“My journey starts in September 2021 where I had a night out with my husband, and we had a good dance! The following morning, I found my right knee was aching. Over the next few months, I experienced intermittent pain but not so bad that I felt the need to visit a doctor. I continued walking our dog daily and exercising in the gym with a small amount of discomfort.  A few months later, I accidentally knocked my foot and felt my knee jolt.  As the day progressed, the pain was unbearable, and I could no longer weight-bear.  I visited A&E where they performed an X- Ray but nothing unusual was identified. I was sent home with crutches and pain relief medication while I waited for an MRI scan appointment.

The results of the MRI were a huge shock.  I was told I had a suspicious lesion in my distal femur bone that was most probably a tumour.  The consultant could not tell me anything more at that stage and referred me from his care in Bristol to the Royal Orthopaedic Hospital (ROH) in Birmingham as they were the experts and could take the diagnosis further.

I received a call from the ROH several days later.  The nurse said that my case had been discussed at the MDT meeting and I would need to travel to Birmingham to see a consultant.  In late February, my husband and I made the journey for the initial appointment where we met with Professor Jeys and his team.  I was scared and emotional as I entered the room but was instantly put at ease by their caring manner.  Professor Jeys talked us through the images and confirmed it was a bone tumour. He went on to say that the severe pain I had experienced which led me to A&E was most likely a fracture of the bone caused by the tumour.  The plan going forward would be for me to return as a day case patient for a CT Guided Biopsy under general anaesthetic (GA) so they could identify the tumour.

The day of the biopsy arrived, and I was anxious as I had never experienced GA before.  My husband left me at the doors of the day-case unit where I was greeted by a lovely nurse. In fact everyone I met that day was caring and explained what was happening clearly. The procedure went well, and I returned home.

I had a call a week later to tell me that histology confirmed the tumour to be a Giant Cell Tumour (GCT) and I would need to return to see a consultant who would explain more about treatments available. At the appointment, we met with Mr Kurisunkal. He told us that the results were in fact inconclusive but pointed to GCT and I would need a second biopsy.  It was upsetting to hear this, but he went on to explain that GCT’s are not always easy to diagnose and of course, he needed to be sure that the operation he performed would be the correct one. 

Following the second biopsy, Mr Kurisunkal told me they had ruled out cancer as far as they could and that with my consent, he would perform Intralesional Curettage to remove the tumour, a healthy margin of bone and replace with cement.  Every detail was covered including the risks and outcomes of the procedure.

I was admitted as an inpatient to ROH in April 22.  Knowing how fantastic the staff are strengthened my courage and this time was no different.  I must mention the theatre assistant who sat with me in the anaesthetic room for about 30 minutes before I went in for surgery.  We talked about so many things including our favourite curry and cocktails.  As I went off to sleep, he held my hand and told me he had ordered me a cocktail for when I woke up.  I went to sleep smiling.

A few hours later, I learnt that the operation had gone well, and the tumour was removed successfully. The next day I was up and about with the help of the nurses and physiotherapy team. I felt ready to go home and start my recovery.  I had to partial weight-bear with crutches for six weeks along with exercise and rest.

I returned to see Mr Kurisunkal seven weeks after surgery. At this appointment, I had an X-Ray and he informed me that everything looked great. It was such a relief.  I was now able to start walking our Cocker Spaniel, Ernie which I had missed doing so much.

GCT’s are benign but aggressive tumours and the follow up is a scan and consultation every three months for two years and every six months for a further three years.  Unfortunately for me, my tumour proved to be aggressive. 

