Getting Physical After Cancer

In the work I do I feel I have discussed so many subjects related to cancer, but after a conversation with Sam I realised I hadn’t really talked too much about our physical relationships. Many might say, that is the least thing to worry about, but for a lot of us they are so important. Of course cancer doesn’t only affect us but our partners too, and things can change dramatically after treatment. What is also crucial here is that cancer affects all ages, and there are so many young people dealing with these issues as I write. I can’t begin to imagine starting my time of ‘sexual exploration’ having had serious treatment and trying to deal with the physical and emotional issues of that. On reflection in all my 8 years of treatment, the impact on my physical relationship has never been discussed. As things are moving dramatically these days, there are many new ways of working and I am finding it increasingly important to innovate, but if I am honest there seems to be a resistance to change from service providers. Below Sam shares her own views and experiences.

As a sexual health and wellbeing writer and a former nurse I’m on a mission to get healthcare professionals (HCPs) talking about sex with their patients. Having a nursing background you’d think it would be easier to get people to take notice but it’s not! I have had so many negative responses and conversations with HCPs that I shouldn’t be surprised after cancer My passion for writing about practical ways in which people can overcome sex health issues arose from the numerous conversations I have had with customers about their sexual problems and the lack of advice given by their doctor and other HCPs. Initially I thought it was because we have many older customers, but I soon came to realise that HCPs don’t talk about sex.

Many healthcare professionals will tell you that they find it hard to talk about sex with their patients yet it’s often even harder for their patients to raise their problems with their doctor for fear of being dismissed or told they’ll just have to put up with it. Sex is so often medicalised by HCPs as they can’t think beyond their medical training. Those who do discuss sexual problems with their patients rarely offer practical solutions other than sex therapy, for which there is often a long wait, or prescribing medication or some medical device that is ineffective and patients won’t use.

Through exploring different pathways to sexual pleasure and intimacy there are so many ways in which people can enjoy sex, yet many HCPs fail to offer this advice and won’t recommend support groups and websites like Jo Divine. We have been told so many times by HCPs that, “ We love what you’re doing but can’t recommend you!” Yet they are not offering any advice to their patients, therefore failing to give the best care they can when they know this advice is available for free at the click of a button. HCPs are not guardians of the internet. Patients can find so much more information online but it would be good if the information they read is well written and offers correct advice and practical tips.

At the request of Consultant Urogynaecologist, Dr Alex Slack and women’s health physiotherapist, Pip Salmon, at Tunbridge Wells Hospital, we created a health brochure containing sex toys, lubricants and pelvic floor exercisers that can help with a whole range of gynaecological problems such as vaginal tightness, vaginal dryness, postoperative scarring, decreased sexual sensations and symptoms of the menopause. Both recognise the benefits of sex toys and Dr Alex Slack says he treats women so they can enjoy sex again which is such a refreshing attitude but there are very few consultants with this view.There are 14 gynaecologists at the hospital where he works, yet the health brochure is being given out by just 2 of them and Pip Salmon! sex after cancer 1

When I was invited to speak at the Survivorship Conference for gynaecology/oncology nurses, it amazed me just how many people avoided my table, which had a few slim vibrators nestled amongst the brochures. These nurses look at vaginas for a living yet are embarrassed by a bit of buzzing silicone! Some wouldn’t even buy a raffle ticket to win a sex toy. One comment was what would I do if I won and it fell out of my bag at the station! HCPs, especially doctors, always ask for the research about our products, yet very little has been done, we just have anecdotal evidence from people who have used our products and have found that they help their sexual problems, in addition to making sex better again. The impact of undergoing surgery for prostate cancer or gynaecological cancer can affect the sex lives of both partners, yet many couples do not have counselling prior to surgery or treatment.

Both partners need to be included in the discussion right from the start so that they fully understand the implications that cancer and its treatment can have upon their sexual relationship. Being made aware that there are ways in which you overcome some of these problems, if or when they arise, helps couples to deal with any problems, as well as involving them in the treatment process. It also speeds up the rate of recovery, allowing a couple to return to enjoying sexual pleasure and intimacy, in whatever way they can or want to. So HCPs, if you can’t get over your embarrassment about sex, don’t let your patients down, you have the choice of offering better advice to your patients by recommending support groups and websites, like Jo Divine, that fill in the gaps in your knowledge and save your blushes!”

I would like to thank Sam for sharing her experiences and if you would like to find out more about her work click here. You can also find her on  Twitter

Do you feel that we don’t discuss the physical side of our relationships after cancer enough? Did you feel you had adequate support around these issues?  Please feel free to share your views and experiences below.  

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  1. This is a great article. Thank you. Sometimes, our code of conduct may preclude ” recommending.” However, it does not ask us to keep people in the dark. Also, as HCPs etc we can remember that sex is not only penetrative sex, there is a whole spectrum of experience that people may – or may not be wanting to discuss. Even a tender whisper can be difficult with a dry or dribbling mouth. If we truly want to be of use to those we work with, if we can, we must try to listen – and learn – and take any discomfort to supervision!

