Caroline

Caroline was diagnosed with follicular lymphoma in 2006, just as she turned 40. Despite how advanced her lymphoma was, Caroline has been in remission for 13 years and says she can’t quite believe it. She is sharing her story as part of our 2019 Blood Cancer Awareness Month campaign.

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‘I had been feeling unwell with a mild pain in my abdomen which wouldn’t go away. My doctor thought it could be irritable bowel syndrome and suggested some medication. But things got worse.

I was eventually referred to haematology, although I didn’t have any classic lymphoma symptoms – night sweats, itchy skin, unexpected weight loss, lumps in my neck, armpit or groin. I had an ultrasound scan and a needle biopsy through my spine using a CT scan to ensure the sample was being taken from the right place. I then needed a bone marrow biopsy and, as the needle biopsy had been painful, I asked for sedation.

In February 2006 I was diagnosed with follicular lymphoma, a type of B-cell low-grade non-Hodgkin lymphoma. I was told I had large tumours around my aorta, above and below my diaphragm, and the lymphoma had also spread to my bone marrow, meaning I was stage 4.

I’d just turned 40 and had 2 young sons. Max was 8 and Harvey was 5 at the time. Sadly there has been a lot of cancer in our family, so despite how young they were, I knew my children would have some understanding. I didn’t want them to overhear hushed conversations, but wanted to be open with them and let them ask me any questions they wanted

My treatment was R-CHOP chemotherapy and I chose to be treated at Lewisham Hospital where I work as a physiotherapist. I really wanted to continue working and thought I could fit appointments around breaks. The first time they gave me rituximab (an antibody – the ‘R’ in R-CHOP) they started with a small dose to check I didn’t have an adverse reaction. Then the dose was progressively increased, doubled over several hours. The 3rd dose sent me into anaphylactic shock. I felt my throat closing up and the room was spinning, so I pressed the emergency buzzer. The symptoms were swiftly reversed with an injection, but it was frightening.

I contacted Lymphoma Action and found them enormously helpful and calming. I was able to talk about things that I didn’t want to talk to my doctor about. It made me realise the importance of the objective, accurate information that charities like Lymphoma Action produce. I was also put in contact with someone who had been through a similar experience through the peer-support Buddy Service, which was both helpful and reassuring. I now volunteer as a buddy myself, which is important to me - I want to be able to give others hope and support. People often say they feel much better when they’ve had chance to talk things through.

On 16 August 2006, a PET scan revealed that I was in complete remission. However, my doctor suggested carrying out a ‘rainy day harvest’ in case I needed to have an autologous stem cell transplant (using my own stem cells) in the future. I struggled with fatigue for about a year after treatment and at times it could be overwhelming. I found myself trying various things to assist my recovery such as relaxation and meditation, green tea and cutting out caffeine, various vitamin supplements and eating organic. I don’t know whether these things helped, but it made me feel like I was doing something active. I also joined a local choir, which I found very therapeutic.

I noticed my attitude to things changed. In the past I may have passed a restaurant and thought it might be nice to go there sometime – now I book it. I dress up far more, and don’t keep clothes, china or glass for ‘best’. We’ve also done far more travelling than ever before, and I grab every opportunity to have “bucket list” moments. 

My last chemotherapy was 13 years ago and check-ups are now annual. But I never quite feel that I can relax 100% health-wise. I suppose if you have breast cancer, you know where to check for lumps, but with lymphoma I am aware it can appear almost anywhere, which makes any strange unexplained pain or symptom potentially worrying. I wonder if there comes a time when you don’t worry about aches or pains? I suspect not.

In 2012 Lewisham and Greenwich NHS Trust was approached by the BBC as 1 of 4 workplaces forming choirs to compete in the TV series The Choir: Sing While You Work with Gareth Malone. I have a real interest in music and was in a punk band years ago on lead vocals, bass guitar and violin. So when staff were invited to audition, I was really keen to get involved. The audition was intense in front of Gareth Malone, the full camera crew and others waiting for their audition. I was thrilled to be 1 of the 30 staff chosen. 

It was a really exciting time, and in 2013, a year after the programme went out, Lewisham and Greenwich NHS Trust produced a single - a mash-up of Fix You by Coldplay and Bridge Over Troubled Waters by Simon and Garfunkel, which was used as the soundtrack to a video of us caring for patients. A junior doctor had the idea of getting the NHS to Christmas number 1, to highlight all the great positive things that happen in the NHS every day. She started promoting our single on social media and got a big campaign going. Chris Evans invited us onto his Radio 2 programme just before Christmas and we sang the single live, and then, to our amazement, Justin Bieber – who was heading for the number 1 spot – asked his 85 million Twitter fans to buy our charity single! 

We achieved the 2015 Christmas number 1 UK single. This was followed by a record deal and an album entitled Something Inside So Strong. This was released just before Glastonbury, and to our astonishment, we were invited to perform there; an absolute once-in-a-lifetime, top of my bucket list experience. We were also invited to sing at the opening of the FA Cup Final, at Gay Pride and at York Minster.

As I turned 50, I reflected on how my life had been turned upside down ten years before and I feel that in many ways surviving cancer has been life enhancing. I have now been lymphoma free for 13 years and have done things I could barely have dreamed of doing before I was diagnosed. I realise how getting older really is a privilege, and I am so grateful for being able to look forward to the next stage in my life.'

Find out more about Blood Cancer Awareness Month and how you can get involved