Baiba wanted to share her chondrosarcoma journey and the overwhelming support she has received in the face adversity.
I have always been very outgoing, active and a social butterfly. I loved going to the gym and swimming. It just goes to show that this can happen to absolutely anyone.
I had a pre-existing back problem, but this has never stopped me from working or doing things I wanted to do. In June 2017, at the age of 42-years-old, I had an accident at work and had a lot of pain in my left knee. I carried on working despite the pain and after a few weeks I decided to visit my GP, as the pain became unbearable. The doctor gave me painkillers and pain-relieving cream. After a few weeks, I visited the GP again and asked for an X-ray as I felt something wasn’t right.
I had an X-ray beginning of August and received the results on 15th August, showing some sclerotic areas in the distal femoral area. The GP referred me for an MRI and to an orthopaedic surgeon at Nottingham.
On 25th October 2017 I had a biopsy and the results showed a tumour of the cartilage in the bone which resembled a low-grade endrochondroma/chondrosarcoma.
In December 2017, a further MRI scan showed degenerative disease in 4 disks in my lower back. I continued working but in January 2018 I had to leave my job because of the pain.
It was from this point on that my worst nightmare started. I then started applying for government financial support and they decided that I was in actual fact fit for work. I encountered several issues with Nottingham Council when applying for a blue badge to enable easy parking access – they said that I didn’t have any walking difficulties. I asked to be 3 because my house stairs are very steep and I had fallen down them twice – they declined.
At this point my mental health has been affected quite badly. I started by having bad panic attacks. It was from this point that I realised I couldn’t cope by myself and I needed professional help. I now have a mental health support worker who I work really closely with.
In February 2018, I called the Royal Orthopaedic Hospital in Birmingham because the pain was getting worse and I was given an appointment with an orthopaedic surgeon. The doctor decided surgery was the best way forward and that I would have a left distal femoral endoprosthetic replacement.
On 25th July 2018, I had the surgery and I now have a massive bone implant. I thank my surgeon and his fantastic team who looked after me. A few weeks post-surgery, I had a phone call giving me my test results, revealing I had a Grade 1 chondrosarcoma.
My nightmare was not finished there. Six days after surgery, whilst I was still in my hospital bed, a letter came from Department for Work and Pensions saying that I was fit to work. I made another application for a Blue Badge but they continued to deny that I had any mobility issues. I rang about rehousing because I couldn’t manage to walk to my bedroom upstairs and I was denied help again. Thanks to Nottingham City Care Falls and Bone Health Service, I have been given equipment which has since made my life a lot easier.
In September 2018, I had my first appointment since my surgery. The leg that was operated on looked good but the CT scan showed a 4mm and 5mm nodules in my chest. Just the week after, I had hydrotherapy and physiotherapy at Birmingham, which I really enjoyed because of their fantastic team. December 2018 came and I had another check up appointment. Again my operative leg looked good but the CT chest showed the same sized spread of disease in my chest.
From November 2018 until April 2019 I had intensive leg physio 2-3 times weekly. I started to make huge progress and I am now slowly walking without crutches. Unfortunately this has had to stop because of intense back pain. I was unable to move out of bed, resulting in me asking my GP for another MRI. The scan showed osteoarthritis.
From February 2019 I had appointments with counsellors and a Cognitive Behavioural Therapist from Let’s Talk Wellbeing in Nottingham. I have been working really hard with my psychotherapist to improve things for myself, particularly focusing on my anxiety and acrophobia.
Throughout everything I have felt very lonely and hopeless and I am constantly seeking more information about my illness. I found the Bone Cancer Research Trust and I wrote an email to them about the challenges I have been facing and within the same day and same hour, Louise Kirby came back to me with such an emotional email. She supports me via email, with phone calls every single week, sometimes every day. She is such a wonderful Support Manager. She helped me to obtain a Macmillan Grant as I haven’t had any income for 14 months. She sent me a toilet card for easy access to facilities when I am out and about. She goes through my feelings with me when I feel close to having a panic attack and helps when I feel in pain. Thank you, Bone Cancer Research Trust, for your incredible support and thank you, Louise when you are with me.
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