Cervical Cancer Blog Eight aka Diagnostic Imaging

“Gosh, you know, I would just LOVE to stay completely motionless for twenty to thirty minutes whilst being held inside a long, noisy tube as it scans for me the spread of the cancer I have just been diagnosed with. Even better if I get to do it twice in one week!”

Said absolutely no one in the history of humankind, EVER.

Welcome to Diagnostic Imaging week!

Four days after my diagnosis I received a call from my Clinical Nurse Specialist (CNS) to explain that I would be booked in for the following procedures: –

• PET-CT scan
• MRI scan
• Pelvic examination under anaesthetic

The ones I was most nervous about were the first two – for the third I knew I would be out like a light so wasn’t particularly bothered when she announced it – but the first two? Holy hell.

There is so much pressure about having to hold yourself, incredibly still, for a lengthy period of time so that the medical people can get those pictures they desperately need. Oh, and they have to have them now so that they can proceed with your treatment plan in accordance to their timetable. So, if you screw up and move during imaging then those pictures are useless and you have to do it all over again. You’re letting them down, you’re letting your team down and you’re letting yourself down, plus you’re costing the NHS money for each time they use the machine on you.

I thought I felt pressure when taking selfies with friends but this was a whole new level. By the way did I mention my slight claustrophobia?

You know what? It wasn’t fun but it was fine. If I, the biggest panicky wuss in the world, can do it then so can you. Let me take you through ‘Gerry’s Guide to Diagnostic Imaging’ and reassure you that things are going to go ok.

Disclaimer – for one of them I was helped by my new friend diazepam. Sometimes you just can’t go it alone.

A few weeks back I wrote a post about staging and I mentioned things like lymph nodes and metastasis. The diagnostic imaging is what needs to happen to see what’s occurring inside your body and to see whether the above has happened and so they can officially confirm your staging.
One woman on the Jo’s Trust forum had been told by a friend that, because she had been booked in for the scans, this meant that her cancer had probably spread. Luckily the forum posters that replied to her called it the same thing that I am now. Bullshit. It’s bullshit.

They have to check. Even if they are 99.9% sure that there is no lymph node involvement and no spread they need to do these checks to make sure. Let me put it this way; I process payroll. As part of that payroll process there is a checking component. Even if I am 99.9% sure that I have input people’s payroll correctly, so certain in fact, that I feel like I don’t even need to check it – I will still check it. Why? Because I like accuracy and contrary to belief I do at least try to do my job properly.

If I missed a check and was in that 0.1% error margin than I have a bit of egg on my face. Someone’s pay is gonna be wrong. Then it becomes a lot of fixing and apologising and feeling like I’m shitty at my job. If the doctors missed their check and were in that 0.1% margin then the repercussions could be far more tragic.

Getting invited to these scans doesn’t mean anything other than the NHS are doing their job.

Seven days after diagnosis I was invited to my PET-CT. Here we go.

PET-CT Scan (Position Emission Tomography – Computed Tomography)

This does two things:

1. Takes a series of x-rays from all over your body
2. Shows up areas of your body where cells are more active or abnormal then usual (using an injected radioactive tracer.)

This is basically the posh scan of all scans.



If you could line up all types of scans in a row this is the one you would marry and bring home to your mum. It is, without a doubt, a very expensive piece of machinery. So expensive in fact, that they aren’t in every hospital and sometimes you have to travel to get to one of these. Lucky for me there was one in the Diagnostic Imaging Centre in the Royal Surrey County Hospital in Guildford. Convenient.

There is also a waiting list for these bad boys. As a cancer patient, you get bumped up the list first. Sorry back pain people, if this machine was a nightclub I would be a….

Here is a link to some wonderful information on PET-CT scans. If you’re ever invited to a PET-CT you should get a little booklet telling you how to prep. This mainly equates to when you need to stop eating food and whether you need to stop drinking. For PET-CT they encouraged me to drink a lot of water beforehand because it makes the radioactive trace go around your body faster.

You may be asked to change into a hospital gown (I wasn’t) but you will have to remove any clothes that contain metal. I managed to get away with removing my boots and my bra (it had metal clasps) and so I just let my boobs flop out. Under my dress of course. Get your minds from the gutter.

When I arrived, I explained to the nurse that I was nervous and claustrophobic and she did the most wonderful thing. She took me into the room so I could see the machine first. It looked like this: –



Ok that’s a lie. That’s from Stargate. Ok, it looked like this: –



The most awkward thing was hopping up onto the bloody scanning bed. I am a hobbit. They do not design these things with steps.

