Richard Beechey is a Sales Manager from Stamford in Lincolnshire. He was treated at The Royal Orthopaedic Hospital (ROH) for a liposarcoma. Here, he tells his story in his own words.

“Over the past 25 years or so I have been troubled by a recurring atypical lipoma, which is a benign soft tissue tumour. Over this period I had it surgically removed three times, latterly twice at The Royal Orthopaedic Hospital (ROH). The tumour was large and embedded deep within my upper right chest area and under my right armpit. As nerves and vital arteries were embedded within the tumour, it was never possible to completely remove it and any procedure had the aim of removing as much tissue as possible from the mass. A procedure under Mr Scott Evans in July 2018, resulted in 1.2kg of tissue being removed, and it was estimated that around the same amount remained.

“Over the coming year, it was clear to me that the tumour was growing back aggressively, and at a follow-up and MRI scan in August 2019, Mr Evans was concerned enough to advise that a biopsy should be arranged asap. I had previously been warned that each time the tumour grows back, there was an increasing likelihood of cells becoming cancerous. The biopsy was arranged shortly after, and whilst at work, I received a call from Emma-May of the Oncology department that unfortunately it had revealed cancerous cells and they now needed to get rid of the whole tumour and that an appointment would be made for a consultation with Mr Evans in the near future.

“In September, my wife Lynn and I travelled to ROH to meet with Mr Evans and his team. During the consultation, it was confirmed that the tumour was now classed as a dedifferentiated liposarcoma due to its cancerous content. My wife and I prepared ourselves for the worst news, and Mr Evans advised that the only possible way to completely remove the tumour was to perform a forequarter amputation of my right arm. This is a disfiguring and life-changing procedure, and the news slowly sunk in during an emotional few minutes. Then Mr Evans made us aware that although the result was disfiguring, there was an opportunity to undergo a reconstruction which to the best of his knowledge had only ever been performed once previously in Japan. He suggested that we take break before going into detail, and he would ask a plastic surgeon colleague, Mr Jagadeesan, to join us upon our return.

“Lynn and I went outside for some fresh air and inevitably had a few tears. We decided to call our daughter Amy to give her the news, who had only a couple of weeks previously started her first job after university. Amy took the news in her usual stoic manner and assured me that I would be fine.
“Upon returning to the consultation, Mr Evans introduced Mr Jagadeesan and explained the procedure that was technically known as a reconstruction of the right shoulder using a free vascular osteo-myocutaneous forearm flap. Due to the fact that a forequarter amputation results in the loss of a shoulder and hence the symmetrical shape of the upper body, the reconstruction would be to fix part of my amputated right arm back on which would result in my elbow replacing my shoulder to give a symmetrical solution. Mr Evans and Mr Jagadeesan seemed keen to proceed with this solution, which the former referred to as “the funky version”! I was made aware that there were some additional risks and that the procedure would extend to around 9-10 hours as compared to around 2 hours for a standard fore-quarter amputation of an arm.

“This was a lot of information to take in, but Mr Evans said that a quick decision was required so that they could start to prepare the considerable team of people that would be required to attend the procedure. He also said that, due to the complexity and after care required, the operation would have to be done at the Queen Elizabeth Hospital Birmingham (QEHB). He asked if it were possible to have a decision the following day, and Lynn and I said we would find accommodation for the night locally and return the following morning.

“Having checked into the hotel, Lynn and I discussed the options over a pint or two (wine for Mrs B obviously) and we decided to go for “the funky version”. We returned to the next morning, and all concerned seemed pleased and a little excited upon our decision. On Monday 29 October, I reported in to QEHB at 7:30. Lynn and I had stayed Sunday night at a nearby hotel, and had enjoyed a good dinner which we jokingly referred to as “the last supper”.

“The procedure lasted around 11 hours and Lynn, who had been waiting at the hospital to see me, was persuaded to return to the hotel at around 22:30 as I was still in recovery. Not knowing what to expect, she will always remember being greeted by a beaming smile when she saw me the following morning back on the ward on the dot of visiting time. Thankfully, all had gone well. The care I received over the 10 days that followed was just amazing, and aided my recovery greatly. I was attended to by incredibly caring nursing staff, and quickly regained my appetite and strength. I also received visits from Mr Evans, Mr Jagadeesan and members of their team who assured me that the procedure had gone according to plan. Within 48 hours, the physiotherapist had me out of bed and standing and within a few days I was able to walk up and down the corridor and later on up and down the stairs to the shop. Over the 10 days, I received numerous visits from family and friends who seemed pleasantly surprised at my wellbeing and spirit.

“On 7 November I was discharged and convalesced at home, expertly and lovingly cared for by Lynn, and Amy who came home as frequently as possible. The stitches came out a couple of weeks later, and I attended QEHB again on 4 December when I was told that I was cancer-free and that no follow-up chemo or radio therapy would be required.