Within a few months of surgery, I was experiencing pain in my knee. I called the oncology team, and they booked me in for an MRI and consultation.   A week later, I learnt I had tumour regrowth and further treatment would be needed. I had the option to have repeat Intralesional Curettage or Radio Frequency Ablation (RFA), to burn the regrowth.  With the guidance of Mr Kurisunkal, I opted for RFA as the procedure is not so invasive and has a quicker recovery.  This surgery was in November 22 and the histology confirmed recurrent GCT.  As we got nearer to my next three-month check, the pain returned.  Again, I called the team and was given an appointment to return sooner.  MRI confirmed that I had further tumour regrowth.  I underwent another round of RFA in early March 23.  The histology was not conclusive following this procedure.  Within two months the pain was back!  A call to the team and I was booked for an MRI and consultation. Unfortunately, there was further regrowth, and it was agreed that the best option would be to have repeat Intralesional Curettage surgery.  In June, I was admitted as an inpatient where Mr Kurisunkal removed the cement block, tumours and replaced with new cement and bone graft. The recovery was six weeks on crutches as before. Histology confirmed recurrent GCT.

It is now October 23 and I have just reached a milestone in my journey having my first all clear three-month check. I cried with relief at the news.  I am still experiencing some pain but will be having further physiotherapy to help.

I am overwhelmed by how many amazing, compassionate, and hardworking people have been part of my journey. My family and I are truly grateful to Professor Jeys, Mr Kurisunkal, the whole oncology team and all the nursing staff for their expertise to get us through this tough time in our lives. With their support and that of my family and friends, I am almost back to full fitness and feeling positive for the future.

The ROH is going to be part our lives going forward.  We are pleased to support the Royal Orthopaedic Charity (ROC) with a monthly donation as a gesture of our gratitude. We hope that the money can go toward making the experience of other patients as good as ours”

Sarah is a long term donor for Royal Orthopaedic Charity and has donated over £500 over to the Charity to support patient wellbeing projects across  the hospital. We are so grateful to Sarah for both her ongoing support as well as sharing her story with us.

If you would like to share your story, contact the Charity team on ROC@nhs.net.

Quick links

Fundraisers support oncology family room.

Fundraisers Victoria, Alex, Andy, James, Abi & Poppy, have been fundraising to support The Royal Orthopaedic Hospital Ward 3 Family room, which offers a safe space for families, to convene during an oncology stay. Ward 3 is currently known as the oncology ward at The Royal Orthopaedic Hospital and often means patients stay for some time, both pre and post-surgery. The ward supports biopsies, complex surgery and amputation surgery, meaning a range of care is provided and needed within this space.

Victoria contacted the Trust after the passing of her mother this summer. Both her and her family wanted to commemorate the care she received at the hospital and give back to the ward where she stayed before her passing.

“Our courageous Mum Jacquie lost her battle with cancer on Tuesday 5th September 2023. Mum had surgery at the Royal Orthopaedic Hospital as part of her treatment. Mum never made it home, and remained in their care for several weeks.

The care and love Mum received from all the staff at ROH was of great comfort to us. In Mum‘s memory instead of flowers at her service, we asked for donations for the family room on Ward 3 at the ROH. This place was a sanctuary for us, where we could go and have a peaceful moment.

We noticed whilst in there that the room could do with some more computer games/board games/ craft activities and toys. The funds we raise will buy these items for the family room, so other families can have sanctuary and also entertain their little ones when supporting a loved one receiving care” Victoria

Victoria and her family raised over £900 through their Crowdfunding page earlier this year. These funds were used to purchase items for the family room for families to enjoy within Ward 3 (oncology ward).

Items include but are not limited to:

• Board games
• Games and colouring books for items for younger siblings to make use of
• Interactive games that can be played by all ages.

We cannot thank Victoria and her family enough for their generosity. This will make a difference to many people’s hospital experience, not only for the patient on the ward but for the family who visit them for the days or weeks they stay with us.

“Ward 3 are very thankful for these kind donations, we are sure they will provide a source of entertainment and/or distraction for all our patients and relatives that need to use our day room for either a quiet space or for families to spend time together whilst their relative is an inpatient” Natalie – Ward 3 Ward Manager

If you would like to fundraise in memory just like Victoria, contact the Charity team on roc@nhs.net or 0121 685 4379 and we will ensure you and your family are supported throughout the fundraising process.