  2. Thx so much for sharing your own experiences and opinions Leah, which are so important to this sort of discussion. Despite all our new found openness I realised that even I hadn’t really talked about this side of things in the way I should. It seems to be a subject many of us still feel awkward with. It was only after speaking to Sam about her experiences I fully understood that there is still a long way to go. I hope by sharing in this way it might prompt us all to think about how we can do things better

  3. And it is only my opinion! It’s great that you have aired this subject and I hope that makes some more change! All good wishes 🙂

  4. Thx Leah, it is so important to hear the opinions of others. I am really interested to hear throughout the week what other people think. xx

  5. Thank you for publishing this article Chris, I’ve shared it with the ladies in the womb cancer support group as well as on Facebook and Twitter. It’s a topic many want information about but may not ask if they have to run the gauntlet of the ‘you should be grateful you’ve survived cancer’ comments that can pervade public forums on this topic. Many thanks to Sam for her insights. xx

    • Thx so much for that Deb! Having had a great conversation with Sam, I realised that this was one subject I hadn’t really dealt with in this way. When Sam volunteered to share her experiences the timing was ideal. It is a subject that most of us naturally avoid and tend to stumble along as best we can after cancer treatment.
      But knowing that there are people out there that can help and nobody tells you, is even more frustrating!
      Thanks for all your help in sharing the love Deb, and great to see that your own work is getting the spotlight! xx

  6. I know from what a lot of our ladies have said that this is an issue that can have a profoud impact on relationships during and after cancer treatment, even leading to marriage breadowns. Breaking down taboo’s is never easy and we British are renowned for having a Victorian attitude to sex but if we are to move towards a more holistic approach to cancer treatment then we have to accept that this includes the sexual side of things aswell. Thank you Chris (and Sam) for talking about this issue in an open and frank way. 🙂

    • It is such a very big issue, and I was quite surprised I hadn’t really talked about it in such a way before. This is one of the most difficult to talk about I guess because it is so personal. Very difficult to pitch the piece at the ideal tone for everyone, but this has been one of the most read so far, which is great. Thx so much for the invaluable sharing too. 🙂

  7. Often an important aspect in cancer patients lives that needs to be discussed more. Great blog post!

    • Tu! I totally agree with you which is why I opened the subject up. It’s very difficult to write a piece like that which will get the message out but not offend the more sensitive readers. This post has been very busy though 🙂

    • Thx so much Marie. It is such an important subject that doesn’t really get the help that we need. It’s nice to see people engaging with the post in such a positive way. xx

  8. This is one area that has never been discussed by the medical team either before surgery or since and I’m equally responsible by not mentioning it too. Nobody tells you that your body won’t function the same sexually after gynae cancers and whilst that’s tough to deal with as an older lady, it’s even harder for younger women when they start relationships with new partners. Thanks Chris and Sam for raising this issue!

    • It was exactly the same for me Margaret. I guess at the time there were other priorities but as time has moved on, your body changes due to treatment and I’m sure if we are all honest, we could have used some professional help. I have seen many relationships break down from this very issue. Sam prompted me to stop pussy footing around and get the subject out there in this way. Thanks as always Margaret for sharing your experiences so honestly!

  9. It was so difficult to reply to the post but that only perpetuates the taboo. Whilst there is a growing awareness that breast cancer patients have problems with body image the problems faced by gynae cancer ladies aren’t addressed as openly. We often have internal scarring that
    , causes pain, hormonal changes that effect libido, a susceptibility to nasty UTI’s ,pelvic floor problems which may cause stress incontinence etc etc…..none of it sexy at all!!!

  10. I understand what you say there Margaret, I thought a few times before posting it! But I felt there would be few sites who could deal with this subject in the way we can, so thought I had too! So pleased, because this has been the busiest post of the year. Massive feedback across social media, and many shares. There is a similar issue for men too, so we all need to talk about things together. xx

  11. As a male MDS patient currently being treated for chronic GVHD I am suffering from low libido. I asked for a testosterone level check. This came back as a low 8. My surprise was that this was not a routine check nor was there a base level taken before the allogeneic stem cell transplant. I suppose I felt like it was a topic that was left for the patient to raise, relying on their confidence to raise the issue and therefore relegating it to a minor felt awkward and I sensed some embarrassment the medical team in discussing the matter. It is however now being acted upon. Thanks for this important blog entry.

  12. Hi Dave, and thanks so much for sharing your very personal experience. As you are obviously aware a low libido can happen at any stage during cancer treatment, for both sexes. There are so many reasons why of course and the level of testosterone is a common one.

    As with a lot of subjects after your treatment, it is very much left to the patient to ask the questions. I know from my own experience that it is difficult to approach the clinician each time something feels different, and you are left wondering if you are the only person feeling like that.

    It is something that is so important, but we still find it difficult to engage in the right way, which I find quite surprising considering how far the subject of sex has come in recent years. I am delighted that a conversation with Sam convinced me to open the subject up for discussion. Many thanks and wishing you well, Chris

  13. This is an important subject. One Thing I would have liked more Information on was: contraception – having oestrogen-positive breast cancer aged 30 I was immediately taken off the pill and told I would never be allowed anything containing oestrogen again, and I was told contraception was important as Tamoxifen causes birth defects… but I wasn’t really told much about what my Options were. Just an assumption I’d use condoms forever? That seems like a gap to me.

    • Hi Alex. Thanks so much for sharing your own experiences. There are many gaps around this subject, which is quite shocking in this day and age. It is so important that we understand much better the impact of our physical relationships etc on our mental health. It sometimes feels that we should just be grateful for surviving. There needs to be much more importance given to people living with long term illness.

  14. This is such a useful and relevant article. Meet so many people for whom their physical, intimate, sexual and/or sensuous lives are changed forever. The palette of pleasure can be very varied and is different for us all – and ever changing. Please don’t give up on finding pleasure in life. If your healthcare team don’t know, they (we/I) need to find out or discover someone who can help. Astounds me how much financial resource is directed at survival without provision for living.

  15. Thx so much Leah. I couldn’t have put those points any better. It is no longer good enough to just survive, we must now focus much more on helping people to really live their extended life.

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