Cervical Cancer - my story

Last year was the year I was diagnosed with Cervical Cancer. Yep, me. A 37-year-old (just had a birthday) mum to two with no health issues (as far as I knew) was diagnosed with Cervical Cancer. This week is Cervical Cancer Prevention Week and in an effort to reduce risk I'm sharing my story. I should warn you it is an epic post (super long) -  I talk about how it came about, what happened, and the consequences - I hope that in some small way I can help you see that you really do need to go for your smear test when you receive your reminder.

Go make yourself a coffee, sit down, and read on...


My cervical cancer story


At 36 years old Cervical Cancer wasn't on my radar - not at all. As far as I was concerned I was a healthy (albeit overweight) mum to two who had plenty of years ahead of her before she needed to think about anything as scary as cancer. 

It never occurred to me that it can happen to anyone, at any time, even though I know this to be the case. I know plenty of young children to be struck with cancer and I know lots of people who are older that have had cancer, my father included. But for some reason I never thought I would be affected by it. Silly huh?

I hope that my story shows you, sitting there with your cup of coffee, that you need to go for your smear test as soon as that reminder letter arrives. It could make the difference between living your life and not...


You hate the smear test right?

Yep, me too. 

It's uncomfortable, embarrassing, sometimes painful. And then every time you go for that stupid test you receive a letter saying everything is okay. 

I started having smear tests when I was 25, much like most other women. As a busy mum to a little boy I didn't think much about it, I went for the "routine" test and a few weeks later got my results letter saying everything was fine. And that was the case the next few times too.

Because it was always fine I got into a routine of putting off the test. It was just so uncomfortable. I mean really - having a metal thing stuck inside your vagina and some woman (okay, a nurse, but still) poking around with a swab - it's not my idea of fun. 

It got to the point where I was leaving it months before booking the test.

January last year I received the "it's time" letter and my heart sank. It couldn't be yet, surely? Didn't I only have it done last year?

No. No I didn't.
It had been 3 years since my last smear test. Bah.

Again I put it off. I didn't book the appointment. 

When the Hubby found my reminder letter on the kitchen counter a few weeks later he went mad. He told me I should've had it done already and he wouldn't let me do anything else until I booked the appointment. Under duress I did.


On the day of my appointment I went to the doctors surgery, nervous tummy as usual, and sat in the waiting room knowing what was about to happen. Once in the examination room, having striped from the waist, the nurse poked around and within minutes it was over. Admittedly the nurse is always lovely, she asks about my boys and we chat about the weather. While I dressed she told me I should receive my letter - telling me everything was okay - within 3 weeks, and if I hadn't I should call the doctor's surgery to check in.

Three weeks to the day later I still hadn't received my letter and I was considering calling the doctor's surgery. Then I checked our post box outside...


Not what I was expecting


I opened the letter.

It was not the usual "All is okay!" letter.

Having never received a "there's something wrong with you" letter this one opened up a gaping hole in my stomach and made my heart race.

You see this letter said I had "high-grade dyskariosis" - whatever that meant. 

Panic struck.
Tears blurred my vision.
My heart raced. 

There is nothing that can explain the utter dread that filled my body that day. That letter was the worst I had ever received, up to that point. It didn't give me any information about what had been found, all the letter said was to expect a further letter from the hospital asking me to go for more tests.

As anyone would these days I Googled the term "high-grade dyskariosis" and, surprisingly, felt a little better. My research revealed that just because you have abnormal cells doesn't mean you have cancer. In fact the abnormal cells can go away on their own! Most of all though I was relieved that it didn't mean I had cancer. 

Phew.





We cannot direct the wind but we can adjust the sails.

Anonymous





The hospital appointment


My mind was filled with cancer and high-grade dyskariosis thoughts for days until another letter arrived telling me to attend the hospital for a Colposcopy (someone looking at my cervix through a microscope).

Basically a doctor would have to have a look and decide what the next steps should be, if any. 

So off I went to the appointment not really knowing what to expect.




Lie back and watch the dolphins


At my appointment I spoke to a lovely doctor who told me what would happen.

They would squirt some dye inside me so they could see the abnormal cells and then they would look at them using a microscope. 

Nothing was going inside me.
Yet.

But, if they found something they might decide to cut. 

Cut?! That got my heart going.

I was taken into a room to change (all the while my stomach doing somersaults), I put on a hospital gown and followed the nurse into a room with a large chair in the centre. Looking around the room I noticed a small table with the microscope, along with a few other scary looking utensils. My stomach flipped again. The chair, which I was told to sit in, had stirrups to rest my legs and I was asked to sit back and try to relax. 

I had to laugh. I mean, really... Relax?!


As I sat/laid there, with the doctor looking at my cervix while the nurse chatted to me about my boys, I did notice something that made me smile. 

