Sara, 50, says…
“After being fed up with continual urine leakages, I took a friend’s advice and booked an appointment with my GP to get it checked out – I never expected to be diagnosed with kidney cancer. After much uncertainty, my first operation by nephrectomy confirmed I had stage three kidney cancer, although the surgeons did manage to successfully remove one of my kidneys. In Northern Ireland, where I’m from, I couldn’t find that much useful information, so I sought some extra guidance and support from Kidney Cancer UK – the UK’s leading kidney cancer charity. It’s an organisation I’d really recommend to anyone else who finds themselves in a similar situation and unsure where to turn.
“Sadly, my cancer returned and my survival rate went down from 70% to 30%. Despite the success of a second major operation, my cancer is likely to return yet again. But I’m not losing hope – it’s all part of the ongoing journey of life.”
Sue, 56, says…
“I was diagnosed with anal cancer in 2011 and was very lucky to be diagnosed early. It was also fortunate I had private health insurance thanks to my job – my biopsies were borderline and the NHS wouldn’t treat me until I had a positive result. If you can get through cancer, you can get through anything and it definitely made me a stronger person. I had six weeks of chemo and radiotherapy but only ended up having to take three months off work. I don’t know how I did it, but I just wanted to get back to normality. I still have health issues and am still being monitored, but it doesn’t stop me doing anything I want to.
“As it’s so rare, I now volunteer to help people who’ve been diagnosed with the same cancer. My passion has always been photography but having cancer really spurred me to pursue it. I now have my own website and have had lots of my photos published. It’s my escape – it keeps me sane. Since my diagnosis I’ve also tried to do a challenge event every year as I’m so grateful to be alive. I’ve done a fire walk, glass walk, abseiled, sky dived, run two half marathons and walked up Pen y Fan (the highest peak in south Wales). My next goal is to climb Snowdonia. Every day, I’m so grateful I’m still here.”
Kate, 64, says…
“In March 2017 I was diagnosed with a stage two invasive left breast tumour. I was diagnosed and treated at Guy’s Hospital. I felt very calm when I was diagnosed, and throughout my treatment I was determined just to follow the advice of the experts and get rid of the cancer. My treatment plan included having the tumour removed and doing a sentinel node biopsy at the same time to check for any spread to my lymph nodes. All being well, I would also need radiotherapy and to take Tamoxifen for five years. After the first operation, the good news was that the cancer had not spread to the lymph nodes. However, the surgeon hadn’t been able to get what they call ‘a clear margin’ (I had pools of pre-cancer cells called DCIS). After the third operation, it was recommended that I have a mastectomy and I had to decide whether to go for a reconstruction or implant. I went for the latter as it had quickest recovery time. The operation went well and they managed to keep my nipple!
“As a result of the mastectomy, my prognosis was very good and I didn’t need any radiotherapy after all. Since then, I’ve been under the care of Guy’s, with annual mammogram checks on my right breast and I’m still on medication. My care from the breast cancer team has been incredible and I can call them any time with questions or concerns. I also went to Breast Cancer Haven in London who were incredibly supportive. This June will be my last check mammogram – afterwards I will return to the national breast screening program clear of cancer.”
Deborah, 59, says…
“My husband was 61 and we had been married only a year when he was diagnosed with stage 4 four mantle cell lymphoma. We had thought the lump under his arm was just a simple lipoma, as he has had these removed in the past. When the oncologist gave us the bad news, I had that elevator feeling as my stomach dropped. He was just about to retire and now everything was thrown into confusion.
“His diagnosis was two months before the start of the first lockdown. We were told they didn’t want to treat him straight away – we should watch and wait. For all of 2020 we stayed home together. We had lovely friends and family meetings on Zoom – but we were not allowed to have anyone in the house. He then contracted pneumonia in December 2020, totally out of the blue. The oncology team said this was the signal to start treatment. So, from February 2021 to July 2021, he had chemotherapy, involving intermittent three-night stays in hospital. Then in July, he was admitted to hospital for around three weeks to have a stem cell transplant. I was home alone for three weeks and most of the time he was too ill even to speak on the phone. It was devastating.
“In terms of support, our children, and our wonderful friends were always there for a chat, a walk or a Zoom. But I couldn't help thinking in the normal state of things we would have had so much more practical support. Having chemotherapy for lymphoma in a pandemic has to be one of the scariest things you can ever go through. He was neutropenic – and with such a low white blood cell count, any infections could have killed him. I’m a doctor, but nothing can prepare you for looking after someone you love who is so ill. But I was determined not to let my husband have any infections – so my mission was a war on germs! Thanks to this fastidious approach, he is now six months post-transplant and doing well.
