How my story begins: I had always had my smear (Pap) tests & never had an abnormal result. Around mid 2013, I started having very light postmenopausal bleeding. I saw my doctor who confirmed my cervix was covered in blood & as a precaution would need to be referred for further testing. On the day, a smear (Pap) test was performed & was clear. However, the markers in my blood were raised & a cyst was visible on my cervix. I was told that it was highly unlikely I had cancer, but due to my age (57) they would recommend a hysterectomy. Following the operation, my son was told everything was fine & they were still adamant the tumour was benign. Now I realise that I'm in a very small group of ladies, at the time 40 worldwide, but I was astounded to be told, on the phone by a nurse, that not only did I have cervical cancer, I also was going to need, and I quote, "lots & lots of treatment." Also, at this point, the tumour was so rare she couldn't give me a name for it!
Life before my diagnosis: I had gotten to that age where the boys were now men & both living happy fulfilling lives. I also had my granddaughter who was eight & a blessing. After a divorce, I spent many years on my own. Ten years ago, I met a partner who just happened to be ten years younger. We shared the same interests & both of us valued our own space. I had a busy administration role in a bank & had worked there for over twenty years.
How I felt after diagnosis: I was completely blindsided by my diagnosis & full of anger that a nurse, who had no permission, could be so heartless to phone me at home, not even asking if there was someone with me. There wasn't. Turns out I had clear cell mesonephric tumour.
Telling my family and friends: I took the coward's way out. I sent the same message to family & close friends. I said unfortunately I've been diagnosed with a rare tumour that would need a lot of treatment. I also asked them not to try & contact me that day to give me a chance to take it all in. I tried to contact my partner in person & told him face to face. He had moved in with me for a few weeks to help me recuperate from my abdominal hysterectomy.
My treatment: I had my first consultation with my oncologist about six weeks post op. I took my sister, who had just gone back to work following an aggressive breast cancer that had only been discovered at her scheduled mammogram. I also had my partner & youngest son with me. The oncologist told us that the tumour was not known to respond well to treatment. However, she did say there was no lymph node involvement & drew us a diagram showing the particles left behind post-op. I've since discovered that the treatment I received was fairly standard with the radiotherapy targeting the remnants of the tumour. I had six chemo, thirty radiotherapy & three brachytherapy. I missed one chemo session due to my bloods not behaving & touch & go with another. So I managed five out of six.
How I felt after treatment: After treatment felt like the worst part of all. Basically, I knew that my oncologist had given it her best shot. I had also got up, got dressed, put one foot in front of the other & I had done everything that was asked. I remember having my last brachytherapy procedure Christmas Eve, having Christmas day off & my final radiotherapy on Boxing Day 2013. There was nothing. Just completely wiped out.
What was most difficult for me: I had never had a serious illness & the aftermath was horrendous. I had no independence. I felt like a child both physically & emotionally. I wanted my mum but I had lost her the year before to lung cancer. I understood how hard it was from the other perspective. I questioned myself. Had I done enough when my mum was ill?
What I did to help myself: It was literally baby steps. I would try & walk a short distance most days. If the weather was bad I would just walk around my house. I started meeting friends for coffee. I had to try & get some normality back. It was slow. My confidence was at rock bottom. I lost a job that I had worked hard at for many years.
My life after cancer: I believe things happen for a reason. I felt driven out of the workplace, but on reflection, I would not have coped with the stress. I now live on two pensions & some savings. I volunteer for a cervical cancer charity. I try & keep active. I swim, do yoga & Tai Chi.
Where I am today: Today, I'm learning to live with my limitations. Due to aftereffects of treatment, I can't stand or walk long distances. But on the up side, I've got my other activities that I can do. I've learned not to focus on the fact that I had a rare tumour. It really doesn't matter because everyone of us is on a journey. Yes - my stomach still flips at every examination & scan. Again, we all live with the what ifs! Yes, the C word is always going to be lurking but I'm still going to travel, go to concerts, go out for dinner, meet up with friends, both old & new. I'm going to live my life to the best of my ability!
What I want other women to know: I'm a bit of an oddity in as much as I'm a lot older than the normal age group who are diagnosed. I want to tell them that yes, a smear (Pap) test is an inconvenience, might even be a few minutes of discomfort. But the other scenario is, at best, life changing treatment. There are women dying leaving young families. Please get checked on a regular basis.
How I will try to help others: In the UK, we only have one charity solely dedicated to Cervical Cancer - Jo's Cervical Cancer Trust. I have been training to act as a volunteer. I try to spread the word about cervical cancer screening & the importance of testing. I've had a lengthy discussion with my doctor & oncologist who have agreed to display more leaflets, etc. A shocking statistic is that, in Scotland, take up rates for testing has fallen to 60%. This has got to improve dramatically.