On the ceiling above my head was a picture of dolphins. They were jumping out of the ocean, sun bouncing off their skin and splashes of water sparkling in the sunshine. It made me smile for two reasons: 1) I like dolphins, they're serene and calming creatures and for some reason they make me think of freedom, and 2) someone had thought about what you're looking at when you're in that chair and tried to make it more relaxing. I had to appreciate the effort.


Cutting time


After looking at my cervix for a while the doctor said he could see the abnormal cells and wanted to   cut them out (LLETZ procedure). It was explained that this was the best course of action because the cells looked like they had progressed. I was shown a picture from the microscope.

All I could see was flesh. A circle of flesh, red and angry-looking, but on the inside there was this huge area of white flesh. This was where they'd squirted the dye and it had reacted with the abnormal cells. The white area was the bad area and it needed to be cut out.

I was assured it wouldn't hurt.

Using some sort of patch they numbed me, my legs shook uncontrollably but I was assured this was completely normal. It made the whole experience a little worrying, I had no control over what my legs were doing. 

So, as my legs continued to shake, I had a doctor peering into my vagina cutting away a part of my cervix using some weird looking utensil, all while the nurse chatted to me about the lovely weather we'd been having. She was doing her best to distract me, bless her, and if I'm honest it kind of worked. While the procedure was uncomfortable I can't say it actually hurt.


Recovery


As far as the doctors were concerned that would be the end of it. The area they had cut out would be sent to the lab for testing but I shouldn't expect any further treatment. The usual next step from this was to continue with regular smear tests but that's it. I was told to expect a letter as confirmation of the results but I shouldn't need any follow up. 

So that was it - kind of. No more cutting, and most importantly - no cancer.

Having just had surgery I was sent home with a list of restrictions.

No swimming.
No exercise.
No sex.

For at least 4 weeks, but I was told to expect the recovery to take up to 6 weeks. 

To be honest I didn't take the "surgery" seriously, I had a little pain after the procedure - kind of like strong period pains - but I didn't think they would last. 

I was wrong.

For the first few weeks I found it difficult to walk even short distances and the pain continued for weeks. I was taking lots of pain killers and wondering when the pain would subside.

The 6 weeks seemed to drag. I don't know if it was the restrictions or the mental implications of the surgery but I didn't do great. Some of the time I felt like my insides were being ripped out, sometimes I just wanted to sit in a hot bath, which I wasn't allowed to do. It was tough and I hated not being able to swim or exercise. 


Another letter?!


There's something about the letters that the NHS send out in these situations, they give you just enough information to scare the living daylights out of you but not enough that you can feel any better.

This letter scared me though. 
Truly scared me.

This letter said the doctors wanted me to return to the hospital to "discuss results" of the LLETZ procedure. I knew that couldn't be a good outcome given the doctors had already said I shouldn't need any more follow up. 

In the time between having the Colposcopy and LLETZ procedure I'd convinced myself that everything would be okay, they had cut out the offending cells and it would turn out to be nothing.

But that letter...

They wouldn't send a letter like that without it being necessary, would they?


Cervical cancer


Another hospital appointment.

The Hubby came with me and when it was our turn we were taken into the smallest doctor's office I have ever seen. The Hubby and I only just fitted into the room with the doctor and his computer.

He (the doctor) started off by going over the procedure I'd had done to confirm it was all correct but he took his sweet time getting to the point. He explained that the cells they cut out had been sent to the lab and someone had examined them under a microscope. 

Then I heard it - the word that fills anyone with absolute fear. 

Cancer.

I listened to the rest of the things the doctor said but I wasn't really there.

I had cancer.

Or I'd had cancer?

The doctor explained they found two areas of cancerous cells, one was just 0.3mm in size, and the other 0.5mm in size. They thought they had cut it all out but "just to be sure" they wanted to do ANOTHER LLETZ.

If I'm honest I think at this point I was in shock. I smiled and nodded along agreeing with the doctor. 

But in reality I had just been told I had cancer - or I'd had cancer, one or the other. It was necessary to have a second LLETZ to make sure all the cancer was gone. They had to do more surgery, cut away MORE of my cervix, just to be sure. I mean, yes, fair enough - I'd rather that than have the cancer grow, but it was a shock. 

I was given another appointment for the second LLETZ right then, while I sat in the doctor's office.


LLETZ number 2


The first LLETZ didn't hurt, it was just uncomfortable - like the smear test - and I expected the second one to be the same. 

I was wrong. Again.

The second LLETZ DID hurt. It hurt A LOT.

Using the same numbing as before the doctor thought everything would be okay but it wasn't. Each time the doctor tried to cut I cried out in pain, it was not fun - I was in a different room this time so there wasn't even a picture of dolphins to calm me. Eventually they had to use more anaesthesia and my legs shook more than before. I had tears in my eyes and the pain wasn't gone. As a woman who has given birth I've been through a lot of pain and while this wasn't anywhere near as bad as childbirth it was enough to make me cry.

Thankfully it didn't take long to finish.

