My name is Ida and I’m currently a stay-at-home mum to my two children, and I live in Leeds. My story begins in December 2013. I had just turned 39 when I started to experience troubling bladder symptoms. I often had the sensation that my bladder was uncomfortably full, but I was unable to empty it. I also had other symptoms, such as feeling exhausted, having moments of weakness, feeling as if I was coming down with flu, aching limbs and dizzy spells. I started to feel very anxious and had a strong sense that something was seriously wrong. I began to wonder if I had a disease such as MS, and went to the doctor to describe my symptoms. He dismissed most of them as anxiety, but I was referred to a urogynaecologist at a local hospital to investigate the urine retention. She felt that damage caused by childbirth could be responsible for my bladder symptoms, but ordered an ultrasound scan to make sure there were no ovarian cysts.
I had the scan a week or so later. The radiographer spent about 20 minutes looking around the bladder area and conducting tests. The atmosphere was light-hearted and we chatted away as he did the scan At the end he said he’d just have a quick look at the kidneys. The right kidney was fine he said as he moved on to the left kidney. At this point the atmosphere changed. He spent a long time looking at the kidney. He asked the nurse to get hold of my consultant urgently. I started to feel worried. All he would tell me at the end of the scan was that there was an abnormality and he would arrange for me to have a CT scan the next morning. I had an appointment booked with another urogynaecologist later that day to perform further tests on my bladder. At the end of the tests he said, “So, as you know, we’ve found a shadow on your kidney. We don’t know what it is, but we’ll treat it as cancer and refer you to the Urology Cancer Centre at St. James’s hospital in Leeds.” My head was swimming. I couldn’t understand why they were treating it as cancer. Surely I couldn’t have cancer? I was a healthy 39 year-old with no family history of this cancer. It didn’t make sense. The doctor told me how lucky it was that it had been caught early before I started having any of the classic kidney cancer symptoms, such as blood in the urine. He finished by saying; “If I was you, I would walk out of this room feeling like I’d won the lottery.” I realise he was trying to help but, unsurprisingly, I didn’t feel like a lottery winner. I left the room shaking and broke down in tears. A kind nurse rushed over, made me a cup of tea and hugged me as I sobbed.
An appointment was made for the following week with an urologist at the Urology Cancer Centre. I spent the days prior to this appointment feeling dazed, frightened and confused. I still clung on to the hope that there had been some terrible mistake. I read that kidney cancer was extremely rare in people (especially women) under 45, so I told myself I must have a benign tumour.
I met the urologist who told me I had a 4cm tumour on the kidney. Because of it’s central location they would have to remove the whole kidney. I asked of it was malignant and he said there was a 95% chance it was. This is when the reality of my situation hit me. I felt shocked and scared. I feared death but the thought of leaving my young children without a mother was what horrified me more than anything. The urologist said, “I want to give you a hefty reassurance that we can cure you with surgery alone”. It was these words that provided me with great comfort in the months ahead, and still do.
I was passed over to a cancer specialist nurse who took my husband and I to a private room. She was wonderful. She sat with us for about an hour while I cried continuously and asked questions. She was very knowledgeable and answered all the questions fully and calmly. She was a huge support to me over the next few months.
My surgery took place a month later and went smoothly. I recovered well physically. I found the most difficult part was waiting for the pathology report. I waited about 3 weeks and then was told I was stage t1a (the earliest stage) and grade 3 (a more aggressive cancer). I was considered low risk for recurrence.
For several weeks I felt elated. It’s like I was walking on air the whole time. This amazing feeling of euphoria and relief. Then suddenly the fear returned. I began to worry about the fact it was grade 3. I hadn’t Googled the cancer up to that point, but once I started I couldn’t stop. I became obsessed and would spend hours each day Googling grade 3 kidney cancer. This lasted weeks and had a very negative effect on my life and my interactions with my family. One day I realised I had to stop. No amount of Googling would tell me what would happen to me. My future was unknown. Maybe I would live to 100, maybe my cancer would return and I would die in a few years, maybe I’d get hit by a bus tomorrow. All I had was today and I was determined to enjoy each precious day with my family.
Groups such as the UK Kidney Cancer Support Network have offered me comfort and support whenever I’ve felt scared. Being able to talk to others who understand your fear is invaluable.
Life has changed for ever. I’m very thankful to have remained cancer free for three years but I shall always live with the fear of the cancer returning. I feel most people don’t understand this lingering fear. Every cough, every headache, every ache and pain terrifies me. But life has changed in a positive way too. I truly appreciate each moment now. I have a new awareness of how precious and fleeting life really is and a permanent sense of joy just to be alive. I hope I am now a kinder and more patient person. For this I shall be eternally grateful to the cancer.