But I’m moving ahead too fast, before you get scanned the nurses need to prep you with the radioactive treatment. You get used to watching blood go out your arm and watching other substances go in and this is both quick and painless.

Now this isn’t an image of the actual PET-CT suite I was in but out of all that I Googled it is the most similar: –



As the PET-CT needs to view active and abnormal cells they need to inject you with a radioactive tracer that shows up these areas when they do the scan. This tracer is injected in a glucose solution for the primary reason that cancer cells love sugar. They love sugar like Cookie Monster loves Cookies.



Please don’t ask me if I think that sugar causes cancer. Probably. I don’t know. I have a diet that is higher in sugar then it has any right to be and when I think about whether I should change my lifestyle and diet to avoid ever having cancer again I take it seriously. And then I eat some serious cake.

You get put into a little room – check out the suite picture. There is a chair, a bed, a nice warm radiator and a blanket. They inject you and then you lie down for about an hour. Muscles use glucose for movement and so if you were to perform a lot of movement then all that sugary goodness goes straight to your muscles and not the areas of focus. This means that the imaging would be all wonky.

“But I can’t possibly just lie there for an entire hour!!!” Well you can get up and go to the loo, they just don’t want you doing star-jumps on route. As it turns out I fell asleep. Did I mention the radiator and blanket?

Then they wake you up and guide you in. As I sat in the waiting area I saw they had a whiteboard with a quote from one of our most profound philosophers; Winnie the Pooh.



It made me smile.

The scan took about 20 – 30 minutes and they had the radio on the entire time as they try their best to make it as relaxing and calm as possible. The room is quite cold and so they will wrap a blanket over you but my first main tip is get into a comfortable position because once you are ‘in hold’ so to speak you can’t move. My thoughts are with you if you get an itchy nose. Like I did.

The machine is not that bad. Look at the image again. The machine is like a doughnut – not too deep and with a large hole in the middle. This scan requires full body images so the bed passes your entire body through the hole head first. My other main tip – close your eyes.

My body was never fully in the machine at any point and I am a shorty! When my top half was in the machine, my legs from my knees down were outside of the hole. When they passed the rest of my body through then my arms were outside from elbows up.

The space of the hole is also surprisingly substantial with your face no way near the top of the machine so it doesn’t feel too enclosed. Not that you want to but if you find yourself panicking then you have plenty of space to wriggle your way out. But you won’t need to. Honestly, I was unexpectedly impressed.

Another plus is that the machine is very quiet. Aside from a hum there was no noise other than the radio and the radiographer talking over the intercom when they needed to.

Would I do it again? Well if I have too, yes. Obviously. Would I be worried about it again? No probably not. I’d be normal levels of nervous but this scan is marvellous.

I would have had images that looked a lot like this: –



These aren’t mine but these are images from someone with cervical cancer. You can see the cancer showing up due to the radioactive tracer in the glucose injection as a hot white blob.

I am sad to inform you that I have not gained radioactive powers and so I need to return the cape. And the sidekick. And the Germobile.

Two days after the PET-CT I attended my MRI.

MRI (Magnetic Resonance Imaging)

This uses magnetism and radio waves to get a different, yet similar, set of images of your body and apparently focuses on soft tissues like organs and lymph nodes.

If I’m honest I have no clue why two different scans need to be done especially as the PET-CT seems to show a lot of detail. But then as the PET-CT shows activity this may be needed to show a current overall picture. Still no clue though. Answers on a postcard please.

MRI’s are more common and can be found in pretty much every hospital.

This isn’t so much the scan you would marry and bring home to mum as much as the one that you date a few years before you find The One.

Here is a link to some more information.

Again, before you’re invited to a MRI you should get some information on what you need to do to prep usually around food/ drink intake. This machine definitely requires no significant amount of metal to be on your body as it operates based on magnetism.

Huh. It’s the machine equivalent of this dude.



I didn’t have to change into a gown for this scan either but again had to ensure that nothing I was wearing contained metal so I just got pretty comfortable with the idea of my unsupported boobs flopping about.

Now this is the MRI machine: –



It differs from the PET-CT in these three things: –

1. It is deeper
2. The hole is significantly smaller (ooh that’s what she said)
3. It’s noisy

I knew before I even had the MRI that I was going to struggle with it and the idea of having an MRI freaked me out. So here is a tip: –

Sedative. Get one.

If you are nervous about small and noisy spaces and think that your anxiety levels will shoot through the roof than make sure you head down to the GP and ask for a sedative because you’re due to have an MRI and are pantsing yourself.

