Cancer and sexuality?
The missing piece in the holistic care jigsaw?

Sue Lennon.  Nurse, therapist, educator, coach.

Having worked clinically as a cancer nurse specialist for 20-odd years, I have been long aware of the difficulties ‘health care’ has when trying to find a way to discuss the sexual impact of cancer and cancer treatment with its clients.  Equally, I have nurtured a curiosity about the hesitation our clients feel to bring these lasting side effects to the consulting room.  This has been the focus of my last 10 years in clinical practice and my curiosity has sent me down many interesting paths.  This began with psychosexual therapy training and service provision, which lead to lots of fascinating conversations, to masses of very impressive journal papers (written by folks much smarter than me) and ultimately to a world of education – trying in some small way to make a positive difference.  I think it was Dorothy Parker who said that ‘the cure for boredom is curiosity’ – she’s right – it’s a long time since I was bored!

Apart from developing and running a sex therapy service for cancer rehabilitation at my local hospital where I also worked as a cancer nurse specialist, I have run workshops for many and varied organisations, including cancer networks, hospices and spinal units, working with staff who acknowledge that they find it difficult to open conversations with patients about sexual identity,  relationships and practices as well as worries about what (cancer) treatment might mean to this individual and their sense of self and sexual expression.  Staff also often have many concerns about ‘knowing what to do’ with the answers they receive, confidentiality and documentation as well as  who and how to refer on.  Another concern is how to challenge the impact of the environment in which a person is being cared for, the conflict between offering sensitive individualised patient care and lack of ability to provide reliable privacy…this may be in the hospital or hospice environment, or potentially in the home – particularly if a person has high level needs or is dying, and health and social care professionals are coming and going all day long.

Sexuality at the end of life is another worry, which often comes with the tag line ‘but it’s probably the last thing on their minds’. Well, what about the patient or partner who wants to say goodbye ‘properly’..as one man explained to me:  The last time he made love to his partner had not been ‘really connected sex, it was sort of functional’ he said, ‘a bit selfish maybe’ – and he didn’t want her to remember that sex as their last, after he’d died.  This man was desperate to go home from the hospital for a time, so that he could confidently arrange his medication and nurse visits to have predictable time for lovemaking. He wanted to have his catheter removed for a couple of hours, to reduce his pain medications so that he would be truly ‘present’, accepting a higher pain score as a ‘pay off’.  He wanted to feel the weight of his wife on the mattress beside him and feel her skin on his.  None of that was impossible.  He thought it unlikely he’d have penetrative intercourse, but that was ok- ‘lovemaking doesn’t have to be that’ he said.  His wife agreed and we talked it all through and made plans.  What a privileged conversation to have and how satisfying to be able to play a part in facilitating discharge.

I remember once delivering a workshop at a hospice.  The matron was very proud of the magnificent bathroom with an all singing, all dancing enormous bubbly bath- super accessible it was too.  ‘Wow’, I exclaimed, ‘and do you ask if the partner wants to get in too?  Wouldn’t it be a lovely way to embrace, to experience some sort of sexual contact and intimacy?’  The matron took three steps back and only stopped because she came up against the wall.  Once she’d gathered herself (and her thoughts), she admitted that she’d not ever thought of that and was curious.  ‘How would we begin to ask those questions?  What if one or the other didn’t want to?  What about infection control issues?’ And so we began to seek solutions….it was a wonderful exchange.

We say we embrace diversity in health care…black or white, gay or straight, able or disabled, no matter culture or class, education or religion – but is it true?  Do we really offer the same opportunity to everyone when it comes to discussing sex?  Research suggests that the more ‘different’ health professionals are from the person they are looking after, the less likely they are to have a conversation about sex…so the answer is probably no, it is not yet universal.  Staff often admit that they know this, they experience a sense of awkwardness on the subject, feel ill equipped and are often really concerned about ‘getting it wrong’,  or feel ignorant, or feel embarrassed, or rude by asking for clarification.  They say this encourages a position of assumption-that a disability renders someone non-sexual, or a life threatening illness means that a patient isn’t thinking about sex, or that everyone is heterosexual, until the patient puts them right.  Sadly this means that the staff member sometimes really does get it wrong, displays their ignorance and appears rude, which can lead to very unhappy patients and less-than-perfect outcomes.

What is really sad is that the majority of patients are happy to talk about ‘it’ (or at least would not be offended if asked).  They do however want the health professional to open the conversation.

I won’t go into the psychosexual therapy rehab work, goal setting, education and coaching for couples, as I am sure it is documented elsewhere – but I would encourage every health professional to find out where their local sex therapists are and how to refer someone.  This definitely helps you to ask the questions, if you know there is someone out there to help your patient.

My contact with SHADA came about because there are so many similarities within the ‘cancer’ world and the world of disability.  I have been massively privileged and grateful to be a friend of SHADA and it has helped to be connected to others who acknowledge the problems, share their knowledge and expertise, and collaborate.

Without curiosity, collaboration and communication, the jigsaw of holistic care would certainly be missing a piece.  My hope is that together, if we strive hard enough, we will find that elusive little blighter hiding under the sofa – and complete the picture of sexual satisfaction for those who want it.

I no longer work within the NHS but am freelancing, delivering workshops for staff and writing patient education on sex and the impact of illness and injury.  Feel free to get in touch if you want a collaborator, a workshop or a friendly ear.  It can be tough ‘doing sex’ in health care!

soozielen@gmail.com