guys was the best and a very good distraction! I have a lot to thank this beautiful family for, oh just so much love!!!

On Saturday night Rosie and I went out into Holmfirth. She arrived late. I was miffed (but hey it’s Rosie, we all love her lateness and I should’ve been used to it by now so I got over pretty quickly). We went into The Winking Stag. We drank gin. A fuck tonne of gin. And if I remember rightly rum cocktails in teapots, but I could be wrong.

We talked and cried and talked and cried and pretty soon we had the basement to ourselves. To be fair we’d probably scared everyone off. The staff we’re fantastic, they could see we were obviously upset so they kept on bringing us very tasty drinks and checking up on us and even gave us free shots at the bar. This all seemed like a great idea at the time.

The next day, Marshal arrived to pick us up and take us to Manchester where we were meeting some friends for a crepe party. Yes, a crepe party. They are great. It is a party where everyone brings toppings and we make lots of crepes (similar to waffle parties of which I am also a fan). I was determined to go because I knew it would be the last time I saw some of my friends for a while.

Waking up the morning after, fully dressed after the night before, always a good sign and great way to start the day!

I was hungover. Really badly hungover. Alcohol on a reasonably empty stomach the night before had not been a great idea and my new veggie gluten free diet of not very much didn’t give me much opportunity to soak up the fumes of the night before. My mum came to my rescue and make a sort of ginger chia seed fruit mix, which was very strong and flavoursome and super tasty, so tasty I ate quite a lot of it hastily and dashed into the car. The journey over Saddleworth Moor was pretty bumpy and I was pretty green by the time we got to Ashton-Under-Lyne and I can only apologise to the drivers behind us who had to witness me being sick as we stopped at the Asda traffic lights. Classy bird me, but hey, I managed to not vomit in the car, chia seeds would’ve been a bitch to clean up! You’re welcome Marshal 🙂 So after a little diversion to Asda to get wet wipes and paracetamol we made it to the party.

I stayed in the car for a while, had a little nap and mustered up the courage to face people. It wasn’t the best crepe party I’d ever attended. Mainly because I didn’t eat anything apart from blueberries because… well newly I was newly gluten free… I’d forgotten about that so no crepes for me and I felt like death warmed up so I spent most of the afternoon curled up on the sofa, wrapped in a blanket chatting to lovely people, trying not to think about the adventure to come.

When I got home that evening I packed my bag, said my goodbyes and I drove my Mum and I to Leeds. We got to the hospital quite late. There was no one around. It was fun trying to figure out how to get into the “hotel”, lugging my bag around with me filed with stuff I in hindsight really didn’t need.

We finally got into our room after bumping into a very helpful cleaner. Huzzah! I got into my PJ’s and tried to sleep.

The room was pretty good to be fair, like your average Travel Lodge. Didn’t feel like much of a holiday though. I’m so glad my Mum was there with me. She’s a super hero!

In the morning I packed up my stuff and sleepily wandered to my ward on the Bexley Wing for 7.00am. I felt slightly begrudged at having to get out of my pyjamas to put on sensible clothes to then have to undress again, put on a beautiful, dashing robe and of course, the sexiest socks of all time.

Not long before my diagnosis I had invested in the softest, warmest dressing gown of all time. It was the best present to myself I had ever gotten so I was quite happy to be snuggled up in that as I waited. I had more bloods taken and chatted to the doctor. I then was asked a million and one questions by the anaesthetist who then disappeared and I waited again. It wasn’t long before another doctor arrived, I gave my mother the hugest hug of all time and walked down the corridor to the operating rooms.

I was lead into a waiting area and told to make myself comfortable on a bed.

Going for an operation means you have a shit load of small talk to do. Seriously, so many people to chat to in such a short period of time when you’re panicked to hell!

I sat a chatted to a lovely woman about nothing in particular and then another person in scrubs arrived. It was my surgeon. I apologised to him for “not recognising him with his little hat on”, I think that went down well. He asked how I was. I said hunky dory. He said great and he handed me over to Gina and Tina, two nurses who made a joke about being the dream team, G&T. I think my joke about the fact I could do with one or three of those at 8 am in the morning went down like a lead balloon, their loss. I got wheeled off to the anaesthesia room… (I don’t know what else to call it). I had one person trying to get a vein in my right hand and another person trying to get a vein in my left hand and another person looking at the crook of my elbow. Everyone was talking at once and occasionally people would talk to me and it was taking forever for me to register they were talking to be because I was terrified and trying to focus and SO much was going on at once. I was being told to keep really still and then I was being told to pump my fist and of course I was getting the instructions the wrong way round with the wrong hand and someone wasn’t able to find a vein, which hurt like a bitch and gave me the hugest bruise so the anaesthetist had to come and find a vein else where. It was all go. Finally the faffing seemed to be kind of done and the energy in the room became more focused on moving my bed and other things in the room. I was told to start thinking about that G&T and counting backwards and before I knew it I was out for the count.

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

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