 We all do it, time speeds by and before I knew it, in the space of two years, I was married, and had two different jobs in the same organisation, always with a feeling of something isn’t quite right ‘down there’. By down there, I am of course referring to the vulva area which is the external female genital area, not to be confused (as it often is) with the internal areas which include the vagina, cervix, uterus and ovaries. During this time I had also had a cervical smear and thought, ‘Well if something is wrong, the nurse will flag it to me’ after all they see the external area when performing this test. This didn’t happen, so I wrongly put my concerns to the back of my mind as life took hold…fast forward a couple of years to April 2020.
No one predicted what 2020 would be like, least me and at the start of the year my main focus was looking forward to 40th birthday celebrations to be held at the end of the year. I didn’t think that I would be working from home on a day-to-day basis due to Covid 19 and my work would change focus to support the response to Covid 19. Neither did I know that this would be the opportunity for me to seek some advice about my increasing concern about ‘down below’, knowing that I was exhibiting some symptoms which were a real change for me including soreness, cracking and bleeding, which I noticed particularly when I walked. I’m guessing exacerbated by continuing to squeeze into a pair of skinny jeans. So mid April, I sheepishly made an appointment with a female GP, who called me to talk through the issue and then the horror struck me…she asked; ‘have you had a look at it’, to which I replied ashamedly, ‘no’. How embarrassing I thought to myself, not to look, not to check my own body. On reflection I can put that down to a few things, being busy, being ignorant or actually just a little bit scared to face into it, maybe a bit of all of the above?! The GP of course took this in her stride, after all I’m sure I’m not the first and certainly won’t be the last…unfortunately. So the task in hand, to hold up the mirror, which included a compact mirror and almost yoga like positions to see and immediately had that sinking feeling that something is really not right. The GP had already stated that she would call me back a couple of hours later, when she did and on the basis of what I found, a raw area with white plaque that I should come on in to be ‘eyeballed’. A couple of days later I went in to the GP surgery, after a very funny conversation in which it was agreed ‘no talking, we’ve already done that, just get your kit off’ to which I responded ‘no date?’ which lightened the issue. The GP was quick to act, saying she hadn’t seen anything like it before and off she referred me on the 2-week cancer pathway. I am very grateful the GP was quick, straightforward and honest. So two weeks on, I found myself at the local hospital, which during lockdown was a very strange place to be, primarily due to knowing generally only those people on the 2-week pathway or with cancer were being seen at this point during lockdown. The consultant again quick to act and mentioned ‘it looks like it’s VIN’…thinking to myself, I had not heard of this condition before, what is VIN?!. Immediately the consultant confirmed that I would need surgery and also warned me it would be highly likely to return. He gave me the option to have the biopsies there and then (best to get it out the way I thought’ and I actually said the words ‘yep, crack on’, laughing to myself afterwards, which was a welcome distraction as the biopsy procedure ensued. I did think prior to the appointment I’d more than likely be having biopsies, but hadn’t quite realised the extent to which I would be cut and stitched up, so the challenge was on to get home prior to the local anaesthetic wearing off, which was easy enough as the roads were quiet. Although I was uncomfortable down below, I was psychologically comfortable knowing that I would hear soon what I was facing for sure. Waiting is and uncertainty is hard, no way of dressing this up, it’s HARD and you hold on to the dates as target milestones, thinking you’re getting closer to getting sorted and knowing what the crack is (sorry another pun!). I received a letter asking me to go in about a month later for a ‘photo opportunity’. This provided some amusement to me and was being done to seek advice from the specialist in another hospital. I was told during this consultation that I was VIN2&3, however there was a strong chance there are ‘pinheads’ of cancer. I rationalised this in that the biopsies are only small areas taken away, so actually until it’s removed complete and the full histology has been completed you continue to not know for sure. Hearing the word cancer made me revert to a complete introvert and as a result I left without asking all the questions I needed to. Come July and I had been transferred from the local trust over to the nearest University Hospital. By now, I’m used to ‘the dreaded examination’ and now under the care of one of the leading consultants in vulvar disease in this country, for which I am very grateful. I am more grateful for the several opportunities the consultant enabled me to ask questions, which is a massive help and helps you form the questions you need to ask when you are on processing overload. I have received what I would describe as ‘all round care’, which I’d liken to a warm hug of support (social distanced of course!) from the hospitals Specialist Gynaecology oncology nurses. I’m now scheduled to have the wide local excision operation in early September and my next hurdle is to hope for clear margins. My op date also coincides with Gynaecological Awareness Month, which prompted me to share my experience to date. So this gets me thinking, ‘awareness’ what does this mean to me dealing with an issue, what do I think it should mean for every woman who hasn’t an issue? When I think about it, it’s really very basic, don’t be shy to hold up the mirror, do this regularly (once a month) and get to know your ‘normal’ or more importantly what isn’t normal and act on it. I spent far too much time thinking/worrying about it rather than acting on it, which I regret. So as I approach my 40th birthday, I know that it is highly likely this will be an on-going issue, as my consultant put it, “I’m on his Christmas card list’. So as I approach my 40th birthday, my birthday wishes include: •\tNurses who perform smears also have an awareness of vulvar disease and cancer, examine the vulvar area and ask basic screening questions about vulvar health. •\tGP’s are clear where gynaecological centres of excellence are and women are referred to these directly. •\tLet’s not be afraid to say the word vulva, either you have one, or someone you know does, so lets get over it. •\tWomen learn to know their normal – hold up the mirror, talk about it with people close to you, and the more people that do this the better. Normalise checking your vulva as you would check your breasts and don’t be afraid to talk about it/act upon something. I’ve posted about the issue on social media, knowing men would see it too, but remember men have wives, mothers, sisters and daughters too. Don’t leave them out or count it as a ‘female’ issue.