This is not uncommon. MY GP prescribed me diazepam without a second thought and my CNS even suggested that I get a sedative when I said I was nervous. Remember last week’s mantra? Do what you need to do.

If you’re taking a sedative you will need to arrive at the hospital one hour before your allocated scan time. This is because they want a nurse to be with you whilst you take the sedative to make sure you’re following the instructions. Key thing with this is that you will need to find a lovely person to take you to the hospital and back as you won’t be able to drive or travel alone.

I took two 5mg diazepam, had my dye injected and during all this….



I was as doped as fuck.

It was beautiful.

My memory is hazy but the lovely radiographer – her name was Eileen – took me to have the MRI. I was wrapped up in a blanket and was given my emergency button to press if I needed to speak to someone. Then they put the cage on me.

Yeah that’s also how it differs from the PET-CT. Luckily, I was going in feet first as they didn’t need to take a lot of images of my body aside from the pelvis but they had to put a cage and some straps over my waist and legs. If I hadn’t had the sedative I would probably be doing this: –



As it stands I was blissed out on another planet so it didn’t bother me at all.

Because the machine is noisy they can’t play a radio like with the PET-CT however they do have headphones where they play music to you. Eileen promised me that she would try and get the CD working. She did.



Two things I didn’t know before I had my MRI: –

1. If you are very nervous and the person with you doesn’t have any metal on they can come into the MRI room with you. I know I was dopey and spaced out and all he could see was the top of my head but it was reassuring knowing that my partner was in the room with me. He gave me a comforting pat on the head every now and then just to let me he was still there and hadn’t done a runner with Eileen. To be honest I think I would have done a runner with Eileen.
2. The machine heats up around the area they are investigating. I was a little forewarned about this by a friend who mentioned that her friend didn’t know that when she had a MRI. I was extremely grateful for this information. The fact that I needed the bathroom 5 minutes towards the end of the 30-minute scan plus the fact that I was doped up plus the fact that the machine was heating up around my pelvis led me to believe, for a few seconds of time, that I, a grown woman had in fact had a wee in a hospital scanner. I hadn’t. That forewarning saved me some mild trauma so I will pay it forward.

Would I do it again? Well same as the PET-CT – if I had too then yes. Would I be worried about it again? Yes. Definitely. The MRI is no way as big and spacey as the PET-CT but that is ok. Because I have found the true loves of my life: –


And this guy of course…



Gosh I love R2.

Gerry’s Tips for diagnostic imaging: –

• Try and stay calm
• Listen to the music
• Close your eyes and think of lovely places
• Tell the nurses if are nervous, they will help
• Bring a trusted love one
• Think of the motivational words of that chubby little cubby all stuffed with fluff
• Take drugs

Next week’s post will be on meeting the person who will stare at your naked crotch with more intensity then anyone ever has in your life. Next week we shall meet the operating consultant.

Cervical Cancer Blog Seven aka What Immediately Follows After Diagnosis

This week’s blog post is not going to have the lengthy title as promised two weeks ago but instead I’m going to simply call it ‘What Immediately Follows After Diagnosis.’ Although that is a pretty darn extensive topic I’ve broken it down into two (summarised) components: –

1. Coming to terms with your diagnosis and coping with your emotions
2. Telling people about your diagnosis and then trying to deal with theirs

This may not have a lengthy title but it is a wordy post so get your mugs of tea and a biccy handy.


What I found is that when you action component two you may also find that you are still working on (with varying degrees of success) component number one. You may find that you work on component number one way past treatment and beyond. In some cases, way beyond. For some people, way beyond will mean forever.

Or you may find that you choose not to action component number two at all. Look, it’s your cancer. Do what you need to do. That statement pretty much became my mantra. Do what you need to do to survive. Funnily enough after a cancer diagnosis survival doesn’t just mean, you know, physical survival (although that is an extremely pressing concern) but also mental and emotional survival.

Let’s touch on component number one, shall we?

Coming to terms with your diagnosis and coping with your emotions

The way I feel now, writing this almost three months after diagnosis, is different to how I felt the day after. How I feel in another three months may be different still. It may be better, it may revert to something worse. When ‘they’ say it’s a journey it is. It’s not mapped out, you don’t know quite where you’re heading, you don’t know who’s coming with you or who/ what you’re going to meet along the way. Oh, and you have absolutely no choice in the matter. Congratulations, you have just become this person: –



Lions and tumours and bears! Oh my!

