Kaddy Benyon is a poet and former television scriptwriter. She lives in Cambridge with her husband and two children. In November 2020, she began her journey as a patient at The Royal Orthopaedic Hospital when she discovered a lump. Here is her story…

“In November last year, getting changed on the riverbank after my daily swim, I noticed a small lump in my left thigh. At first I thought it was a bite or a bump, but it wasn’t itchy and it didn’t hurt. When it hadn’t gone down after a few weeks, I went to my GP who was concerned enough to refer me for a scan. Two days before Christmas, I had an ultrasound which quickly led to an MRI and then to a CT scan and I was referred to The Royal Orthopaedic Hospital (ROH) for a biopsy which came back inconclusive; the only option was to have surgery to remove my mysterious guest.

“On 24 February 2021, I was admitted to Ward 4 at the height of the most deadly wave of the COVID-19 pandemic. I was a long way from home and unable to have visitors for the duration of my week-long stay. It was a frightening time but would have been more so had I not been cared for by such compassionate, intuitive, playful and encouraging NHS staff.

“I would like to say a great big ‘THANK YOU!’ to every single member of Ward 4 staff who checked my leg, monitored my blood pressure, oxygen levels, sugar levels, who injected me as painlessly as possible, who helped me to the loo, who washed me, fed me, filled and refilled my water jug (sorry, thirsty gal), cleaned my room, changed my sheets, told me about the weather, who smiled at the photo of my children by my bed, gave me morphine, who showed me how to self-inject an anticoagulant into my tummy, who encouraged me out of bed when I couldn’t bend my leg, and who helped me access the Wi-Fi so I could Zoom home. I am especially grateful to the nurse who caught me when I fainted the first time I stood up, and to the crash team who burst in as though we were in an episode of Casualty!

“Once I was well enough to make the journey back to Cambridge, I was greeted by my husband, kids, cats, cards and curry. I made a speedy recovery at home, mostly I think because I was so desperate to get back in that river of mine! I have swum almost daily throughout adulthood, mostly in my local pool. Around six years ago, a friend invited me to swim with her in the river from a small, unassuming club in Newnham she was a member of. I fell hard for swimming in nature, so I joined too. For the first five years, I only swam on the hottest days of summer, often taking my children for play swims. But as the virus began to take hold again last autumn, I felt I couldn’t face another indefinite period without pool swimming, so along with some of the women I had met at the riverbank club (now affectionately known as The Swim Sisters), we decided to see whether we could swim through winter in the river. I was certain I wouldn’t be able to tolerate water any cooler than 17 degrees, but buoyed by companionship and adventure, all of us kept turning up day after dark, rainy day – my own coldest swim being 2.5 degrees on the day I had to start isolating before surgery.

“By March I was able to hobble along the riverbank on my crutches and to watch (and envy) my swimming sisters. At my check-up in April, I was a gazillion miles beyond relieved to learn that the tumour had been benign. And two weeks after that, thanks to my physio, my acupuncturist and of course my cheerleading swimming sisters, I was finally able to get back in the river and resume my daily swims.

“I now have a cracking 8″ scar along my left thigh and a permanent disfigurement, having lost two thirds of one of my quadriceps. I have also had to learn to walk again, to drive, to ride my bike, and of course to swim. Sometimes I need to go slowly as I am liable to cramp in the part of the muscle I still have when I overuse it.

“On Sunday 26 September, some of my swim sisters and I will attempt to swim the 2k stretch of the River Cam between The Orchard at Grantchester and Sheep’s Green near Lammas Land. If you are local and would like to support us in person (or even if you’re not so local but fancy a day trip to Cambridge) please do come to either the start point, the end point, or any of the riverbank along Grantchester Meadows and cheer us along, you’ll be able to spot us by our neon tow bags! We estimate being in the water for about an hour, and we will (hopefully) celebrate our achievement with coffee and cake for all at the finish. My lovely school friend and her partner, who run My Persian Kitchen in Cambridge, are very kindly donating two delicious Persian Love Cakes – they are not to be missed!”

Kaddy raised £1000 in her sponsored open water swim and has worked with the staff on ward 4 to develop a meaninful way to utilise the funds within the department. After much discussion with the ward team, Kaddy and Ward Manager – Yi Kessey, agreed that the funds will be supporting wellbeing facilities for staff on the ward.

These funds have enabled the department to receive revitalised break facilities on Ward 4 where she spent most of her inpatient stay. This included refreshment facilities, a new coffee machine and new smart TV for staff to utilise whilst on their break. We cannot thank Kaddy enough for her fundraising support and for sharing her story with the world.

To share your story or support ROH Charity in any way, contact us on 0121 685 4379 or email roh.charitablefunds@nhs.net. 