“My advice to anyone in a similar situation would be to have faith in the doctors treating you. We were so lucky – the University Hospital Southampton has been voted the best lymphoma treatment centre in Europe! When they gave us instructions, even if sometimes it seemed a bit odd, they were always right. Also, stay positive and don’t be hesitant to ask for help. Other people want to help, they just don’t know what to do. If you ask for some shopping or for them to pick up a prescription for you, it all feels so much better. Set up a WhatsApp group so you can send the daily news out once only to everyone who needs to know and find time to take care of yourself. No one knows how hard it is for the carer until you become one. I just adapted to doing things when they needed doing – often in my dressing gown or in the middle of the night when I couldn’t sleep. But try to enjoy simple pleasures, like sitting in the garden and feeling the sun on your face.
My two sons are also now about to become bone marrow donors. It is a practical way we can give back. I wish I could do it but I’m too old. I am about to become a blood donor instead. My husband – now back cycling again – wants to raise money for Lymphoma Action. We are just so grateful for the excellent care he has received and, although at times during his treatment he faced his darkest moments, it was so worth it to see him so well and happy now.”
Mary, 55, says…
“I was in disbelief when doctors broke the news that I possibly had kidney cancer following an unrelated CT scan in October 2017. I was shocked to hear I might need major surgery to remove part of my kidney. Prior to my kidney cancer diagnosis, I’d been diagnosed with Ehlers-Danlos syndrome (EDS), a rare and complex condition that affects connective tissue that provides support in skin, tendons, ligaments, blood vessels, internal organs and bones. Like almost half of kidney cancer patients who are diagnosed after being investigated for an unrelated condition, I received a call the following day to confirm that I had possible kidney cancer. I felt so scared – I had never even heard of kidney cancer. I just wanted to get it out of me.
“I started Googling the disease to try to suppress my worries. Thankfully, I came across Kidney Cancer UK and was overwhelmed with helpful advice and support. I visited my local hospital about ten days later only to be told I would need my whole kidney removed in nephrectomy surgery, a treatment that most (82%) kidney cancer patients require. I was referred to see a specialist at the Royal Free Hospital in London for a second opinion. Thankfully, the consultant said that the safest treatment option would be a partial nephrectomy, which meant only part of my kidney needed removing.
“After careful consideration, I booked the partial nephrectomy for November 2017. The operation was intense, and I was in the high dependency unit for a week before I was allowed home – thankfully, the surgery was a success. For the next 18 months, I was back and forth to the hospital to visit various consultants about my ongoing conditions. I was also diagnosed with another rare condition during this time – antiphospholipid syndrome, a disorder of the immune system that causes an increased risk of blood clots.
“Thankfully, I didn’t need any drug intervention for kidney cancer and I’m now under surveillance and see my consultant every six months for scans to check the cancer hasn’t returned. Today, I’m determined to help raise awareness of the disease with Kidney Cancer UK. They provide excellent information and support for patients and their families, and we’ve managed to raise several thousand pounds for the charity. I’ve also set up my own project donating Butterfly Boxes to kidney cancer patients. The boxes contain essential items, treats and support information. Patients can feel quite lonely through their journey, which is why I started the business. There needs to be more awareness about this type of cancer – as well as support for patients – so I’m hoping to be part of the change.”
Gillian, 51 says...
Following a routine smear test, I was diagnosed with cervical cancer about six years ago. The funny thing was, I felt fine. I later discovered I had a rare form of cervical cancer that isn’t easily detected. When the MRI results came through, we found out it was stage one. The treatment plan was a full, robotic hysterectomy – one of the first performed in the country. I remember the consultant was excited about that! Following the operation, I discovered the cancer had spread. What they had thought was stage one was actually stage 2b. I underwent six weeks of chemo-radiation followed by a stay in hospital in isolation while undergoing brachytherapy. The consultant said we only had one shot – if even one cell remained, then six months later, I’d be back, with the cancer having returned. The treatment was rough. Yet, all the way through, the hospital staff jollied me along. My friends and family stayed by my side. When I crumbled, they kept me strong. The forum, Jo’s Cervical Cancer Trust, was also a great help. In March 2021, I got the all-clear. However, cancer has left its scar – I have lymphedema in my leg following the removal of lymph nodes and I also suffer from exhaustion, which sometimes leaves me drained for days. But I’ve learned to adapt. Cancer may have changed me, but it’s also allowed me to pursue my dream. I write and illustrate children’s books – that’s one thing cancer hasn’t stopped me from doing.