When I left the consultation room I was handed, among other things, a hefty Macmillan book called ‘Understanding Cervical Cancer.’ In the book, there is an entire section on what you may end up feeling.

So….



DING! DING! DING! You are playing the Game Show of Life and have just landed on cancer! Along with that glorious carcinoma you have also won: –

• Shock and disbelief
• Fear and anxiety
• Avoidance
• Anger
• Guilt and blame
• Isolation

Some of these prizes you get to take home with you immediately! Others will just have to wait a few months – but don’t worry! You can get those ones when you collect your other prize: –

• Side effects from treatment

And the great news is you get to keep playing the Game Show of Life with the new bonus rounds of ‘Fear of Cancer Reoccurrence’ and ‘Fear of Getting a New Cancer!’*
*new prizes will be added on winning a bonus round, you can enter the competition more than once and terms and conditions may apply. No age restriction.

Oh jeez. All those feelings sound a bit shit, don’t they? But who knows what will happen or how you will feel. You may have none of them, all of them, a healthy dose of each spread over time or all in full whack. Remember, you’re on that non-mapped journey now.

Immediately after diagnosis I was fine. I was more than fine. Said all the stupid things that other people say to people who have just been diagnosed with cancer. I literally parroted ‘it could be worse’ at myself.

Spoiler: In less than five days’ time that exact same phrasing had me wanting to tear people a new asshole.

I was fine. Except I wasn’t. Then I was. Then I wasn’t. You can pretty much see how this went. The moment I cracked was when I started reading the treatment information from the Macmillan book.
You know, for light bedtime reading. Then I had a shower just so I could openly sob in it.

Overall, my initial stages of emotion (over the course of those first five days) went a little something like this: –

• Sadness
• Immediate acceptance
• Extreme positivity
• Intense productivity
• Sudden, inexplicable, wretched grief
• Intense stress
• Positivity again
• Stress
• Exhaustion
• More positivity
• Denial

Oooh! And all the above were accompanied by sudden stomach cramps and insomnia.

No. Sadly it wasn’t the cool insomnia.

Disclaimer: there was no making mad love to anyone on the heath. I had cervical cancer. Ain’t no one got time for that!

The problem with insomnia is that sleep is very important and everything suffers when you have a lack of sleep, including but not limited to, that positive attitude everyone wants you to have. When you only get two hours of disturbed sleep a night, on repeat for several nights, the world you are living in doesn’t look so shiny.

Also, it was during the night, when the world was all curled up and asleep, that the horrible, doubting and downright terrifying thoughts came out. As you can’t wake people up to share these thoughts you just have to share them with yourself. Over and over again. This makes you sad. Very sad. And lonely.

The beauty of this process is that even if your cancer is at the early stages and you are statistically unlikely not going to die from it you will, at some point, look around at everything and think I’m going to die. 

With that cocktail of insomnia, fear and all the other feelings mixing around in your brain you may not be, how do we put this? The best version of you. When people start telling you to ‘be positive’ (and you will have that) you may find that ‘anger’ and her friend ‘temper control problems’ kicks in.

It is now taking all your restraint and energy to pretend to be a decent human being that isn’t going to pummel the next person that says something stupid to death.

How exactly would that investigation go?



Police officer: So…. cancer didn’t kill them?
Me: No. But it appears my Macmillan cancer book did.
Police officer: Ok….

In those initial days after diagnosis I moved from being Dorothy Gale to becoming this guy: –



I swung from self-loathing at not having had my smear test sooner to sweet relief at having caught the cancer early. I would say to my partner how lucky I was that the universe had given me early stage cancer immediately followed by me going ‘hang THE FUCK on, the FUCKING universe didn’t have to give me FUCKING cancer at all actually! BOLLOCKS!”

Inside your raging mind there is a battle to end all battles. You have just engaged in an act of war. With yourself.

Your brain is proudly exclaiming, “CANCER CAN TAKE MY CERVIX, BUT IT WILL NEVERRRRR TAKE MY FREEEEEEDOMMMMM!!!!….”



…. followed by prep for 3 hours of continuous crying.

Externally? You are just staring out of the window, clutching a mug you haven’t drank from, whilst your partner twitches nervously behind you because you’ve just been staring… for quite a while now actually.

It’s ok. You are now this person: –



Oh, Frodo is totally relevant.

Let’s guide you onto component number two.

Telling people about your diagnosis and then trying to deal with their emotions

During your journey that you have now undertaken (in my case to literally destroy the one ring) you have a Fellowship if you will.



