Guest blog: 'Lube is not shameful; lube is your friend'- Life after breast cancer diagnosis by Hannah Cosham
Hannah Cosham writes an honest account on life after a breast cancer diagnosis, volunteering as a Boobette and discovering YES...
Breast cancer is one of the most commonly diagnosed cancers in the UK. 1 in 8 women will now experience breast cancer at some point in their lifetime. As such, it is arguably one of the most well-supported, well-funded, well-publicised forms of cancer out there; I mean, it even gets the whole month of October to raise awareness!
In a swathe of unsubtle pink ribbons, balloons and boas, you wouldn’t think much would go under the radar with regards to breast cancer. However, its biggest secrets are not hiding in our bras, but in our underpants. In 2015, I was diagnosed with primary er+ breast cancer, aged 30. I caught it really early, so was as lucky as someone can possibly be, being diagnosed with cancer at 30.
I had surgery to remove just the lump and some lymph nodes, kept my breast, avoided chemo, and finished hospital treatment after completing 4 weeks of radiotherapy. However, I was planned to continue on an endocrine drug called Tamoxifen for 10 years, to reduce the risk of my cancer returning.
Different cancers have different mechanisms that fuel their growth. Being “er+”, my cancer responded to oestrogen.Tamoxifen doesn’t stop your body from producing oestrogen, but it prevents your body from processing it by blocking the receptors. As such, you can experience a wide range of menopausal and hormone related symptoms. There’s no warm-up. No gentle introduction. BOOM. At 30, you feel like a menopausal woman with all the trimmings!
The side effects of an early menopause
The common effects of menopause are pretty widely spoken about: the hot flushes, the joint pain, the fuzzy head, the hormonal rages. Indeed, all of these were switched on overnight for me, and these were difficult enough to accept as an active 30-something. On an absolute dream holiday to New Zealand, having the best time of my life, I distinctly remember one evening where I was overwhelmingly burning up from my very core to my flushed cheeks and I COULD NOT cool down. At that moment a lady of a “certain age” quipped something like, “Oh! That should be MY problem! Phnarf phnarf phnarf!!” And, in one flippant comment, she destroyed me. I felt like I wasn’t allowed my condition. That perfect evening is forever tainted.
However, that was just the tip of the iceberg. I needed to pee. ALL the time. Awkward, when you want to go hiking all day. Awkward, when you want to travel long-distance. Awkward, when you want to return to full-time employment after being on long-term sick-leave. Worse- it’s embarrassing, distressing, and hugely uncomfortable when you need to race home before you pee yourself in public, or you don’t even get as far as being able to leave the house because the only sanctuary was on a loo seat.
I missed days at work. I lost days of holiday. It’s humiliating and strips you of all dignity, feeling like that kid that needs to take a spare pair to playgroup at the physical prime of 30. Having never been a skirt-wearer previously, I can now only wear trousers with the most elasticated waistbands, for fear of adding extra pressure to my fretting bladder. My entire wardrobe adapted to my new bathroom habits.
Vaginal dryness is dismissively listed as a side-effect of Tamoxifen. When the other option is possible cancer, vaginal dryness seems like the least of your worries. But it’s these intimate changes that have the most insidious ways of messing up so many aspects of our everyday life: confidence, relationships, planning your day... The full impact is often unspoken, and as such, our struggles are not just embarrassing, but desperately lonely. It was only at a Breast Cancer Care “Moving Forward” course that I heard talk of the pee sensation being linked to Tamoxifen. Another lady spoke of repeatedly visiting her GP with a suspected UTI, only to be told that there was no infection. At last, I could relate! It was at this point that my wonderful breast care nurse started me on the path to salvation: Vaginal moisturisers. I hadn’t even dreamed of such a thing! Sure enough: my face, my legs, my irradiated boob- these would all be slathered in moisturiser daily. But my lady bits?! My breast care nurse bundled me some samples, and my experimentation began.
