Sometimes life will throw curveballs at you.

You’re happily beavering away at a job you love and you’re made redundant.

You marry the man of your dreams only to discover that he has somewhat different ideas about fidelity to you.

You’re filled with joy, travelling through the US when you start to bleed and are diagnosed with cancer.

That last curveball was thrown at me in December 2003. And it’s that curveball I want to talk about today. Because as well as being a changemaker, you are a human being.

You have a life.

And as joyful as I hope that your life is, sometimes it won’t be.

And I want you to know that I – and Actually – are here for those times too.

So here goes…curveball city!…five of the many things I learnt from cancer.

 

YOU DON’T KNOW UNTIL YOU KNOW

This is a lesson I have repeated several times in my life. You don’t know how you’re going to react in a specific set of circumstances until you’re in those circumstances, reacting.

I always thought that if I was diagnosed with cancer I would freak out, lose my mind and go into total panic. I didn’t. I admit there were moments of panic but overall, I was focussed, practical and calm. I simply knew deep-down at an instinctive level that I wasn’t going to die.

Unfortunately, almost every person I broke the news to uttered some variant of ‘You must be terrified / freaking out!’. That’s when I would get weepy and panicked…picking up on other people’s obvious fear made me doubt my own convictions; made me wonder if they were right and I was wrong; made me think perhaps I SHOULD be panicking.

I learnt not to make assumptions about mine – or anyone else’s – likely reaction to events. I learnt to assess or ask how they were feeling about their news or diagnosis, before jumping in to comfort them for something they may not be seeing as a disaster or a tragedy.

 

ASK FOR WHAT YOU NEED

I was not very good at asking for help. It’s something I still have to focus on to this day but I am a lot better than I was and that’s partly because of my experiences when I was ill.

Now, I’m going to caveat this slightly – there are certain circumstances in which a person shouldn’t need to ask for help. If you see someone knocked over by a speeding car, do you wait for them to ask for help before you rush to their aid?

In my opinion, being diagnosed with cancer is one of those circumstances.

However, once people have rushed in to offer their help and support after your initial diagnosis, it’s then up to you to be clear about what you need and ask for help when you need it.

I didn’t do that.

I went to most of my oncology appointments alone. I went to most of my treatment sessions alone. I spent three weeks alone in a convalescence home on the South coast, rather than ask for help at home.

I felt very lonely for a lot of the time I was ill. And for a long time afterwards, I nursed my inner ‘victim’ (cunningly disguised as a strong independent woman) and unfairly seethed at how alone I had been.

Don’t do what I did.

Be clear up front about the support you hope for. Define that help. Reach out on an ongoing basis to ask for help. Accept that there will be people who cannot offer you what you need. But understand that nobody can help you if they don’t know you need it. And getting help is your responsibility. Nobody else’s.

 

 

YOU HAVE TO FIGHT

I want to make it clear that I am a big fan of the NHS. They saved my life. I am here today because of an extraordinary team of doctors, nurses and specialists who applied their considerable skills to curing me.

BUT I had to fight like hell not just to survive the illness but to get what I needed from the system. And there were too many important battles that I lost.

I won a lot of battles too. I was originally diagnosed in New York whilst travelling. I won the battle that meant I didn’t have to go right back to the beginning of the diagnostic process once I’d returned to the UK. I won the battle to get my appointments and begin my treatment within the timeframes outlined in the guidelines at the time. I won the battle to get convalescence care, to have the surgeon I wanted…and obviously I won the war overall. Here I am. Still alive.

But I had to fight. Hard. And it shouldn’t be that way. Throughout my journey I was horrified at how much hard work it was just to get through the bureaucracy. I wondered time and again about those people who didn’t have my resources and how they coped.

I’m glad a great deal has changed since my diagnosis, thanks to the amazing work of organisations like Macmillan. But still…at a time when your sole focus should be on fighting for your life, fighting the system and the bureaucracy that surrounds it is a cruel additional burden.

 

IT ISN’T OVER

Cancer is an eye-opener. A sharpener. It does make you see your life differently. All of that is true. But survivors often have to wade through a lot of anger, grief and trauma to get to that point. And for a lot of that time they are scared and isolated: constantly worrying that the cancer will come back and berating themselves:

“Why aren’t I OK? I survived. Everyone expects me to be happy. Why aren’t I throwing myself into life and singing my joy from the hilltops like a nun in a musical every goddamned day?”

I battled with depression for years after cancer.

It took a very long time before I would admit that to anyone other than my Doctor.

I had gone through an abusive marriage, a difficult divorce followed swiftly by a cancer diagnosis. I felt as though I had put my friends and family through enough.

People wanted and expected me to be over the moon – I had come through the other side, I was cured, I was a survivor. I couldn’t tell anyone that secretly I was depressed. That I was raging with anger. And wrestling with a heart-breaking grief at the loss of my chance to have children.

I’d always worked hard but now I threw myself into my career – working 16 hour days, seven days a week. I tried constantly to forget, to push away how I felt, to numb it, ignore it, suppress it. I could hardly bear to be around babies and children at a time when parenthood was beckoning almost everyone I knew. I gradually withdrew from most of my friends. I couldn’t explain how I was feeling and my capacity to pretend that I was OK was not enough to get me through work and a social life. I chose work. It was easier.

I was diagnosed with cancer 17 years ago. It took over a decade for me to stop fighting, to stop insisting that I was fine – even to myself – and to get the help I needed to deal with the aftermath. I am still coming to terms with it. Still processing it. To this day.

Recovery from cancer isn’t always a moment of Damascene conversion. You don’t wake up the day after your treatment finishes and think ‘Yippeeeeee life is wonderful, I’m going to go and climb a mountain.’

The lie of ‘I’m fine’ – is invidious and deeply damaging. It nearly cost me everything. Don’t allow yourself to fall into that trap. And don’t expect it of others.

 

WHAT’S THE WORST THAT CAN HAPPEN?

I imagine you’re waiting for the ‘Life is too short…make the most of every moment’ lesson right? And I have one of those. Life is short. And when I am faced with an opportunity now, something I want to do but which scares me, I try and remember to ask myself: “What is the worst that can happen?” because unless the answer is ‘You could end up with a life-threatening illness’ (I’d rather not do that again thanks) then I already know I can cope with whatever the answer is. With the support of my friends. When I ask for it.

 

Before I sign off: at the time of writing it is cervical cancer prevention week. So, please, if you’re a woman reading this and you’ve ignored that letter from the GP telling you it’s time for a smear test, go immediately to the phone, call your doctor and make an appointment. I know it’s uncomfortable and maybe it’s inconvenient but trust me, it’s not as uncomfortable or as inconvenient as cancer.

If you’re a man reading this, prompt the women in your life to do the same. Send them this blog if you’d rather avoid any embarrassment around asking them about their smear test appointments!

And if you have recently been diagnosed with cancer, are currently going through cancer treatment or are battling with the aftermath of survival, I am sending you my love and healing and I am here. Ask for my help and if I can help, I will.

 

Let’s ACTUALLY make a difference!

 

Sara Price

Founder, Actually

January 2020