Sleaford grandmother who works for Kidney Cancer UK speaks about lack of support after her own diagnosis
A brave grandmother has spoken out about her earth-shattering kidney cancer diagnosis - and how the lack of support turned her world upside down.
Geraldine Fox, 67, a retired civil servant from Sleaford, found the diagnosis difficult to cope with emotionally and didn’t know where to turn.
“Life before the diagnosis was pretty good,” she remembers.
“I was in a responsible job as a contract manager in the civil service which I enjoyed, and I thought was important.
“I had a great home life, my health seemed good, I was enjoying being a grandmother and looking forward to retirement.
“When I first got symptoms, I thought it was a bad UTI, which I’d had before, although there was pain in my side but not when urinating, and much more blood in my urine so it was different.
“I realised it could be more serious when my GP sent me to the local hospital for a scan straight from the surgery, and I was admitted.
“I was given the diagnosis of kidney cancer in the middle of a busy ward by the duty doctor following a CT scan.
“I felt shocked – like the world stopped. I felt fear, disbelief and panic.
“I knew nothing about kidney cancer, the diagnosis came out of the blue, and I didn’t know what it meant.
“I didn’t know whether I had a few weeks to live, or whether it was treatable.
“It was a very difficult three weeks after my diagnosis before I first saw a specialist and could be given any more information about what I was dealing with.”
After being discharged from hospital with the initial diagnosis, Geraldine felt completely alone and scared.
Just before leaving hospital after her diagnosis, Geraldine had been given a booklet from charity Kidney Cancer UK, so she decided to give them a call.
“In desperation, I poured out how I felt to a very sympathetic nurse on the other end of the phone, and that conversation helped bring down my panic a lot,” she explains.
“I needed reliable information, someone to talk to who understood what I was going through so I didn’t feel so alone and someone who could reassure me that I might have more than a few weeks to live.”
She continued speaking to the charity regularly whilst waiting to see a specialist.
A week after the diagnosis she was readmitted to hospital because she was unable to pass urine due to blood clots.
After undergoing major surgery to remove a kidney and the tumour, Geraldine was left to deal with the emotional turmoil of recovery, constant worries about cancer recurrence, and a sense of abandonment by the healthcare system.
Geraldine was discharged from hospital three days later and expected there to be some emotional support of some kind, but there was nothing.
“While my cancer had been removed, I was having to deal with recovery from a major operation,” she recalls.
“Stage three cancer was confirmed and new thoughts arrived – had they got it all, would it come back, how do I live with that constant concern about recurrence. I felt completely abandoned emotionally.
“Recovery was hard, it’s a major operation after all, but it’s not the first operation I’ve had so I knew what to expect.
“My family were wonderful, and their support made all the difference. I had no support from the NHS after discharge from hospital other than the usual six-week post-op check-up.
“I turned to Kidney Cancer UK for information and emotional support. It was six months after my operation that I first met another kidney cancer patient, at a patient day held by Kidney Cancer UK.
“After recovery I wanted to help Kidney Cancer UK improve support for other patients, so I started to volunteer with them, but my time was limited once I returned to work.
"Although I went back to work after recovery on a phased return basis and afterwards worked part-time, the importance I’d previously given my career wasn’t there anymore and I no longer felt able to deal with the stress my job entailed.
“I felt like I’d had been very lucky that I had been stage three, in that my cancer hadn’t spread away from the kidney.
“So it felt like a second chance, and I really wanted to do more to help the charity improve things for future patients and spend more time with my family.
“By coincidence my employer was running a voluntary exit scheme, so I took advantage of that and took early retirement to see more of my children and grandchildren, and also increase my help for Kidney Cancer UK.
“I also became a carer for my recently widowed mother, which I continued to do until her death last year.
“Being diagnosed with cancer has truly changed my life.
“I received support from the charity’s health professional team, which was crucial, giving me someone to talk to when I needed it, information about kidney cancer, which I knew nothing about, Facebook groups hosted by Kidney Cancer UK where I could get support from other patients, and patient days where I could meet other patients for the first time.”
After her operation, Geraldine began ten years of follow-up with regular scans – and with these appointments came anxiety.
“Every time I had a scan, the anxiety became more acute, and every time I had to wait months for scan results, my anxiety peaked,” she said.
Ten years after her operation, Geraldine was discharged from hospital after a routine follow-up and her anxiety returned.
She said: “I kept thinking: ‘what if my cancer comes back, who should I turn to, how would I recognise it, what other support is available?’”
Looking back, Geraldine believes she should have had professional counselling at various points during her diagnosis, treatment, and follow up - a fact that is backed up by a report by Kidney Cancer UK.
The research found that over a third of patients were unhappy with the way they were told they had kidney cancer, and over a quarter of patients also reported feeling abandoned after surgery.
“The lack of any kind of automatic referral for emotional support for such a serious condition is leaving patients like me exposed to the need for medication for physical symptoms of stress, as well as significant distress and turmoil,” she added.
“This makes the patient pathway very much more difficult, and probably wouldn’t happen if some kind of emotional support was available when needed.”
Geraldine now works as a trustee of the charity to do as much as she can to help others in a similar situation.
She also wants to raise awareness of the condition - and how the charity can help those suffering.
“Kidney cancer often has no symptoms, so it comes out of the blue for more than 50% of patients when they are being investigated for other conditions,” Geraldine adds. “I now feel great.
“We have moved closer to our son and his family, so we see more of them.
“I continue to help Kidney Cancer UK and other patients while also being able to have quality time with family and friends.
“As my involvement with the charity grew, I got to know other members of the charity’s staff and they helped me start a face-to-face group in my local area alongside local NHS staff.
“All of this helped my mental health by giving me something to focus on and a way of giving back for the support I was given.
“Being involved in the charity has also helped me move on with my life after treatment and recovery.
“While there is still a small chance my cancer could return at some point in the future, I don’t focus on it anymore.
“I prefer to get on with my life while I am able to, and if it returns or I’m diagnosed with another serious condition I will deal with it at the time.
“My approach is that none of us know what the future holds, so I try to make the most of each day, living more in the moment than I used to.”