Quick links

Art for Health – First round complete

The Royal Orthopaedic Hospital (ROH) completed its first round of Art for Health workshops this year, funded by Royal Orthopaedic Charity (ROC) , set up to support chronic pain patients in managing their conditions.  

Liza Tharakan submitted an application for funds to the Charity as part of our ‘poster competition 2022’ to help give extra support to chronic pain patients at ROH. The winning poster highlighted the benefits to patients of art sessions which help distract patients from the pain they are experiencing. The public, who voted in the competition as well as the Charity Trustees, were overjoyed by the poster and jumped at the opportunity to be involved in the organisation of it. 

Workshops were introduced by Liza Tharakan, Pain Medicine and Anaesthesia Consultant and Chronic Pain Service Lead at the Royal Orthopaedic Hospital.  Liza is a keen advocate for the Charity and has worked with us on other projects to support patients at the hospital. 

Liza said: “Chronic pain affects quality of life for patients – they can feel isolated, lack confidence and develop anxiety. As there is no definitive cure for chronic pain, we focus on management as pain specialists. 

“Many of our patients have restricted movement due to their conditions, and some are house bound. These workshops provide patients the opportunity to engage in creative activities that help them recover faster, manage their long-term conditions and experience a better quality of life. It’s been wonderful to see our patients relax during the workshops and many share that they forget their pain while they are here.” 

During the sessions, patients were able to access a range of art therapies including singing, making pinch pots, and painting still life. The sessions encouraged patients to try their hands at different types of art and created the opportunity to speak to others also managing similar conditions.       

Usual treatments for pain management include pain modulation with medications, which can leave patients with side effects. While medication, alongside injections and physiotherapy can help, they are limited in what they can offer patients. By participating in creative art, especially in group sessions, patients can learn distraction from constant pain, reduce social disconnection, and in some cases prevent or treat substance use disorder. 

This is one of the many projects funded by ROC throughout 2023 which give enhanced support to patients. To find out more about how the public’s donations, support the hospital visit: 

 https://rohcharity.org/ourwork/how-your-support-helps/  

Quick links

Supporting those in financial hardship

The Royal Orthopaedic Charity (ROC) launched a Hardship Fund in spring 2023 to support both staff and patients experiencing urgent financial hardship, offering one-off grants of up to £500.

The Royal Orthopaedic Hospital has an incredible reputation for providing the very best care to patients. The Trust consistently scores among the highest for patient satisfaction, and ROC believe this is due to putting patients and staff at the heart of what we do. ROC believe that if our team is thriving, they will deliver the best care to our patients.

ROC were pleased to create and implement such a meaningful initiative to give immediate and urgent support to ROH patients nationwide, as well as colleagues who live closer to Birmingham.

Since the launch of this initiative, over £6,000 has been awarded to both staff and patients to support with food expenses, household bills, travel, accommodation and basic needs.

Each application is evaluated by panellists from across the Trust, all who are unaware of the applicants’ personal details.

ROC is committed to supporting those in need, beyond providing the immediate financial assistance. Upon receiving each application and while the application is under review, the Charity provide a cost-of-living booklet to help applicants navigate their financial challenges. Furthermore, regardless of the application’s outcome, the Charity ensure that applicants receive additional support tailored to their specific circumstances. This might include information on anything from free children’s activities to contacts details of organisations who can support, to Citizens Advice. ROC’s goal is to provide  sustainable and meaningful support to everyone they assist.

In light of this, the Charity are thrilled to share that the ROH has been selected as a finalist for the NOA Excellence in Orthopaedics Awards 2023 in the Workforce Retention Initiative category for ‘Financial wellbeing initiatives’.

This is one of the many initiatives ROC are proud to be running to give extra support to both staff and patients throughout this time.

To find out more about this initiative or to make an application, email roc@nhs.net .

Quick links

In July fundraisers Phill, Charlotte, and Georgia fearlessly took on the zipwire challenge at Midland Metropolitan University Hospital.

Their courageous efforts paid off, as they collectively raised £800 in support of ROC. This was the first zip wire event ROC have been involved in and we were super proud of both their fundraising efforts and their fearlessness!