Told you Frodo was relevant. What, you don’t think I don’t plan these things through? Do you know how much editing I do? These posts don’t just write themselves you know.

Anyway…

You have a Fellowship.

I know beforehand I said ‘you may find that you choose not to action component number two at all. Look, it’s your cancer. Do what you need to do’ and it truly is your cancer so telling people is up to you but let me stress this again.

You have a Fellowship.

The posts I have read on the Jo’s Trust forum or via Macmillan do highly recommend that you tell people. Not necessarily everyone and not necessarily everything (you don’t have to do a me) but the people who told no one at all expressed the wish that they hadn’t kept it to themselves.

The next undetermined length of time isn’t going to be easy for you, so find someone you trust and tell them at the very least. You will need the support.

Who you tell, what level of information you give and how you choose to tell them is completely up to you. I had a four-fold approach: –

• Face to face
• Over the phone
• Private message
• Public Facebook announcement

Face to face was reserved solely for my partner and my parents. I started to tell some friends over the phone because I didn’t want to break the news in such an impersonal way but this got exhausting. Realising I couldn’t keep that up I then went the private message route (I even banded people into friendship groups that knew each other for maximum efficiency – atta girl!)

Then, when I knew the message was filtering its way through the masses I decided to go public. Pretty much because I know Chinese Whispers can get a lot of things wrong…



… and if I wanted to avoid the wrong information getting about it made sense to just declare it.

When the messages start coming in you may find that you start crying except it’s a different type of crying. Because everyone likes to feel supported, it makes you feel good knowing that people care and when you feel particularly vulnerable those messages are food to your soul. Not even melodramatically joking.



Everything seemed to be fine. The news was out there, people knew. Then around 10pm that same evening is when I started asking my partner if I genuinely had cancer or if I had just made a whole bunch of people worry for nothing.

Actual conversation: –

[scene: living room in suburbia. It’s a cold night in January and the wood burner is alight. A STOIC MAN sits on the sofa, stoically doing stoic man stuff, stoically. There is the sound of footsteps on the stairs and an AWESOME WOMAN enters the room being all awesome even though her hair is just not good today. She surveys the scene and the STOIC MAN.]
Woman: So… I’ve just told a whole bunch of people that I have cancer
Man: Ok… how do you feel?
Woman: Absolutely fine!
Man: Good, I’m really glad.
Woman: Though thinking about it… I don’t think I should have told them that I have cancer
Man: Why?
Woman: Because it’s not cancer.
Man: Yes [looks less stoic and more confused] Yes it is.
Woman: But it’s not actual cancer though.
Man: No really. It is.
Woman: But on the scale of all the cancers in all the world [dramatically pauses for effect] mine isn’t real cancer.
Man: [pauses, considers above statement, takes some time to stoically yet supportively deal with statement] You’ve just been diagnosed with cancer, this is why you’re struggling. But it is cancer.
Woman: No I don’t think it is you know. I feel great.
Man: And that’s why it’s so hard, because you don’t physically feel any different then you did yesterday.
Woman: [takes a moment to consider his statement, nods in understanding] You know what?
Man: What?
Woman: I think I’ve cured it with the power of positivity.
Man: [pauses for quite a while, wondering how to deal with the stupidity of that comment in a stoic and yet supportive manner]
Woman: I think I should get in touch with everyone. Tell them not to worry and that I got it wrong.
Man: [speaking slowly as though talking to a small child or someone with reduced mental functioning] No, no. Don’t do that.
Woman: But I don’t want people thinking I’ve got cancer!
Man: [struggling quite visibly now] But…. you do…have cancer.
Woman: But it’s not real cancer.
Man: It’s cancer [is now very obviously physically restraining himself from committing acts of violence against his own self] You had three medical people tell you it’s cancer. It’s cancer.
Woman: [clearly not hearing a single world that is being said] You know, I think we can cancel those tests they want. The MRI and things. Pretty sure I don’t need them anymore!
[AWESOME WOMAN skips out the living room door pursued by FLOOFY CAT; STOIC MAN’s eye twitches. It does not ever stop.]

Just in case you think I’m making that up – ask my partner. This was a very real conversation back in January. Remember at the beginning of this blog post when I said: –

When actioning component two you may also find that you are still working on (with varying degrees of success) component number one.

…. well this demonstrates those varying degrees of success. You don’t know what telling people will do to you and when you start telling people you don’t know how they are going to react and you don’t know how you are going to react to their reactions and so on and so forth.

Tell people in whichever way you want and respond to their responses in whichever way you want. Don’t forget that this is your incredibly shit party that no one, you included, was wanting an invite for.

