Navigating sex and cancer is a minefield. Whether you’re trying to do the deed after diagnosis, you’re living with cancer or you’re in the realms of that elusive new normal we hear so much about, the truth is, the whole thing can be, well...tricky.

After your body has betrayed you in such a dramatic way, it can be difficult to let go enough to enjoy yourself with something so physical. And we’re not talking about it as much as we should be. That’s why we enlisted our pal Lauren Mahon - to throw back the covers for our Lifting the Lid on Sex and Cancer.

There’s no doubt that cancer changes everything and your sex life is no exception. But when you’re in your 20s or 30s, sex shouldn’t be taken off the table, even when a life-threatening illness is thrown into the mix. The reality is that once the cancer bomb has been dropped, most people aren’t getting the support they need to make sure they’re still able to have the active sex life they want, need and deserve. 97% of our community said that their oncology teams didn't discuss how cancer would impact them emotionally when it came to sex. 93% said oncology teams didn't discuss how cancer would impact them physically when it came to sex, and over half of the community said that the information they got from their oncology teams when it came to sex and cancer wasn't very helpful at all. But sex is a huge part of anyone's life - and let's face it, when you’re living with or beyond a cancer diagnosis, you need as much fun as you can get.

THESE THINGS TAKE TIME

So what can we do about it? For Brian Lobel, one of the founders of Sex with Cancer, who was diagnosed with testicular cancer, it was about giving himself time to find his way back to himself while also recognising the two sides to his experience as a cancer patient and within his sexual experience. 

He explained: “Cancer was about grieving a body that was changing and trying to think about that, and because I was in this major life moment around sex and sexuality, think about how do I emerge from this? What is this new thing and how do I make it sexy and confident and whole and quiet and grieving and fun and messy and delicious?”

But Brian stressed that time is crucial. As cancer patients, we often give ourselves grief that things must go back to ‘normal’ IMMEDIATELY when, not only is that not realistic, in many cases it’s not possible. When it comes to sex and cancer, Brian recommended “having the confidence to allow your body parts to settle” and added: “you have to give it time to settle before you kind of get out there but I think people are like “I need that erection now, I need that orgasm now, I need to be happier now, I need to look in a mirror and be satisfied now”. But that's a long process. 

It’s completely natural to feel removed from your body during and after cancer treatment, and as a result intimacy can take a hit. Patients often disconnect from their bodies as a way to deal with all the medicalisation of hands on themselves and then enjoying other people touching you after this can be difficult to transition back to. 

TAKE THE PRESSURE OFF

Psychotherapist Kate Moyle explains: “In order to get through our body feeling medicalised hands on us all the time, we disconnect because it is a way of separating and getting through. All we have to prioritise at that time is getting through. So when we have lots of hands on us in a medicalised not sexualized not sensualised way, then when i have new people's hands sometimes inside me I need to separate in order to be able to manage and cope with all of these feelings and then sex essentially is the opposite of that.” The whole process takes some getting used to - but masturbation can be a great tool to help you along the way.

Not only can masturbation be great for helping you reconnect with your body and de-medicalise the feeling of hands on your body but it has tonnes of other benefits too. Sam Evans, founder of Jo Divine told us that it can improve your sleep, boost your immunity, improve your mood, alleviate pain and help you figure out what you like and find your way back to feeling like a sexual being, rather than a patient again.

And when it comes to orgasm? Take the pressure off. Sam stressed that the last thing you need is to give yourself a hard time about whether or not you’re hitting the big O or not: “Make sure that you are gentle and compassionate with yourself and don't expect a very quick fix. This is a process. You're looking at all different phases of treatments, all different lines of treatments, all different side effects - so to think that you're going to just hop back in doesn’t make sense. I think take that pressure off yourself because it's just not going to do you any favours.”

But intimacy is something many of us do crave - we’re humans after all. When we’re ready for it, what’s the best way to approach it? Kate has a few tips

1. Accept where you are rather than focusing on where you were before. Thinking about that gap is a constant middle finger to your mental health
2. Remember that change isn’t always permanent
3. Get to know your body, almost as if you’re starting again
4. Accept and grieve that things are different. But know that’s OK.

WE DON'T WANT ANOTHER PROBLEM

So why aren’t patients talking to their teams about their concerns around sex and cancer? Arguably, those who operate on us and order our chemotherapy and walk with us along our treatment paths know us as well as anyone. Why can’t we talk about something as base as our sexual needs and desires?

Brian says: “I think the reason why people don't ask questions to their doctors or to their nurses is that they don't want to say I’m sad or I'm dissatisfied is because we don't want to have another problem - we’ve been through enough”.

As a society and culture, it’s much more common to be uncomfortable talking about sex than it is to be comfortable talking about sex, then when there’s illness to consider too, it makes sense patients will find it even more difficult. 

YOU CAN STILL WANT TO HAVE REALLY GREAT SEX

Kate agrees with Brian that people often feel they don’t want to “create” another problem for their doctors, explaining: “I've heard lots of people say “I spoke to my doctor about everything - I felt I had so much of their time, they saved my life but sex in comparison to everything else that we've done together feels like a small thing. That feels not life-saving, that doesn't feel as important as me having my health, as me surviving as me getting through this and then I shouldn't be taking any more of my doctor's time because they should be helping the next me”.”

But as Lauren counters: “Your life has been saved but you can still want to have really great sex” and as patients, we can ask our medical teams for help and support. Your team likely won’t ask you about your sexual wellbeing unless they know you want to talk about it, which unfortunately means the onus is on you to bring it up. But that doesn’t mean they won’t talk to you about it. Even if you feel embarrassed, you should still ask for information and support if something’s bothering you.

Think about who you might want to speak to - if there’s someone on your team you feel more comfortable with, you might start there. Think about the questions you want to be answered in advance. If you’re having a specific problem, it can be useful to think about what you’re hoping to get out of the conversation with your team. If you identify as LGBT+, there may be times when it’s useful for your team to know how you identify your gender or sexual orientation so they can support you as well as possible. If you’re trans, these conversations can be especially difficult if the information you need involves parts of your body that do not reflect your gender identity. If you do not feel you can talk to your healthcare team, you could talk to your local sexual health service, a transgender sexual health service or the LGBT Foundation.

THERE'S NO RIGHT OR WRONG WAY

However you feel about sex, it’s important to remember that it’s not simply about what you're doing, but how you feel. Reconnecting with yourself and finding your confidence is key. However you need to do that, know that it can take time and remember, there’s no right or wrong way to do sex, or indeed life, with or after cancer.

Want more info? Watch our Lifting the Lid on Sex and Cancer, hosted by You, Me and the Big C's Lauren Mahon with Brian Lobel, Kate Moyle and Sam Evans now.