News & stories Personal stories Vix Published March 2022 My cancer journey started back in May 2018. I was 53 years old and working full time running a busy reception desk in a hotel. I was working long hours and I was always tired. I went swimming one day and had a new swimming costume. I commented that my tummy was hard! The next time I went swimming I really struggled to get out of the pool, climbing the steps to the changing rooms was like a mountain hike. I had to ask my friend to help me put my knickers on - I really couldn’t lift my leg. How odd. I struggled to get into my clothes and had to buy elastic waist trousers as clothes just didn’t fit. Work was really intense, I just couldn’t cope. I went to the doctor, who I felt just dismissed me. After various appointments at the doctors we were getting nowhere and my tummy had now swollen very badly. I couldn’t eat and I was full easily. The doctors thought I had a hernia, so I was put on the hernia diet… Basically drinking water and eating very plain and very little food. After getting nowhere at the doctors I insisted on seeing a nurse practitioner who was really good, I showed her my tummy and said I am not pregnant with twins. She started me on my journey - booking an ultrasound. It was a long wait to get a date and the poor sonographer was horrified at the size of my tummy. I thought I might pop when I arrived. She said, “Oh god you have ascities - don’t Google that”. I said, “Oh, I have already read about it”. They wanted me to go to hospital that day, but nobody would take me as they didn’t know which department to put me in. A new doctor at my surgery took over and was fab, she listened and said to do a blood test. It was a CA125 test and my reading was 70 (normal range is 0-35). So then she instantly suspected ovarian cancer. I saw a gynaecologist quite quickly and after an examination he said he didn’t think that I had cancer. He said we would order a CT scan just in case. Well, my CT scan showed that I had a lump, as they first called it. They decided at a multi-disciplinary team meeting to remove the lump and do a hysterectomy. This was arranged quickly for a date in August. After my op, which was keyhole, I was out of hospital in one day and recovery went well. I waited three weeks to hear my lump/tumour was cancerous and the size of a big teacake. I was diagnosed with fallopian tube cancer stage 3b, so not ovarian but a rare reproductive cancer - typical. I knew nothing about it, but it’s treated the same as ovarian cancer, so I was aware of the plan. In September I started chemo, my hair fell out just before chemo round two. I held a fundraiser and raised money for cancer charities. I coped with chemo really well and in January 2019 I was NED (no evidence of disease). Life was ok, but I was super tired, and chemo had made my osteoarthritic knees a lot worse. Eventually it was decided I couldn’t cope with going back to work so my life totally changed. I set up a charity in my hometown raising money for Christmas Lights and we raised £15,000 in year one. That kept me sane, and it has continued to grow. We have other projects in the town too. Life was ok, I kept busy, I napped a lot. I signed up for counselling as I felt lost after all my hospital visits and doctors appointments. In lockdown 2020 I noticed my tummy was getting bigger. I had an incisional hernia after my op, which suddenly got a lot bigger. I was in and out of hospital a couple of times with sickness and pain. Later in lockdown I saw a hernia surgeon who said I needed to get my cancer sorted before my hernia - so the tummy was full of ascites again. A drain was arranged and back on chemo we went – this was odd as it was in lockdown and I hadn’t seen my oncologist in ages. Lockdown chemo was different - we moved to a different hospital due to Covid and you had to go on your own. My hair went again. I had just got it to a lovely length and style - typical. But a new wig was quite good and I enjoyed being a blonder version of me with long hair. Chemo was ok, I coped again. Sadly my cancer is recurring so it can’t now be cured, but can be managed. I finished chemo on New Year’s Eve. No New Year plans luckily as there was a lockdown. So we continued into 2021 and I now take a Letrozole tablet each day. This seems to be keeping my cancer at bay. My CA125 was 11 at my last blood test. I stayed in a lot and avoided people. The fear of Covid was strong. A friend and I arranged a virtual raffle in March 2021 for Ovarian Cancer Awareness Month and raised £2,000 for Ovacome and two other cancer charities. All three charities were so helpful and I have learnt lots from them. We decided to be brave and go on holiday in October 2021. We had a wonderful time in Greece, but yes, I caught Covid. Luckily being double jabbed it wasn’t too bad, a nasty flu. But tiredness after Covid was really hard on me. I am still suffering with fatigue and my joints are still very sore… Sadly my doctors surgery have not improved. Two local ladies I know were diagnosed after me with ovarian cancer and sadly both have died. We still need so much more awareness and for doctors to think: “This could be ovarian cancer”. Ladies of all ages are still being diagnosed, it is so sad. I am on a fabulous Facebook group - there are a lot of members. Recently a few have sadly lost their battle. I fight on for them. Yesterday I had my blood test for my 3 month check-up. I have been having a few tummy twinges, so I am praying that it’s my hernia and not the dreaded cancer back again.