When Sex is Silent - Living with Cancer

Sex and Cancer, you don’t usually associate the two in the same sentence, let alone in conversations. Conversations that we never seem to have…

My cancer, Neuroendocrine Cancer, was diagnosed at stage 4 in July 2017 following 8 years of discomfort, strange symptoms and acute pain which resulted in multiple visits to the GP and A&E. So when the diagnosis finally arrived there was a sense of relief that it was not psychological and perhaps something could be done to alleviate my pain. It wasn’t too long before I was sat in a consultation with a specialist strategizing my treatment and surgery.

The Subject of Sex

Surgery… Whilst it sounded very positive as I was keen to remove the cancer, the implications of what was to follow was an unwelcome experience. I must have sat in numerous consultations across hospitals and the GP surgery but the subject of sex was never mentioned. The subject of how I would feel/look post-surgery was not discussed apart from the length and shape of the scar-to-be! I was informed that it would in no way look as ‘pretty’ as my hysterectomy scar…

In all fairness sex was the furthest subject from my mind at the time but in hindsight, it perhaps should have been a subject which formed part of my recovery to be addressed at a later date. Nevertheless, it was imperative to prepare me mentally for the surgical trauma. None of the literature I received mentioned sex, it was almost as if people with cancer did not have sex or enjoy sexual pleasure! Yes sex was important but as you navigated the journey the most important issue was to stay alive for as long as possible. The problem with not having sex on the Multi Disciplinary Team (MDT) agenda is that it will never be ‘revisited’ as it was not ‘visited’ in the first instance. Your sex life would only become a ‘thing’ when you decided to engage. Then bang! Literally bang! The fear that would erupt was like nothing you ever felt. Suddenly your body confidence would be torn to shreds. Torn to shreds without knowing where to turn.

Body Image

Considering I had invasive surgery which left a scar that was long and not particularly nice to look at, you might think that someone would have considered how my body confidence might alter. Since then I found it difficult to wear a bra as they catch on the scar tissue. Wearing bikinis is no longer an option. Instead this fundamental part of being a person with a sexual existence was met with ‘silence’.

Was it me? Was it embarrassing for the medical teams to raise or was it just not a ‘thing’ that would ever be addressed in cancer consultations? Perhaps it was because I was single at the time? What about the scar, wouldn’t this present me with emotional issues? Is it because my cancer was not in the breast why lingerie to suit was not discussed? Maybe it was just overlooked? Maybe there was an assumption that sex would not be part of my life as I often went to appointments on my own. Maybe I just needed to take my head out of the sex cloud and focus on saving my life, prioritise what mattered most to the MDT.

It’s in the Literature so why doesn’t anyone talk about Sex?

Please note that I really appreciate my MDT team so this is not a criticism of their care. The more I thought about the ‘silence’ on sex is the more I researched the topic. I ventured into multiple Macmillan Support centres and found information guides on sex and cancer so what was the problem? Why the silence? The booklets were there, present on the shelves but yet, somehow, the subject did not translate into the consultation rooms. Was it that I needed to have a sexual difficulty and was expected to raise the matter of sex for myself? Did the responsibility lay solely with me? If it did, then I had far too much to deal with at the time as well as challenging this silence on sex.

As the months passed by I found myself looking at the scar and mourning the body I once had. I mourned the smoothness of my abdomen from side to side, top to bottom. Now in its place sat an unsightly raised scar which reminded me every day of my journey with cancer. Although it played on my mind when I was naked, it was not detrimental as I did not have a partner. Had a partner been in my life I felt that this would have erected a whole range of issues around body and sexual confidence. Yet still, I continued to think about how the silence made me feel, it wasn’t good and there were far too many ‘maybes’ in response to my concerns…

Fast forward to the summer of 2018, I had undergone major surgery and continued on my treatment path. I was happy. The medical team had given me another shot at life and I was grateful. I was grateful but not content. I was not content because the fundamental basics of enjoying sex and the pleasure it brings was absent from my existence. It was absent because it had never been visited, it was not afforded the opportunity to be revisited…The summer of 2018 became the turning point where my journey ventured into seeking answers, challenging the silence and openly inviting the ‘elephant in the room’ to become the norm.

A New Relationship

This was the beginning of sex and cancer for me. So, I met and fell for a really dapper man who had an advanced stage of cancer. The summer of 2018 was filled with much excitement, new experiences and oodles of laughter. I laughed so much that summer I often thought that my abdominal scar would reopen!! What was refreshing is that I did not feel the need to explain my scar. I had no issue whatsoever with body confidence as they knew what I had gone through, their journey was similar to mine. This does not mean that someone is automatically compatible or that they will have an equal understanding, but fortunately they did. I was not afraid, confident and at times forgetting that I even had cancer. The beauty of the newly found friendship helped to forge these feelings.

