September is Blood Cancer awareness month and we want to highlight the importance of being aware of the signs and understanding that early diagnosis is vital. Around 3,500 people in London are diagnosed each year with some form of blood cancer, and there are more than 22,000 people living with a blood cancer in London. 65% of people with a diagnosis of Non-Hodgkin Lymphoma, the most common form of blood cancer survive at least five years after diagnosis.
Daphne Earl, patient partner on the pan London Cancer Patient Advisory Group and pan London Personalised Cancer Care Partnership Board, shares her journey with Blood Cancer, from diagnosis to treatment and the work she now does to support those living with or affected by Blood Cancer.
It was in October 2007 that I first noticed a lump in my upper thigh, although it was small and didn’t hurt as such, I just knew something wasn’t quite right and I had been losing feeling in my left foot every now and then. I have a family history of blood cancer, with my father having had Leukaemia and my son, who died from Non-Hodgkin’s Lymphoma at the age of 6, so straight away I was quite concerned.
I made an appointment to see my GP about the lump and loss of feeling I had been experiencing, I also mentioned my family history and was referred for a routine non urgent ultrasound. Around two weeks later, I went back to the same GP as the lump was getting bigger, I was getting more side effects and was still waiting to receive the referral appointment. A week after, I made my third visit to the same GP as I had decided to request a private referral for a scan. The GP was against this and very confident that my fears were unfounded, despite my family history -she did however give me the number for the referral.
I followed up the referral immediately and the clerk was very responsive in booking an appointment for me. During that appointment, within minutes of looking at the lump, the radiologist telephoned my GP practice to make an urgent appointment for the next morning to refer me to the consultant Haematologist. From this point, things moved fairly quickly; I had several scans, an endoscopy and a number of biopsies (including bone marrow) all of these brought the memories of both my father’s and son’s experiences to the forefront.
Soon after, it was confirmed as cancer but they needed to determine what stage it was at. After more tests, in February 2008, five months after finding the lump, I had been diagnosed with Stage 1 Non-Hodgkin’s Follicular Lymphoma.
Almost immediately I started a three week course of radiotherapy, which worked well in treating the cancer – I was very lucky. I did lose some feeling in my foot and leg during the treatment, but took a lot of comfort in aqua therapy and gentle sessions in the gym. These were also so important for my mental health and really helped me to focus on other things and not solely my diagnosis.
In 2008, I was in remission and so far, ten years on, I have not had a reoccurrence; I continue to have yearly check-ups to make sure that this is still the case. Reflecting on my journey, I know that I was lucky to have been diagnosed early. I think that the hardest part of the journey for me was the psychological aspect, resurfacing the memories of what happened to my father and also to my son.
During one of my hospital outpatient appointments, sitting in the waiting room I saw a flyer for a support group. I went along to the next meeting and it was brilliant, as a psychologist by background I know how important it is to voice and reflect on what you’re feeling and experiencing. Although I had tremendous support from my family, a Cancer diagnosis is isolating and having people who are experiencing the same feelings and emotions was really transformative and helped me a great deal.
I still attend the monthly group support sessions and have also taken on a co-facilitating role. I find it emotionally satisfying to use my psychological training as well as my own cancer experiences as a patient and carer to support others. Sitting with them, whilst they receive treatment as well as visiting them on the wards reminds me in a positive way how much blood cancer treatments are improving – but there is still a way to go.
For me, early diagnosis was key and I really hope that knowledge and understanding of blood cancer continues to improve, so that more people get diagnosed early and can have positive outcomes.
For more information about the work that TCST are doing around early diagnosis and living with & beyond cancer, contact firstname.lastname@example.org or on for further information Blood Cancer visit the BloodWise website.