One thing must be made very clear to you now. You are not responsible for how the people you tell feel or for how they act. Try if possible to not absorb anything that doesn’t make you feel good right now. Dare I say it again? Do what you need to do to survive.

Like I said before, you are probably not the best version of you and sadly that includes not being the most resilient version of you.

I found that I was a confused and confusing mix of genuine positivity and of being as miserable and mopey as fuck. Because I am schooled at the Very British School of Social Politeness Where Your World Has Fallen into a Giant Cavern and Has Been Eaten by The Doom but You Don’t Want to Bring Others Down I was constantly reassuring people that I was fine.

Some people will take this at face value because cancer makes everyone uncomfortable and they would genuinely prefer to believe that you are fine. So, that’s what you tell them and yourself in the hopes that it will genuinely start being fine that you have cancer.

This is not sustainable nor should it be.

Disclaimer: if I tell you I’m great then I am great. I wouldn’t use excitingly upbeat words if I wasn’t genuinely great. Fine is just such a crap word which secretly means ‘I’m not fine at all.’

It would be nice if you could get a lid on your emotions before you end up telling others but sadly that won’t be the case. You’ll also end up absorbing the emotions and feedback of others so I share the next bit for your emotional preparation.

These are the categories of people you will now face when sharing your news: –

The Support (In Whatever Form That Takes)

These people will say the equivalent of ‘oh fuck, this is a bunch of fucking balls’ and you agree with them and go, ‘yep, a bunch of fucking balls’ and occasionally you talk about how you feel and update them with what’s happening. You also might have a bit of a laugh at the bizarreness of it all.

Proximity or closeness of friendship or the passing of time will play a part into the depth of support. Stay a few nights in your guest room? Drive by with a quiche? Quick text to say ‘thinking of you?’ Facebook message saying ‘sorry to hear this, so so sorry?’ Messages of support from people who are still reading the blog?

I cannot express enough how brilliant and amazing all of that is. Not even kidding earlier when I said it was food for the soul. It is.

If you are reading this and someone has just told you that they have been diagnosed with cancer and you are worrying about whether you should say anything. Do. Say something. Tell them they are in your thoughts. They’ll remember it and it will count more than you will know.

The Avoiders

This is only painful if you considered yourself a good friend to them or if you thought that they would be someone who would get in touch at such news. And then they don’t.

Honestly don’t overanalyse this one.

They could be dealing with some awful stuff going on in their own lives. For some your news is a reminder of something they have gone through that they would rather forget or it is a reminder of a time when they watched someone they loved go through a painful process and they are just hurting too much to say anything.

For other’s they just don’t like, or aren’t comfortable with, disease or get very uncomfortable at being reminded of their own mortality. I’ll tell you one thing cancer does – it shows a mirror up to your face and harshly reminds you that you are not going to last forever.

Some people just don’t know what to say.

This is normal.

The Deniers

Not necessarily denying that you have cancer but denying the extent of its severity or the fact that it means you might be a little different in the upcoming months. Or you know, forever.

I had a friend query if my cancer was invasive. The conversation went a little like this: –

“Yes, yes it’s invasive.”
“Are you sure?”
“Yes! If I don’t take the fucker out it will keep growing and will eventually cause my death. Probably not in the next few years but at some point, and that is why we’re not leaving the fucker in there!”
“But is it actually invasive?”
“Arfdjdshfkhdfskjhdfjkhgkdfgdf"

Obviously, denial doesn’t just happen to AWESOME WOMAN.

When you say that you’re fine to this group that’s all they will hear. This is because it’s what they want to hear. They don’t hear “I’m just about holding on but I can see that if I tell you any of this, how I actually feel, then you will run because it’s becoming apparent you can’t handle it.” So you say ‘I’m fine’ and then they go off and tell others that you are fine.

This group may also genuinely interrupt your positivity and positive outlook to your cancer treatment to mean that you are genuinely just absolutely fine with having cancer.

I’ll let you into a secret: –

You can be genuinely upbeat, positive and forward future thinking about your cancer. This is a truth. But no one in their friggin’ mind, no matter how ruddy upbeat they are, will ever be fine with having cancer.

Cancer eh? Complex.

The Know It All’s

The avoiders don’t know what to say. This group? Oh, they have something to say. And they will say it. They will tell you what you should have done, what you should be doing, how you should be feeling and will helpfully point out that there is always someone worse off then you. They will give their advice because they read an article about your cancer treatment one time and even though you didn’t ask for their opinion they feel that you need to have it anyway.