He once told me that a good friend came to visit him when he was first diagnosed. One of the first questions his friend asked was, ‘so how is your sex life?!’ Whilst we fell about laughing I quickly replied, ‘so how is your sex life? Your friend was right to ask you!’ This was quickly followed by a deep conversation where it became apparent that apart from his friend, not one medic had asked either of us this question! Was it because we both had advanced cancers? Was it deemed as being pointless? Whatever the reason was it was not good enough!

From here I made a decision to make it my concern. Fast forward to the autumn of 2019 where I made a connection with others who had shared similar stories of sex not being addressed as part of the recovery. The stories were heart wrenching, were we not human beings with basic needs? Some were given such poor advice that it later became detrimental to their wellbeing. This was not right! I felt that all patients should be offered the opportunity to have sexual intimacy as part of their cancer care plan. If they chose to discuss it, this would remain optional but it should be an area which was deserving of timely attention.

Why isn’t Sex discussed?

Going through cancer you are supported back into employment, given lifesaving treatment/surgery and encouraged to move forward into your ‘new normal.’ ‘New normal’, what is this if sex and intimacy is not part of it? Does finding a ‘new normal’ mean to eliminate parts of your former sexual wellbeing? Is this the ultimate sacrifice of being helped to stay alive? For me this was no trade off, cancer patients deserved to experience sex in their ‘new normal’.

In my Wordpress blog, ‘Cancer is a Dancing Queen’, I introduced the topic of sex and cancer. I discussed ways of increasing body confidence by dressing up (roleplay), disguising scars with lingerie and introducing playfulness as part of sexual fulfilment. The response to this post was great! People actually wanted to talk about sex and cancer. Prior to this I ran a survey asking questions about matters I felt was missing from cancer support. Sex was one of the topics.

Patients want to talk about Sex

To my unenviable surprise, not one person had sex mentioned during any of their consultations…Considering the health benefits of sex on the mind, the body and our soul, you would think that this natural act of pleasure would form part of cancer recovery. Don’t get me wrong, I can appreciate that sex is not always practical or desired depending on each individual circumstance. However, what I am saying and will continue to say is that sex must form part of cancer care plans. Sex must no longer be the ‘elephant in the room’ both in consultations or within relationships.

Cancer or not, we have basic needs and a human right to this form of pleasure. Sex is enjoyable, healthy and can form an integral part of your existence. Post treatment/surgery you should be afforded the opportunity to renew your body holistically, which should include sex if it is desired.

As I write this article, this month is Breast Cancer Awareness month (October). There have been hundreds of social media posts filling timelines with words of encourement and personal journeys. To my horror I came across one of my followers who was being warned by the social media platform that their posts on Breast Cancer which included photography, would be removed and their account deleted! Yes DELETED! Lightbulb moment! Now I truly understood why sex and cancer never made it to the MDT tea party! If a large social media platform could see Breast Cancer posts as being ‘sexual’ in content, how did the Breast Cancer surgeon view breasts? How did the Oncology Clinical Nurse Specialist (CNS) view breasts? How did the GP view breasts? If breasts did not form part of our sexual pleasure, whatever our gender why would they see sex as an urgent conversation in cancer patients? Why would anyone try to fix the ‘elephant in the room’ during consultations?

Let’s Talk about Sex

So what would I suggest when it comes to sex post cancer surgery/treatment? Be open to learn, be ready to communicate, be present in the moment, be ready to express yourself possibly in a way that you have never done before. Body confidence does not always come naturally, cancer or not, so have a think about dressing up in role play outfits. By doing this, it may help you to be your true self behind a semi disguise. It may also help you to renew your sense of confidence in your sexual relationship.

Have you considered introducing some kink or watching pornography (not the type with the unbelievable storyline and music stuck in the 70s!) Why not try sex toys? If you do decide to travel along this route make sure that you use reputable sites such as Jo Divine. Whilst you want to enjoy sex, the last thing you need is a reaction to lubricants and sex toys which encourage allergic reactions, Bacterial Vaginosis or Thrush! Do your research! Through careful reviews I found an excellent range of lubricants such as Yes Organics. I was also lucky enough to come across the Mini Marvels Marvellous Lover clitoral vibrator!

Some of us have had surgery or treatment which can change how you feel about yourself, emotionally and/or physically. Again, introducing sex toys to assist may prove to be useful along with informative literature on sexual health. All is accessible on well informed websites. Do remember that sexual pleasure does not need to involve penetration. Read around the subject on different ways to bring pleasurable orgasmic experiences into your sex life. When you are fatigued or post-surgery/treatment the last thing you need is a marathon sex stint! Find ways to explore short bursts of pleasure such as mutual masturbation.