Getting dressed after the procedure was also painful, it took a while to be able to pull up my jeans. I ached - think HUGE period pains that spread up your stomach, around your sides, and down your thighs. 

Once in the recovery room I had to sit for longer this time. Much longer. I was offered a cup of tea , which I thankfully accepted, and I sat for a good 20 minutes. While sitting there the doctor came in to talk to me again, this time chatting about next steps. 

As I sat listening to him I realised he was preparing me for the possibility of finding more cancerous cells.





Thinking about Hysterectomy


In a matter of a few months my life was looking like things might change drastically. I'd been diagnosed with cancer for a start, not great right?

I had no idea how to feel about it - being diagnosed with cancer is a serious thing, even if they'd already cut it away. I couldn't get my head around whether or not I had cancer - it was there and had been cut out but it could still be there. 

Add that to the fact that the doctor was talking to me about having a hysterectomy if they found more cancer and my head was a complete mess. Having a hysterectomy at 36 was not something I had ever considered. 

It's not that I want more children, I don't, but having a hysterectomy so young has long-term health implications. It's not as simple as just having it done and everything will be okay.

After leaving the hospital I had to think about what I would want to do if things came to the worst. I was told that if they did find cancer I wouldn't have a choice, they would do the hysterectomy, but if they didn't then I had choices.

I could go ahead and have a hysterectomy - by choice. That would eliminate the chance of the cancer coming back. Or...

I could leave things as they were - risking the cancer coming back (although it is highly unlikely).

In the weeks following my second LLETZ I thought about this constantly. The Hubby and I did lots of research and read about the long-term implications of having a hysterectomy so young. For me it wasn't about preserving the chance to have more children, I'm done with that now, but it was about preserving my body. 

I didn't want to make a decision that might cause complications later.


2 weeks later


Two weeks after having my second LLETZ my doctor called me. My doctor has NEVER called me. When he said who he was my stomach did a flip (yes, again!) and I immediately thought it was bad news. Luckily he didn't give me much of a chance to panic.

They confirmed there was no more cancer.

And I cried. I balled like a little baby.

The relief flooded through my body and I couldn't keep the emotions in any longer. The stress, the wondering about the future, it was all over.

I was one of the lucky ones. 

I was still recovering from the LLETZ but I felt so much better. I was able to start thinking about other things and my own health wasn't an issue any more.


Not the end


It took me a long time to recover from the second LLETZ, in fact it took a lot longer than 6 weeks. I was suffering with pains for at least 6 weeks and even after that I couldn't walk for more than 4 miles without feeling pain. 

Even though it didn't seem like a "proper" surgery that second recovery period made me realise that I had been through something serious. My body was telling me to slow down and I had to obey. It took a long time for me to feel right again.

After everything that has happened I'm now on the list to have smear tests every 6 months.

I can hear you as I write that...  You're thinking "ugh, how horrid" right? And I was too.

But you know what? 

I would rather have 6-monthly smear tests and be sure the cancer isn't back than have the cancer grow again without me knowing. 

As I write this post it is almost 8 months since I had my diagnosis and, although I'm fully recovered, I'm still having issues. Things like light bleeding after sex, pains where there were none before, and the mental changes that have happened as a result.

Before my diagnosis if I saw light spotting between periods I thought nothing of it, it happens sometimes. Now though the first thing that comes to mind is that the cancer has come back. Every single time I see blood when there isn't supposed to be any my stomach does a somersault and the day I sat in the doctor's office comes back into my mind. 

This year hasn't been an easy one, and sometimes it's hard to admit to myself that my experience has changed anything. I mean I didn't know I had cancer and before I knew it the doctors had cut it out. Sometimes I feel like a fraud. I feel silly saying "I'm a cancer survivor" when there are so many people out there having to through chemotherapy or worse. But I have come to realise that I am one of the lucky ones.

I am still here. 
I am not going through chemotherapy.
I have the time and the drive to share my story and hopefully more women will go for regular smear tests as a result.





Live life to the fullest, and focus on the positive. 

Matt Cameron





Go for YOUR smear test


Like I said, I was oblivious to what was going on inside my body. I had no idea that cancer was growing and that I was putting my own life at risk by delaying my smear test.

I was diagnosed with cancer and that diagnosis is going to affect me for the rest of my life. But it didn't take my life and that's the important bit.

I wanted to share my story with you, and if you got this far thank you for sticking with me. I'm also over on Motherhood The Real Deal today with a guest post Cervical Cancer - what every woman needs to know, I wrote this post to help you recognise symptoms and be aware, if you have time I'd love you to stop by. This week I'm focussing on Cervical Cancer Prevention Week so you can see it can happen to anyone. Me, a normal (somewhat!) mum with two children, was diagnosed with cervical cancer at the age of 36.






If I hadn't gone for the smear test that cancer would be growing right now, silently spreading through my insides. 

The smear test can save your life.

It did mine.




Motherhood The Real Deal