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.