Helen's Story
We must encourage women to talk openly about their gynaecological health, to raise awareness and understanding of the five gynae cancers and to appreciate what feels right for their bodies. If something isn’t quite right get it checked out.
In the spring of last year I received my third positive result for HPV and was referred to Leicester General Hospital for a biopsy. Whilst I was waiting for this to come through I discovered what I thought could be vaginal cysts in the inner wall of my vagina. I was also experiencing increased lubrication when having regular sex which I thought was unusual for a woman of fifty nine. My GP said to mention it when I went for my biopsy and I duly did. I can remember joking with the doctor who mentioned that I had an unusual healthy cervix. Alarm bells should have rung when I was called back just over three weeks later. My appointment was the next working day after a Bank Holiday and because I was at work I had tried, but failed to speak to anyone at the hospital.
Thinking my appointment would be routine I took myself off to the hospital, expecting to be told that I would require some sort of simple procedure. I wasn’t prepared to be told as soon as I sat down that I had cancer and to my horror vaginal cancer! I had heard of it but knew so little about it. It was quite a lot to take in! I was told that they needed to find the primary source of the cancer and would need CT, MRI and PET scans. Surgery and radiotherapy were mentioned and whatever course was taken the result would significantly affect my sex life. It was a lot to take in, especially for a woman who enjoys making love nearly every day.
Within the next few days I had the scans and was dealt with so efficiently and kindly by the NHS. A telephone appointment with my consultant revealed that there was no primary source, which was the best news I could have been given.
What should I tell everyone? Cancer news is difficult to share in itself but vaginal cancer, well it’s a bit embarrassing. I decided it was best to be upfront about it. My husband has been amazingly wonderful from the beginning and my daughter, who is a neonatal nurse, has been outstanding with her love, support and honesty, always discussing my options. She reminded me of the complex vaginal surgeries that are now available and she gave me the core strength to fight for what I wanted. My sexuality is so important to me, I was going to fight for it.
I was diagnosed with stage 1 cancer with poorly-differentiated adenocarcinoma from the biopsy from the vaginal wall. My options were radiotherapy, but if that failed I’d be facing removal of everything in my lower abdomen. The other option was surgery, total vaginectomy and full hysterectomy. I asked about vaginal reconstruction but again this could be tricky if radiotherapy was required after surgery. I had a weekend to make my decision and it was my daughter who encouraged me to have the reconstruction. I asked for another meeting with my consultant. I needed him to understand who I was, to get me and to reinforce very strongly that I didn’t want him to touch my bladder. I would certainly say to anyone facing these decisions to make their consultant aware of important personal choices. He asked me if quality or quantity of life was most important. Without hesitation I replied quality.
A friend advised me to trust and get to know my cancer nurse and I can not underestimate how much Kerry has done for me. I was sceptical at first, not really taking in the severity of it all, but Kerry has been my rock, so kind and ready to help me with any questions I’ve had. She sorted out my appointments and has always been available for me to discuss any worries that I might have had.
I was booked in for surgery at Leicester General Hospital in mid July, potentially fifteen hours and with three surgeons. I approached it as if going on a mini break, buying coordinated nighties, towels, new make up and books. I was acutely aware of the time, money and expertise being put into me. I was upbeat and positive and deeply aware of how lucky I was that it was all happening so quickly as I could feel that the cancer was spreading inside me.
In the end it was around nine hours of surgery and everything miraculously had gone to plan. I was incredibly relieved when my consultant was there telling me this when I woke up. It was a tough ordeal for everyone close to me and the relief of getting through the operation was huge. Post surgery I felt like I had a completely changed body. I struggled to get out of bed, but made myself walk around. The tops of my legs and lower abdomen felt numb due to nerve damage. The worst thing was having a bladder that refused to work independently an so I was discharged with a catheter and supply of bags. I felt horrible but I just had to get on with it. It wasn’t going to be the glamorous recovery I had hoped for!
Returning home and my early recovery was challenging. I shut myself away and concentrated on getting through each day. My husband looked after me so wonderfully well, my daughter was incredible and my son gave me lots of advice on the importance of improved nutrition. Family and friends didn’t push me, they listened and supported what I needed. Kerry gave me the stability I needed to trust what was happening to me. We are all different and I hated having a catheter, my stomach, not being able to bend or lift anything. My scar looked like a huge inverted 7 running from my rib cage across and down the full length of my abdomen, due to the skin and muscle being removed for the vaginal reconstruction. It hurt to cough and moving was painfully slow. I read a lot of books and kept positive, my mantra being ‘this time will pass’.
When Kerry rang me after three weeks to give me the news that all of the cancer had been removed and that the margins were good. I was overwhelmed. I hadn’t really considered an alternative and I had put 100% of my faith into my consultant. I think getting this news really shocked me into realising what I had been through.
Over time, I have continued to make a steady recovery. I put myself on a flip flow catheter to get my bladder used to storing urine again. I had a few failed attempts at the hospital to try and get it working independently but slowly things improved. After three months I was taught to self catheterise. My bowels haven’t been back to normal at all but I can manage them. It is like getting to know a whole new body. My stomach is slowly going back down although, because of the reconstruction, I have one side bigger than the other, which I desperately hope I can have surgery to straighten out. I know in the scheme of things it isn’t that important but I’ve had body issues since I was fifteen. I am now six months post surgery and things are going in the right direction. A scan revealed everything was healthy and my bladder is working well, I’m down to self catheterising just once a day. My new vagina has healed well and the next step is to use dilators in the first step in returning to sexual activity. It’s exciting but scary!
I have found a yoga channel for daily post abdominal surgery workouts ( Yoga with Joy ) that I have been doing for the last three months. I also try to do a half hour to hours walk every day. I’m feeling stronger, moving more easily and staying strong.
I can look back and realise how incredibly lucky I have been that the cancer was detected early. I owe my life to the incredible surgeons and the NHS. Vaginal cancer is rare and having reconstruction isn’t always possible or available. You have to trust your consultant but you can challenge what you are told and get your wishes across.