Jo's Story

55-year-old Jo Riley works as a Services Manager for the charity Change Grow Live, supporting people with substance misuse issues. She is a single parent of two wonderful men and was diagnosed with Vulval Cancer in February 2022, after experiencing post menopausal symptoms such as vaginal dryness and itching.

This is her story.

I had already gone through menopause and amongst many other symptoms had experienced vaginal dryness and itching - I had seen my GP about this on a number of occasions and been prescribed creams to help. I consider myself to be fairly fit and active, regularly doing Pilates and walking a lot. Walking would sometimes irritate me more and I got used to soreness and slapping on extra creams. In January this year I felt more itchy and sore than usual so had a look to see what was going on and noticed a pea sized lump on the edge of my labia, I was concerned and discussed it with a friend, she told me she thought it was a bartholin cyst and not to worry, my gut instinct told me it was more than that. I thank god for not listening to her, I went to see my GP who thankfully referred me to my local hospital in Great Yarmouth, and said the dreaded words “under the cancer care pathway”. 

On January 18th I had a biopsy, and on February 2nd was told the heart-stopping news that I had vulval cancer. It was then that my whirlwind journey began. One week later I had a CT scan, and thankfully the results were good news, the cancer had not spread. The following week, I was seen by my consultant who explained my treatment plan, and told me that I would have an operation in 4 weeks time to remove the cancer and sentinel lymph nodes. At this point the care I received was outstanding, I was given a named oncology nurse and told they would call me weekly for support, this didn’t happen though. I waited for an appointment and after a couple of weeks, I called the hospital to be told I would have to wait 12 weeks! I found this news very distressing as I just wanted the cancer gone. I was aware of target dates and was able to calculate my target date for treatment and when I told the hospital of my date and mentioned that I would be well outside of my target date for treatment breaching timescales, I was offered an appointment for surgery on 25th March 2022, this meant I was 1 week outside of my target timescales, but I was relieved and happy to get the operation done. 

I had a posterial vulvectomy on the 25th March at a hospital in Norwich which was still operating under COVID restrictions, post-discharge I was on a general ward, the staff were amazing, but were not gyne specialists so the care I received was lacking in information for my type of surgery. I was discharged the next day. The aftercare was non existent, I was sent home with no advice and just told to keep my wounds clean and dry. Prior to my operation I had not been prepared for what was next, I had no idea of how it might look, feel, and levels of discomfort I may experience. I had no contact with anyone from my oncology team, and was not given any written information on how to care for myself. My recovery was hampered by an infection at the lymph node sight and the only contact I had with my oncology team was when I called them to discuss the wounds, they advised I saw my GP, the GP was inexperienced and clearly didn’t know what my diagnosis was let alone infected wounds, he diagnosed a hematoma and told me it could take weeks to disperse. Eventually I was given antibiotics to clear the infection.

Prior to my operation I had not been prepared for what was next, I had no idea of how it might look, feel, and levels of discomfort I may experience.

I had been told that I would have my histology results 2 weeks after my operation, lymph nodes were being tested for cancer cells, so I was desperate to hear the outcome. 2 weeks came and went, and no news, my care had been between 2 hospitals, I am under the care of the Great Yarmouth hospital, but had my operation at a hospital in Norwich, they hold a weekly multidisciplinary team meeting where all patients are discussed and had been told the results would be discussed there and that I would be contacted by my team. When I contacted my oncology nurse about my results I was told they would be available the following week, they were not. 5 weeks later, I was feeling so distressed my good friend called my consultant on my behalf to ask what was going on and expressed to her how this was affecting my psychological well-being. Later that afternoon, the consultant called to tell me the good news that there were no cancer cells in the lymph nodes, and that I had been given the all clear, and she told me to have a celebratory large gin! Which obviously I did. So a wonderful outcome for me, which still has not sunk in yet, I feel so grateful that my treatment from diagnosis to treatment to all-clear in just under 3 months.

I consider myself incredibly lucky and grateful, but … I’m still not ready to celebrate. I have been left feeling traumatised by my experience, the physical trauma of my operation, the speed at which all this happened has left me feeling shell shocked with no time for my head to assimilate what’s gone on. 

I feel that my experience could have been made easier had I been more prepared for the after effects of the operation, possible complications and hospitals that have systems that talk to each other meaning information and communication between the hospitals would have been enhanced. When I was diagnosed I was given a pack with information about support services very helpful, loads of websites to access, and as an educated tech savvy woman I am able to negotiate the support available, but can’t help but feel this approach to self aftercare and support should not be solely done via reading leaflets and accessing websites, not everyone has access to a computer or knows how to negotiate one. Sometimes people just need to talk to someone without having to be assessed over the phone for 45 minutes first! I am now back at work and living with ongoing nerve pain, which I am told will settle in the coming months, a small price to pay though, but I am left feeling fatigued and still coming to terms with all I have been through. I am one of the lucky ones. I appreciate that. 

The message I want to get to women is please “get familiar with your fanny”! We are so good at checking our boobs but how often do we take a mirror to have a good old look down there? If things don’t feel right get it checked, especially if you are peri or post menopausal as there are so many changes going on at that time, don’t take it for granted changes are due to menopause. Please get familiar with your fanny! 

A huge thank you to Jo for sharing her experience in detail and sharing an all important message.