There are also lots of battery operated finger masturbators which stops your fingers from becoming tired – let the battery do the work! Mutual masturbation can take place anywhere (don’t get me into trouble by getting caught in a car on a layby!) and does not need to wait until bedtime or the bedroom – be present and be part of your renewed post cancer sexual adventure!

Four years post diagnosis I am still waiting for sex to form part of my consultations/support and hopefully to become a ‘recycled virgin’ in the process!! Please do not suffer in silence, silence that you did not ask for. Let’s speak out and push for sex to form part of cancer recovery for EVERYONE!

BIO

My name is Cheryl aka ‘Cancer is a Dancing Queen’ on Wordpress and Instagram. I am the proud mother of two grown up children.

I was diagnosed with stage 4 Neuroendocrine Cancer in 2017 following a cycle of repeat symptoms over 8 years. It first started with the diagnosis of a benign tumor and the rest is history. Being catapulted into the world of cancer has opened my eyes to the gaps in the support of people living with cancer. The bits in between that with the best will in the world, an Oncology surgeon simply cannot fix!

I am looking forward to raising important questions around sex and cancer in the community, within charitable settings and in parliament if needed! Sex is a fundamental part of life and should be present in all Cancer Care plans.

Please help me to take up this cause by sharing your stories and putting sex on the cancer map!

Thank you!

A huge thank you to Cheryl Johnson for writing this fantastic article about her experience. Having connected through social media, (the positive side of social media), chatting at length about sex and cancer and why it isn’t included as a compulsory part of treatment, she is opening the conversation about sex and cancer through her own experience, talking to other people post treament and to healthcare professionals (HCPs) too. The experiences of expert patients is so important, something all HCPs working in oncology needs to hear, this is their “lived” life, the impact of treatment upon their quality of life which includes enjoying sex. No one should ever have to feel grateful for “just being alive”!

Using my nursing experience and extensive knowledge of our sex toys and other products we help many people post cancer treatment to regain their sexual function and enjoy pleasurable sex in whatever they can and are able to and work with several amazing cancer charities and support groups including Trekstock, Womb Cancer Support, Ovacome, Vulval Cancer Awareness and Chris’ Cancer Community.

However it is incredibly frustrating that talking about sex and the impact cancer treament has upon your sexual function, intimacy, pleasure, body image and confidence is not a compulsory part of treatment and not even an after thought unless you are lucky to have a HCP or CNS ( like the amazing HCPs we work with who also give out our health brochure and signpost their patients to Jo Divine) who is proactive in helping you continue to enjoy sex. It is not rocket science, often simple practical advice and suitable products that can make such a huge difference to sexual health, intimacy and pleasure.

So let’s get this conversation going, keep talking, ask your HCP why they do not talk about sex and ask them about sex. Enjoying pleasurable sex is important to so many people and having cancer doesn’t mean you have to give up on your sex life.

Cheryl has also created the fabulous Cancer Creativity in 2020 for UK residents, a amazing 8 week course, covering so many different topics and connecting people who have had/ have cancer and have gone through or are going through treatment. The first course, now coming to an end has been a huge success and she hopes to repeat it again this year.

Useful websites

Neuroendocrinecancer UK : www.neuroendocrinecancer.org.uk
Womb Cancer Support: www.wombcancersupportuk.weebly.com
Eve Appeal: www.eveappeal.org.uk
Ovacome : www.ovacome.org.uk
Jo’s Trust : www.jostrust.org.uk
Vulval Cancer Awareness UK : www.lsvcukawareness.weebly.com
Breast Cancer Care :www.breastcancercare.org.uk
Chris’ Cancer Community : www.chris-cancercommunity.com
Dr Louise Newson, menopause specialist : www.menopausedoctor.co.uk
Jennifer Young : www.beautydespitecancer.co.uk
HipHeadWear : www.hipheadwear.co.uk
Pelvic, Obstetric and Gynaecology Physiotherapy :www.pogp.csp.org.uk
Ovarian Cancer Action : www.ovarian.org.uk
Shine Cancer: www.shinecancersupport.org
Clic Sargeant: www.clicsargent.org.uk
Trekstock: www.trekstock.com
Macmillan: www.macmillan.org.uk
GRACE (Gynae-Oncology Clinical Research and Excellence): www.grace-charity.org.uk
College of Sex and Relationship Therapists : www.cosrt.org.uk
Beating Bowel Cancer : www.beatingbowelcancer.org
Prostate UK : prostatecanceruk.org
Testicular Cancer : orchid-cancer.org.uk
Mouthcare for cancer patients : www.mouthcareforcancerpatients.co.uk