I think they’re being helpful. I think.

I am planning in a later post to put together my top phrases of what not to say to someone when they have cancer because enough time has now passed for me to have a bit of a giggle about it!

Remember these are the raw days. You are processing your emotions and others are processing theirs. It’s hard to know exactly how you want people to respond because you don’t know how you want them to respond. You don’t know how to respond yourself. Even if you think you are behaving abnormally I can assure you, you won’t be. Do what you need to do but take it easy on yourself.

I know Gandalf said, ‘you shall not pass’ but I like to think that’s the rallying battle cry to the cancer. When horrible stuff happens, I prefer to think of this one: –



PS. I feel like my blog this week is sponsored by Lord of the Rings. It isn’t. I’m just such a nerd. Next week’s blog post about my PET-CT and MRI scans will be sponsored by Stargate. Kidding. Sort of.

Cervical Cancer Blog Six aka Staging

Interrupting my regular scheduled blog post with a… well, a regular scheduled blog post.

The next post I do will be entitled ‘How to Tell Friends and Family that You Have Cancer Whilst Making It Sound Like You Have Nothing More than a Common Cold so that You Keep Their Spirits Up While Somehow Simultaneously Convincing Yourself that You Have Cured Your Cancer via the Power of Positive Thinking Because the Brain Gets Weird When it’s in Denial.’

This week’s post is more simply entitled ‘Staging’ and is another ‘biology lesson’ of sorts except this time it’s on the staging process of cervical cancer and what each of those stages mean.

Yes, if this were a TV show it would be described as a ‘filler’ episode!

Are you ready? Anyone got an apple for teacher? Well my subtle little hint a few posts ago to SEND ME PIZZA has been ignored so I’m not holding out much hope.

Now I don’t know how staging works for other cancers so this is solely focused on what happens when they stage you for cervical cancer. Sorry!

What I always thought is that they would need to run the diagnostic tests before they staged you and maybe in other cancer cases they do but it seems that with cervical cancer they have a good indication of what your stage is at the very beginning. The diagnostic tests seem to be confirmation that their initial diagnosis is correct and they need to run a whole bunch just to make sure the pesky bastard hasn’t gone off and done more damage.

From the sounds of it, it is very unusual and uncommon for an initial staging to differ once they’ve done the tests. It does appear, based on the Jo’s Trust forums, that this can happen on occasion but can swing either way. The staging may have been initially high and after tests it’s found to be lower or the staging was lower but something unexpected was found in the tests and so the cancer has been restaged higher. Rest assured that when the medical team give you your initial stage they are confident that it is the stage of cancer you have. Their goal is not to cause any unnecessary worry and they wouldn’t give you your stage to change it arbitrarily.  

I won’t get into diagnostic testing in this post because that is yet to come. But I have already had them done…. ooh Twilight Zone, Gerry is both in the past and present… do do do do do do….

Ahem. S’cuse me.

When staging it appears hospitals go off a ‘TNM’ system. This will now sound like a weird Sesame Street episode called ‘T is for Tumour.’

Pipe down guys, I got this. 

Well the TNM looks like this: -

T – Tumour (told you!) – describes the size of the tumour

N – Lymph Node – indicates whether any cancer is present in the lymph nodes (turns out the lymphatic system is very important in the human body and so I will be doing a section on these little beauties at some point)

M – Metastasis – this refers to whether cancer has spread to other parts of the body. Apparently if cervical cancer has metastasized it will spread to regional lymph nodes, lungs, liver, bladder, vagina and the rectum. For such a small area to get cancer it can cause some big problems.

Lymph Node staging is either: -

·         NX (can’t be assessed)

·         N0 (no lymph node involvement)

·         N1 (lymph node involvement)

I now have no pelvic lymph nodes because they needed to take them out and have a peek for cancer. Luckily, I was N0. If you find yourself with lymph node involvement (regardless of tumour size) it means that your treatment plan will move beyond surgery.

Metastasis staging is either: -

·         M0 (no spread)

·         M1 (spread)

Again, I was lucky and had M0. For those with M1 it will again mean that your treatment plan will move beyond surgery.

I don’t know a great deal about what happens to patients if they have N1 or M1 and so I won’t speculate as to the treatment plans.

Tumour staging is far wordier which is why I have left it until the end. This bit gets medical (thank you to the various sites I have borrowed this from) and I have included handy diagrams as well (I have not drawn this via paint you will be pleased to know).