Natasha Paczkowski is a patient at The Royal Orthopaedic Hospital (ROH). She lives in Newcastle under Lyme with her daughter and dog, Teddy. In March 2019, she discovered a lump which was later diagnosed as myxoininflammatory fibroblastic sarcoma, a form of cancer. Here is her story…

“One evening I was drying myself after having a bath when I felt a lump the size of a marble at the back of my leg. I thought it was weird but never thought in my wildest dreams it would be anything sinister as I had never heard of sarcoma at that point. As it was the weekend, I put it to the back of my mind. First thing on Monday morning I phoned my GP surgery and spoke with the receptionist who asked for a brief reason why I need to see a doctor. I explained I had found a lump and I needed it checking, but she explained because it wasn’t painful, “it won’t be anything serious so I can offer you an appointment in five weeks’ time.” I accepted and the wait began. 

“In that time, the lump had grown from the size of a marble to the size of an egg and I had gone from not giving it another thought, to googling and finding out about sarcoma and now worrying day and night about what it was. I went in and the GP asked me lots of questions. If it hurt, had I banged it, how long I have noticed it etc. I said I thought it was probably just a cyst but thought it best getting checked out. Right away she said she was referring me to the local cancer centre on their two-week waiting list.

“I went to see my local consultant, who requested I had an MRI just to be sure so the anxious waiting continued. Over three months I underwent three MRI, a CT and PET scans, two lumbar punctures and lots of blood tests before he admitted they had actually run out of tests to perform and he was referring me to The Royal Orthopaedic Hospital (ROH) for a biopsy.

“Unfortunately, the first biopsy come back inconclusive! So, I was told I’d need another biopsy preformed this time under general anaesthetic and I would be an inpatient for five days. The anxiety was high as I’m also a single mum to a child with special needs so preparing her for me leaving and being away from her was hard on top of the anxiety over the surgery. The surgery went well, however, and I was discharged after five days with a 3cm wound to my knee.

“On the second day of a holiday in Wales, I got the call from my team nurse. “Natasha, we have the results and I’m afraid its cancer.” It didn’t come as a surprise to me. We arranged for me to come into clinic the week after and I ended the phone call in a daze, not knowing if I should just carry on the holiday with my daughter as normal while inside my head was spinning.

“A week later I was given a consultant: the fantastic Scott Evans, who has such a manor about him he fills you with confidence, reassurance and has a general caring nature about him.

“In September I was taken in for removal of some swollen nodes and another wait for the results. By this point I was getting frustrated and scared. I now knew it was cancer and I’d had it since March when I found the lump and we were now six months in with no treatment. A week passed and I received a letter to come in the following week. I arrived at that appointment just ready to discuss treatment and get things going. Scott told me he was surprised to find that the swelling in my lymph nodes was actually the cancer that had spread.

“I sat there in a daze of shock. For some reason I hadn’t been as concerned with the lymph node swelling like I had those months before with the original lump. Scott explained this now changed things as the treatment would be much more complex than simply cutting it away.

“Two weeks passed and we were now in October the frustration and anxiety mounting knowing I still had this thing in me growing by the day. I saw Scott who had consulted with another leading surgeon in London who had agreed to treat me and have a one-of-a-kind surgery at The Royal Marsden Hospital in London. This surgery was called isolated limb perfusion or (ILP) for short. By the time I’d had a scan in London and the initial consultation it was now November by the time I’d had the date for this surgery.

“In January, Scott explained that unfortunately, IPL surgery wasn’t successful and that I would need the tumour cut out in a surgery called limb salvage surgery. However, this time I’d need to be cut from my groin to ankle with a hole around my knee cut out where the tumour was and I’d need to be in hospital for a month.

I had the tumour cut away in three separate surgeries, after the second surgery, I received partial results from pathology. That was enough for Scott to confidently say there was no more cancer left.

“The reconstructive surgery was then brought forward a week to reconstruct where the cancer took over. This was a nine-hour surgery due to the fact I had lost three muscles to the cancer and they had to fill the hole the tumour had made. I remember when I was waiting to be put to sleep, Scott come into the room and asked how I was feeling, to reassure me I was in safe hands etc. I asked him how many people were waiting to work on me and he said around 15 people! I still can’t quite believe I had that many people helping to save my life in that one surgery alone. ROH were there for me again and I had Carol, a Macmillan councillor, to talk through my worries and help me through and who continues to be there for me to this day.

“I look back on the last 18 months and I can see how strong I have been. Learning to walk three times, multiple surgeries and third-degree burns from radiotherapy have been extremely hard to deal with but I recently celebrated being one year cancer-free! I had a tattoo done with the saying “with pain comes strength” because if I can take anything from this it truly is the strength that I never knew I had. I don’t think I would have gotten through it without Scott and the wonderful staff at ROH making sure I feel 100% supported and I felt reassured through the whole process that they truly do have the best interests of their patients at the forefront of their work.”

Natasha fundraised for us in 2021 and raised over £500 in support of the oncology ward in which she stayed.

All the funds raised will go towards supporting the ward with initiatives to support patient experience as well as supporting families and carers of those who visit the ward. Not forgetting providing specialist training, equipment and knowledge to the staff on the ward.