15 Comments
 It has taken me three years to ‘come out’ about my vulval cancer diagnosis. I was 29 when I was diagnosed with a rare form of vulval cancer, mucosal melanoma, and in one year I had five operations to try and remove the primary tumour with clear margins. I had just started working at my dream job, and nobody – least of all me – expected that I would need time off work due to a shock cancer diagnosis. And what could I tell all my new colleagues?
I told a few people that I had skin cancer – specifically, melanoma – and I got some sympathy, but not a lot of understanding. A couple of people told me that as a redhead, I should have expected a melanoma diagnosis (though mucosal melanoma is unrelated to sun exposure). At the end of business meetings, someone would inevitably take me to one side and show me one of their moles. Did I think it looked suspicious? Did it look like mine? None of these moles resembled what I’d had: a 4mm nodular growth that sat uncomfortably close to my clitoris. Outside work, I tried a different tack. I told friends that I had a ‘gynae’ cancer, and I left the rest to their imaginations. Some found a new way to blame me. Had I developed this disease because I had an STI? I heard more than a few jokes about my sex life. I tried to take the high road. Unfortunately, multiple wide local excisions could not ‘cure’ the disease. The post-surgery pathology results reported amelanotic (colourless, and invisible to the naked eye) melanoma that proved too challenging to detect and remove. I moved to a ‘watch and wait’ protocol, with regular gynaecology and dermatology visits, as well as routine body and brain scans managed by a melanoma oncologist. I enjoyed a few months of clear scans before the mucosal melanoma appeared in one of my lungs. The disease had progressed from stage II to stage IV. I had multiple tumours and this meant that I couldn’t have surgery to remove them. Instead, I started immunotherapy treatment (ipilimumab and nivolumab) – the standard treatment for metastatic melanoma. This time I only told a handful of people. I kept working during treatment and tried to keep my life as normal as possible. Immunotherapy didn’t give me any visible side effects so I was able to stay under the radar – but of course this meant that I didn’t get much support. Immunotherapy didn’t work. Melanoma doesn’t routinely respond to chemotherapy, so my next step was a targeted treatment on a clinical trial. There was no hope of curing the disease, but the trial drug was supposed to buy me six months of stability. I got married, went on a ridiculous number of holidays, and wrote my will. But the targeted treatment worked far better than anyone had anticipated – and as I write this, I’ve been taking the medication for 14 months and have had No Evidence of Disease (NED) for six months. For someone with incurable cancer, NED is as good as it gets. Nobody knows how long the melanoma will continue to respond to treatment. I’ve been wary about talking openly about my disease because of its intimate nature, and more recently I’ve struggled with the irrational fear that by sharing my lucky response to treatment I’ll somehow ‘jinx’ its future success. Starting my blog felt like a huge decision. I’m fortunate to have had access to phenomenal psychological support over the last three years, so I’ve never felt stuck for someone to talk to. As well as having a fantastic oncologist and trials nurse who always take the time to listen to my concerns, I have benefited from free therapy sessions at my local Maggie’s Centre. I can’t speak highly enough of therapy! It’s brilliant to have a non-judgemental, non-medical, sympathetic ear – and my therapist has helped me make sense of my diagnosis and my reactions to it. One of the topics I have yet to cover on my own blog is sex. Sex wasn’t really discussed during my gynae oncology consultations, although I had multiple wide local excisions rather than an immediate vulvectomy because my surgeon was working hard to maintain my sexual function. They hadn’t expected me to need so many repeat excisions, and my final operation resulted in a partial vulvectomy. Although my surgeon told me that my ‘vulval architecture’ had been preserved, i.e. all the nerve endings were still there, I no longer recognized my own body. I was struggling to keep up with all the physiological changes that had taken place in a relatively short space of time. Shortly after moving to ‘watch and wait’ (before I progressed to stage IV), I went on a retreat with the young adult cancer charity Shine Cancer Support. The long weekend (known as the ‘Great Escape’) involved a few discussions about sex after cancer, and I heard about psychosexual medicine for the first time. Why had nobody mentioned this to me before? It seemed as if I would almost certainly benefit from psychosexual therapy, but I was warned that there were relatively few practitioners out there – and if I wanted long-term support, I would probably have to pay. I wasn’t sure that I could afford to pay privately for this type of therapy – but I decided to explore my options and see if I had enough savings to fund a course of treatment. I didn’t know about the College of Sexual and Relationship Therapists at the time, but I’d seen a lot of adverts at bus stops in my local area that offered support to survivors of female genital mutilation (FGM). I emailed the FGM clinic to ask if they could recommend a therapist for me to contact. The FGM clinic sent my email straight to a psychosexual therapist in the NHS – as it turned out, the only person practising this specialty in my area – and two weeks later I started treatment via my local Sexual Health Service. I didn’t have to pay. I had multiple appointments over a period of two years, and as part of my therapy I was also referred to a trauma specialist who helped me to manage the PTSD symptoms I’d developed as a result of cancer treatment. My husband attended many sessions with me and we’ve been able to work on our relationship and explore the impact of my diagnosis together. Psychosexual therapy returned a sense of normalcy to our lives, and later gave me the confidence to start sharing more of my experiences with others. I found it very challenging to speak up about my diagnosis and the impact it has had on my mental health, but doing so has paid dividends. |
AuthorWrite something about yourself. No need to be fancy, just an overview. Archives
August 2023
Categories |
RSS Feed
