Another in our series of personal stories from ladies going through womb cancer.
"I consider myself one of the lucky ones. My story so far is relatively short, though full of soaring highs and bottomless lows and fingers crossed, is almost at an end.
Although I didn’t know it, my story began in September 2013 with what I thought was an unusually heavy period. My menstrual cycle had always been irregular in all senses but this felt different. I had to phone in sick to work as I was unable to leave the toilet because the flow was so heavy and steady. I went back to work the next day and made a routine GP appointment for two weeks later. The GP told me that it was likely to be connected to age and although I am only 41, it could be the start of the menopause. He prescribed tranexamic acid and said I should take it the next time I experienced the symptoms. I left feeling quite unsatisfied as I wanted to know for sure what the root cause was and as a teacher, I was terrified of starting a bleeding episode in front of a class but I took my prescription and left.
A couple of days after Christmas I started to bleed again with no warning beforehand. It was as if a tap had been turned on. I sat in the toilet for couple of hours, convincing my husband I was okay and that it was ‘just my age’ but I was worried. When I tried to stand up, I almost fainted and called my husband in. He was horrified by the amount of blood he saw but as it had died down and it was in the middle of the festive season, we decided on a call to NHS direct before going to hospital. They advised me to double my dose of tablets and allow three hours before calling for an ambulance. Thankfully the bleeding stopped.
As soon as the surgery opened after Christmas I made an appointment with a female GP and she referred me for an ultrasound as soon as possible. On January 30th, I was lying on the sonographer’s table expecting a quick scan and a long wait for results. However, the internal scan dislodged something and I started bleeding on the table. It was awful. The department was totally unprepared for this kind of bleeding and so they wrapped me in a blanket, stuck me in a wheelchair and left me in a side room whilst they called for the on call registrar. By this time it was 5:30pm on a Friday and most of the staff had gone home. I was terrified and had never felt so alone.
After a 20 minute wait, I was soaked through and very shaky but a registrar finally arrived. She looked between my legs but couldn’t see clearly because of the blood and so called an HCA in to shine a large torch in the right direction. At this point, nothing could humiliate me! The only thing the registrar said during the whole examination was, “Oh dear, this isn’t good. We’re going to admit you.” And then she left. I was so frightened and as so often happens in these situations, my mind began playing worst case scenarios on a loop.
I was admitted to the ward and given my own room which was both a blessing and a curse. A second registrar came in and examined me. I can’t remember anything else he said apart from the one word: cancer. I had to stay on the ward attached to drips for the whole weekend and had MRI and CT scans booked for the Monday morning. The bleeding almost stopped and I felt physically fine so the thought of my life being in imminent danger was almost surreal. I called my husband and he came to the hospital straight away. We sat and talked and cried for much of the evening and agreed that he would contact my parents and sister in the morning as I could barely speak. In many ways, it was a very special weekend as my room filled with family and friends and eventually, the diagnosis slipped into the background.
However, Monday morning soon came around and that was when I first met Mr Owens, my consultant. He examined me and said that it was without doubt cancer and it looked to be a very large tumour on the cervix but we would need to wait for the results of the scans and of a hysteroscopy that would be done under GA the next day. I just sat back and let the great NHS machine take over. I was wheeled here, there and everywhere and at one point had eight people all looking at my lady parts but I didn’t care. I just wanted to know what was happening and how we would deal with it. On the Tuesday, Mr Owens confirmed that it looked very like a Stage 2 cervical cancer and that he would be recommending a course of radiotherapy and maybe chemo when the MDT met. I was discharged and went back to work whilst I waited for the results.
At the end of that week, my CNS called and advised me I would be meeting with the oncology team to plan the radiotherapy the following week. My husband and I waited for the obligatory 90 minutes to see the oncologist but we did not hear what we expected. He told us that the pathology revealed that in fact I had Stage1/2 womb cancer and that the tumour was creeping into my cervix. He told us that this was good news as surgery was now going to be the way forward and I would be meeting Mr Owens again to discuss a radical hysterectomy. In five minutes, my journey had taken another unexpected turn!
We met almost immediately with Mr Owens who told me I was booked in for the 20th February. He listed what I would be losing: my womb, ovaries, fallopian tubes, cervix, top third of the vagina and some pelvic and paraortic nodes. He also listed the horrendous things that could go wrong and possible side effects and got me to sign my consent form. Within days, I was at my pre-op assessment being measured and weighed and given more information. Those three weeks really went by in a blur. I was in the machine and there was no time for me to say stop the ride I want to get off!
By the day of the operation I was all cried out and everything went swimmingly up until the moment my porter came to wheel me down. The theatre I had been booked into had a fuse blow and so I was going to one that had only just opened, the epidural wouldn’t go in and during the course of the operation things hadn’t quite gone to plan and I’d had to have blood transfusions. However, when Mr Owens told me that he thought they’d got it all out, all of these things melted away. I couldn’t believe it.
The recovery in hospital was slow. I was there for eight days in total and found being washed by strangers and eating hospital food quite difficult initially but I soon became institutionalised. I also found my 45+ clips and 8 stitches impossible to look at! My hospital ran an Enhanced Recovery Programme which meant I was up and at ‘em from day three and even had a shower early on. However, it did take me nearly an hour to work out how to get my nighty off and how to wash my hair. On night five, the wound from the drain site began to ‘leak’ and I had to have a stoma bag fitted to cope with it. By day six, I’d made an agreement with one of the nurses that we would put bunting out when I finally had a bowel movement. By day seven, we had success although at the time I thought something was badly wrong as no-one had told the iron supplements would turn it a darker shade of charcoal. By day eight, I was painkiller free, had climbed the stairs unaided and I was desperate for home so I was finally discharged on the proviso that the District Nursing team would come and change my dressing for the drain site wound.
That was 16 weeks ago now and it seems like a lifetime away. I’ve had a follow up meeting at which I was told that I need no further treatment. I was offered brachytherapy but the odds of a recurrence of my non-aggressive form of cancer would only be reduced from 4% to 3% and so we agreed to get on with life. I’ve had infections and still have a recurring pain due to scar tissue but in the words of the oncologist, I’m “cured”.
I think the diagnosis and my recovery has been very tough on my husband, parents and sister. They have seen me at my very lowest and apart from the actual treatment, have felt everything I have been through. I have used the WCSUK support group as my lifeline and I know that they would have benefitted from speaking to other relatives of cancer patients too. For me, being able to check with other ladies that I’m ‘normal’ has kept me sane!
I’ve been overwhelmed with the support I have received from the NHS and can’t help but think of myself as lucky. I’ll be going back to the hospital for five years before I get the all clear but I can live with that! "
If you are willing to share your story then please use then please email wcsuk@hotmail.co.uk
xx Kaz xx
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