In January 2012 when l was at work one day l noticed a small painful lump in my groin. I left work early to see my GP and after being examined l was told that l had an abscess in my groin and was given antibiotics and advice should it not improve. After a few days it burst and it went away. So when in May it reappeared l went back to the doctors, on my third abscess and visit l saw a different doctor and after he finished examining me he just said get dressed and then we will talk. I could never in my wildest dreams have prepared myself for what he said next. I was told l have another abscess but he also thought l had vulva cancer.
How do you tell everyone you love and care about that you have cancer? Your family, your friends but the hardest thing for me to do was to break this news to my children. At this point all three of my children were old enough to know that there was something very wrong with me, so l made the decision to be honest with them. My children were 23, 13 and 8 at the time. I kept all information strictly to the facts and my youngest burst into tears, jumped on my lap and said “Mommy are you going to die?” all l could think to say to him was no baby mommy is going to have an operation and fight this. My heart broke into a million pieces, how could l die? how could l leave my babies? The truth was l just didn’t know what was going to happen. Each day passed in a fog waiting and waiting for the phone to ring, l was so desperate for that call to come.
Terrified but ready to start a battle l knew nothing about, myself and my mom headed to the hospital. It was explained slowly that l would need an operation called a Radical vulvectomy and removal of lymph nodes in my groins. He was so patient with us answering questions, drawing pictures nothing was too much trouble ‘I am confident that we can sort this, and no you are not going to die… well not right now’ he told me. I was relieved that l had a date but another wait so l took the children out of school and we went to Cornwall camping to spend some time together before surgery.
The surgery went ahead as planned l was so nervous l just didn’t know what to expect but five days later l was home with the Professor confident that he had good margins. Six weeks after surgery l was given the news that there was no evidence of spread. The Professor explained that l would need to stay on 3 monthly appointments, ok l thought l can do that, that’s not a problem. So four months after my cancer surgery l returned to work, l needed to restart my life again, l needed normality.
My three monthly appointments had become routine. At a routine appointment in March 2014 the shock came like a punch in the face, a new suspicious area that needed removing. Everyone close to me was so distressed, in my mind all l could think was, you have to be strong, you have to stay strong for them and then they will cope better. The problem was l didn’t feel strong at all, inside l was crumbling, screaming. I hated me and l hated the way l looked now and despite people around me l felt so alone and so scared. Once again my children’s and my family’s lives were turned upside down again.
More surgeries followed in 2015 and 2016. It was between these two surgeries that they impact of what was happening to me started to show in my children. In 2015 my youngest son was diagnosed with an eating disorder, he had not eaten anything for six weeks! The next blow came from my son’s psychologist who said that it was because of me and my illness. My boy was sick because of me. I needed to fight for my boy, he needed me.
As my health continued to decline my children were suddenly now my carers. I felt so defeated even over the most basic things so l spent most of my time hiding away in my room. My children were suffering mentally and physically and too scared to leave me alone in case l fell again. My family were all standing with me feeling helpless as they watched all that was happening and many of my so called friends had now disappeared and carried on with their lives.
As things stand right now l am currently under three different hospitals, gyna/oncology, pain, and urology. I have district nurses every six weeks to change my suprapubic catheter at home and a CPN who sees me on a weekly basis. I see a counsellor each week to help me process some of my thoughts and feelings surrounding my treatments. People think you have cancer then you have surgery, chemo, radio etc and then its over and you just pick your life back up. For me surgery was just the beginning of what is a very long, painful, ongoing journey.