“I have an old friend, Phil, who lost his left arm in a motorcycle accident when he was a teenager, some 40 years ago. When I learned about my amputation, and before the procedure, I met with him at his workplace offices in Leicester. He told me that there was nothing he couldn’t do! He enjoyed fly fishing and also shooting at a very high level. He assured me that I would be just fine, and that you quickly find a way around doing most tasks single-handedly. He also said that I should put anything I couldn’t do to the back of my mind and concentrate on the things I could do.

“In December I was back at my job as a Sales Manager working from home, quickly adapting to typing with my left hand (my right arm was my dominant arm unfortunately). By January 2020, I was back driving and commuting to work in Wellingborough, some 40 miles away. My work colleagues were pleased and relieved to see me back and in one piece. Within a couple of months Covid happened and I was back to working from home.

“Throughout 2020, life continued pretty much as normal (notwithstanding Covid) and I adapted to life as an amputee. My mindset was that my situation should have the absolute minimum effect on my life and the life of those around me. I focussed on the positive nature of the reconstruction part of the process, thinking how it could have been worse if I had not been in the fortunate position to have this done. I can honestly say that I have not had any negative days, and am still living life to the full – quickly adapting and enjoying the challenge of digging the garden, planting shrubs, mowing the lawn, cooking, housework, cleaning the cars (look out – one handed pressure washing can get a bit wild!) socialising and enjoying holidays (when possible). I have a variety of gadgets and aids – a spinner on the car steering wheel, electric corkscrew and salt/pepper mills, one handed forks with serrated edges etc. I do suffer from “phantom limb pain”, which is a bit weird to begin with, and varies in intensity.

“The love and support of family and friends has been overwhelming, and they quickly realise that I am the same old me, just with a bit missing. During the latter part of 2021, I started to get back to rehearsing with my band The Amber Squad which was first formed in the late 70’s. This culminated in our first “come back” gig – our first since 2019 (my last with two arms!). The concert in my home town was sold out and was a very emotional event. Also, early in the New Year a couple of friends took me fishing, a hobby I have enjoyed since I was 11, and am determined to conquer in my present state. They adapted the tackle set up so that the rod was supported and I could cast and wind with my left hand. I managed to catch three pike, the largest being 15lb 4 oz, in a most memorable day.
“In December last year, I also undertook the annual 5km ‘Santa Fun Run’ in Burghley Park, in memory of my dear step-father-in-law, who we lost to cancer in 2021.

“Two years on, hardly a day goes by when I don’t think about Mr Evans, Mr Jagadeesan and the other amazingly skilled individuals that performed the procedure and gave me such an incredibly high level of care and support in the days following. I was so pleased to be able to make a donation to The Royal Orthopaedic Hospital Charity from the proceeds raised from The Amber Squad concert in December.”

Earlier this month we had the pleasure of organising a commemorative bench from a patient who has been visiting us here at The Royal Orthopaedic Hospital (ROH) for two years.

Mick Rodden contacted us after looking out of his side room window at the green space behind our Outpatients Department whilst he was an inpatient with us. He wanted to organise a bench to remember his time with us as well as give back to both patients and staff who utilise the green space for reflection.

Here is a note that Mick wrote to us after the bench was installed. It shows us that giving isn’t just imperative for us to support the ‘added extras’ at ROH, it is something that gives our donors pleasure too.

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Mick said: “ROH. looks after the repair and healing of the body and everyone on the wards trusts the dedication, quality and professionalism of the staff whose sole aim is to get you home feeling far better than when you were admitted. And they do that, they do it because they genuinely care. Everyone from the car park attendant, the cleaners, physios and nurses to the wonderful consultant and the rest of the team are patient-focussed.

“For myself, I have been coming to ROH for two years now, interrupted due to the COVID pandemic. I thought when I was transferred from my local Kettering Northants Hospital in 2019, I would be losing my leg but you have changed all that. I haven’t lost my leg and I have a positive vision for my future, being 70 doesn’t kerb my ambition.

“Mending the physical problems is what you do best, but you also make a difference to the patient’s mental health, the humour, the advice, the positivity, the different characters (crazily funny nurses and health care assistants) who treat and support us all make that difference.

“Donating towards a bench seat or table was an easy choice for me. I just asked the question, and it was done automatically. The charity does so much for the patients and staff wellbeing.

“This seat is something that patients, visitors and all staff can use, just to get away from the ward and relax for a short time whilst in pleasant, quiet surroundings especially in the summer can be an enormous benefit.

“We sometimes forget that the wellbeing of the people who look after us so well is paramount to our own successful healing.

“Thank you all at ROH.”

We would like to thank Mick for his contribution to supporting wellbeing at ROH as well as all of the donors, fundraisers and sponsors who make our work possible.

To donate or contribute towards this cause, simply contact the Fundraising Team via roh.charitablefunds@nhs.net or by calling 0121 685 4379.

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.