In Feb 2008 whilst fooling about with the other half, I felt a sharp pain on the right side of my abdomen between my rib and hip. On further investigation I felt a lump shaped like the top of an egg. A couple of days later, encouraged by my husband, I visited my GP who examined me and agreed the lump was out of the ordinary and ordered a blood test and ultrasound. I was told my bloods were fine, but I had a 9cm growth on my right kidney. Seven days later I was seen by the most arrogant urologist ever, who greeted me with the words “Well one thing I can tell you, it’s not cancer” I said “How can you be sure?” To which he replied, “Your blood and urine are clear and with a growth that size you’d be flat on your back very ill, not sitting there smiling at me!” After a cursory examination, to be sure, he ordered a CT scan and biopsy. After 10 days I chased for the CT and biopsy date because I knew the tumour was getting bigger.
April 2008, I went to the return appointment. The urologist said to me “Definitely not cancer, it’s neurofibromatosis (Thank goodness I made him write this down) it’s taken 10 years to grow; not on your kidney but attached to your spine.” I told him “No, this has grown since I last saw you, I can’t close my legs and I feel as though I’m pregnant. Please examine me.” He said, “No it’s just your imagination, you’ll get another appointment to sort it out.”
I left and went home to think. This was my local hospital in Essex.
4am next morning I woke up and started researching on the internet. I found a specialist in Manchester for neurofibromatosis. At 9am, I rang the specialist’s secretary who gave me the name of a clinician at Guy’s Hospital in London which was nearer. I called Guy’s Hospital and explained my dilemma to the secretary who said the consultant would see me as urgent with a referral. I called my local urologist’s secretary to be told he was going on holiday next day (‘pleased’ does not cover my relief at not having to talk to him!). At 11am that same morning I made an appointment to see my GP who I have known for years and who had delivered my children. I told him that “6 weeks ago you examined this lump, would you mind doing so again please.” He agreed it was definitely bigger, and he could feel it across the whole of my stomach. I related what had happened at the previous day’s appointment, that I had done my research and that I needed a referral. He initially declined as it would have to go through the urologist, (he too looked happy when I told him the urologist was on holiday). The referral was faxed through to the professor at Guy’s Hospital within 2 hours!
One week later I was examined by the consultant at Guy’s and sent for an immediate CT scan. She phoned in person the next day to say it was definitely NOT neurofibromatosis and she would like me to see their urologist, he had seen my scan. One week later, the Guy’s consultant sat me down with the words “IT DEFINITELY IS KIDNEY CANCER”. I was booked in for a full radical nephrectomy in 2 weeks, there was no way I was going to go back to my original hospital in Essex. The tumour and kidney were removed 4 weeks later 15th May. The tumour was a stage T2 Nx Mx, Furman grade 3 or 4 and it was 19cm big. They also had to take away a small part of the bowel wall where the tumour had become attached. At the beginning of June and follow up scans, I was told I was clear and asked to take part in the SORCE clinical trial. This is a trial called an adjuvant trial and it was looking to see whether taking drugs earlier could stop kidney cancer spreading to anywhere else in my body.
Alongside all this, my father was told he had terminal mesothelioma with a prognosis of six to eighteen months max. It was a day of highs and lows. Luckily, because of my own research about kidney cancer, I knew about NICE and so researched his treatment before seeing the oncologist with him. I was able to make sure that dad got the best possible treatment. I never told my dad I had cancer, he had his own fight to fight, having lost Mum to breast cancer when I was 12, I just couldn’t tell him.
Even though SORCE was a double-blind trial, it was quickly obvious I was taking the active drug called sorafenib. I persevered; my hair stopped growing and thinned until I had to wear a wig, my feet and hands were unbearably painful, I could hardly walk or even hold a spoon. I took treatment breaks but eventually had to leave the trial. I returned to work but could not sustain the role, which required lots of activity including moving and lifting tables and chairs. In addition, I was taking on more caring for dad, taking him to hospital appointments, taking him to chemo, radiotherapy, sorting his drugs etc.
I resigned my job, but as a fully qualified driving instructor I took on more pupils and fitted my appointments around dad’s needs and my own appointments at Guy’s Hospital. I was still clear of kidney cancer and in April 2009, we took dad on a Baltic cruise. Dad had always wanted to see St Petersburg and although he was in a wheelchair, the trip gave us such wonderful memories and I was still clear when dad lost his fight on my birthday in March 2010.
In August 2009, my husband and I had brought a small Winnebago. 2008 had been our wakeup call. We started saving and in August 2011 we brought a 35-foot 11-ton Winnebago, took our lorry licences and I took my artic licence so we could have a car and trailer. On 23rd Jan 2012 we moved out of our home and into our bus, rented out our house and started our travels.
In May 2013 we set off for Scotland, we got as far as Lincoln before I was recalled to Guy’s Hospital. The kidney cancer was back and had metastasised to my lungs.
Post sorafenib, watch and wait was prescribed with a prognosis of six months to six years, no one knew. In August 2013, I was there to see my daughter graduate from University and in October still in our big Winnebago bus, we left to spend the winter in Spain, our first time. I flew home from Spain in November, January and March for routine appointments at Guy’s Hospital and within two days of our arrival back in the UK in April 14, I started on pazopanib. Pazopanib was effective for me and two shrinkages followed, and I have been stable ever since.
In 2015, my son and partner gave me my first granddaughter, and in June 2018, a grandson. In 2016, I walked my daughter down the aisle to be married.
My husband and I are now residents of Spain. I transferred my care from Guy’s in London to St Lucia Hospital in Cartagena, a Spanish centre for cancer treatment, in October 2019. My urology consultant speaks excellent English and I continue to take pazopanib which is still holding my kidney cancer stable. It was so sad to say goodbye to the team at Guy’s Hospital who have been so supportive of my travels over the years but they have left the option open for me to return to Guy’s if things don’t work out.
We reluctantly sold the Winnebago in 2016 and purchased an American 5th wheel. In 2019 that too was sold, and we have moved into a park home on the same camp site but we own the small pitch outright giving us a small but secure base. We have a Hymer motorhome which we live in for the four(ish) months which we spend travelling during the summer. Our UK house was sold in 2018/19.
Life is generally good. Would we have done this without my diagnosis? I don’t know, I just know I love my life!! 💝