I tried a few different brands of vaginal moisturiser with hilarious, albeit distressing results! Some brands separated into what I can only describe as ‘curds and whey’, meaning that a while after application I would experience a vaginal flush followed by pellets of cheese. Needless to say, with ‘down there’ becoming such a minefield (with the risk of pee and now vagina cheese), sex became a game of Russian roulette. This was compounded by the fact that, when commencing Tamoxifen, I had to cease taking my beautiful, wonderful mini-pill. Systematic hormonal contraception was now out-of-the-question. Ten years, I’d been on that pill. Ten glorious years of suppressing my natural period and feeling in control of my body. I’d taken that decade for granted. Upon making the switch, I not only gained a ‘menopause’, but also my teenage period returned.
Caught in the midst of the hormonal chaos of both worlds, I had everything, and I wanted none of it: the pain, the mood swings, and the absolute bloody murder overflowing from my pants. I didn’t feel sexy, and I felt like I was losing the most intimate moments with my husband- my loving (and totally fit!) partner of ten years. Ventures towards sex were uncomfortable and usually ended in tears, which didn’t inspire confidence for the next attempt. The guilt would kick in- he didn’t sign up for this. I’m not the woman he married.
An introduction to YES
Apart from barrier contraception, my only other possible option was a Mirena coil, as the progesterone it releases is in situ, rather than throughout the body. It was also suggested by my oncologist that this progesterone would stimulate natural lubricant production where it was needed, hopefully easing my side-effects. With little choice, I booked in to have one fitted.
The doctor at the sexual health clinic was brilliant- the kind of person you can just chat away to whilst she’s fishing around downstairs. Hearing my medical history, and my reasons for having the coil fitted, she took great care and interest in me. “Have you tried YES?” she asked. “YES? As in, yes/no?” “YES. As in, yes yes oh god yes!” I’d been through about five brands of vaginal moisturiser, keeping the packaging of each one with my written review of it. I’d not come across this one. I went home, looked online, and figured I’d give it a go, ordering a small batch of VM. When my parcel arrived, I tried it out straight away.
I was halfway through a pack of my previous product, but I never finished that pack. I can genuinely say that having switched to YES, I haven’t used another product since. YES feels like me. Cheesegate has become a thing of the past!
Lube is not shameful; lube is your friend.
After 16 months on Tamoxifen, I made my own decision to stop taking it. The severity of the joint pain it induced was reducing my quality of life to an extent that I could no longer tolerate or justify. This does increase the risk of my cancer returning, but I have taken ownership of my decision and its possible consequences in order to live my best years well. I will always be adjusting to my “new normal” after cancer, but now I am in control. The unbearable pain that resulted in me eventually walking with a stick has now lifted, to the point that I was able to hike through the Transylvanian Carpathians this summer in aid of the breast cancer education charity CoppaFeel!, for which I volunteer as a Boobette. I climbed the tallest mountain I have ever scaled, literally and figuratively! However, Tamoxifen has left a lasting legacy- the gift that keeps on giving.
I still actively need to care for my intimate membranes as part of my regular routine: water-based for daily maintenance and oil-based for sexy times. I still get the pee sensation every now and again, especially just before periods and when I’m feeling high-anxiety anyway. The difference now is that I am equipped with a tool. There is something I can do about it. I have an element of control to relieve my suffering. Psychologically, that is a colossal, empowering step in regaining a sense of normality in life, post-cancer. And with regards to my closest relationship, after everything life has thrown at us, my husband and I are now able to share, enjoy and have fun with our most personal moments together. I am comfortable and confident in my skin. All from a humble lubricant? YES! It took me a lot of lonely, uncomfortable, embarrassing and distressing experimentation to get to where I am now.
Lube is not shameful; lube is your friend. So is sharing our real knowledge of breast cancer, not just flashing the pink propaganda. By talking openly and honestly about our experiences, we won’t allow cancer to keep secrets from us anymore. And if anyone starts squirming, at least it won't be because they desperately need to pee.
Blog post written by Hannah Cosham, author of The Boob Adventures of SuperHan. You can read her blog here.