Staging: -

Stage 0

This is not considered cancer. Any cancerous cells that have been found are confined to the surface area and are not invasive. Some sexy words used to describe this are carcinoma in situ (CIS) or cervical intraepithelial neoplasia (CIN) grade 3 (CINIII) – try saying that three times when drunk!

Although not cancerous it is important to understand that these stage 0 calls can become cancerous if left untreated. This is where those smear tests and LLETZ procedures come in handy. Remember these guys: -

Yeah you do.

Stage 1

It is now cancer and is now invasive. This stage means that the cancer is contained within the cervix and hasn’t spread anywhere else. This stage and stage 2 contain categories and subcategories just to throw people into more confusion. I’ve done the best I can here but I won’t be testing you so rest easy if none of it makes sense.

Though I am now tempted to throw a pop quiz in…

Stage 1A: Very small amounts of cancer, less than 5mm deep and less than 7mm wide and can only be seen under a microscope.

Stage 1A1: The cancer is equal to or less than 3mm deep and less than 7mm wide

Stage 1A2: The cancer is between 3 – 5 mm deep and less than 7mm wide

Stage 1B: Cancer can now be seen by the naked eye and measures 4cm or less or can only be seen under a microscope but is more than 5mm deep and more than 7mm wide

Stage 1B1: The cancer is not larger than 4cm

Stage 1B2: The cancer is larger than 4cm

Stage 2

Cancer has now grown beyond the cervix but hasn’t reached the lower part of the vagina or pelvic wall and hasn’t reached the lymph nodes: -

Stage 2A: Cancer has not spread into the tissues next to the cervix (this is called the parametria) but may have grown into the upper vagina

Stage 2A1: The tumour is not larger than 4cm

Stage 2A2: The tumour is larger than 4cm

Stage 2B: Cancer has spread into the parametria

Stage 3

Cancer has now spread into the lower part of the vagina or pelvic walls but not to the lymph nodes or any other areas.

Stage 3A: Has grown into the lower part of the vagina but not the pelvic walls

Stage 3B: Has grown into the pelvic walls and may have blocked both ureters but hasn’t spread to lymph nodes or other areas. Or, the cancer has spread to the lymph nodes but not to other areas.

Stage 4

Cancer has spread to other organs.

Stage 4A: Cancer has spread to bladder and/or rectum but nothing else.

Stage 4B: Cancer has spread beyond the pelvis to other organs such as the lungs or liver.

So there are the stages of cervical cancer. A shorthand version of saying what stage cancer you have/ had is: -

·         1A through to 1B1           Early Stage

·         1B2 through to 4A           Locally Advanced

·         4B                                       Advanced

How you are staged does impact on survival rates but I won’t go into that in detail here. Obviously the earlier you are staged and the more contained any cancer is the higher the number will be in front of the percent sign.

The stage you are given will also have an impact on the type of treatment that is given to you. As a rough rule of thumb (remember everyone is different and unique and these may vary) it commonly looks like this: -

Stage 1A1 – conisation or hysterectomy (the hysterectomy is often dependent on age and childbearing status so if you are done with having children they may well go for the hysterectomy)

Stage 1A2 – 2A – trachelectomy or hysterectomy (1B2 and 2A2 often have chemo-radiation as well as surgery. Trachelectomy's seem to be dependent on a few factors as well; namely whether you are done having children and sadly, whether the postcode lottery of the UK NHS allows you to ‘win.’)

Stage 2B – 4A – chemotherapy (usually no surgery at this stage)

Stage 4B – palliative therapy (this focuses on providing pain management and symptom relief and is not necessarily curative)

I was staged at 1B1 which meant that I was at the later stages of early stage cancer. I am fully aware of my luck and as I keep reiterating (because I know now how important it is to attend smear tests) if I had decided to ignore the symptoms that were presenting themselves for any more length of time the stage may have looked very different.

If we were to add all the staging components together mine would be classified as: -

T1b1, N0, M0

But because I’m so much more than a disease here are some other letters: -

BSc, MSc, CIPD

(Hey I worked hard for those. Fine, semi-hard).

Oh, and here’s one more: -

I have suggested that my brother get the above as a full back tattoo to honour me but so far he's not buying.

Oh ‘fun’ fact (I am aware that this is not, in actuality, fun):

The staging process was determined by an organisation called FIGO or the ‘Federation Internationale de Gynecologie et d’Obstetrique.’ This organisation was founded in Geneva, Switzerland. Switzerland have provided the world with some very special things: -

And the most special of them all: -

That’s it for this week’s special staging lesson. Next week we’re gonna be talking about feelings and shit.