Ro Cartwright was diagnosed with cancer in 1968, aged eight. Now 63, she reflects on her experiences, including the difference in treatment and care seen today, and how more has come to be learnt about the long-term effects of children’s cancer.
I was diagnosed with Hodgkin lymphoma 55 years ago. Back in the 1960s, the diagnostic and treatment options were more limited, and after a biopsy of a lump on my neck and lots of blood tests, my parents were told I needed radiotherapy treatment. That, too, has changed a lot since then – my treatment involved lying very still in an enclosed capsule with lots of bags of lead piled up around me. The hospital didn’t have a paediatric facility and I don’t remember seeing any other children when I was being treated, only lots of elderly patients.
Finishing treatment
Thankfully, treatment was successful and after 10 years of annual follow-up checks I was fully discharged. I was told I needed to careful about my teeth, but other than that there was no mention of any long-term side effects, or what’s come to be known as ‘late effects’. Obviously, since then a lot more has been learnt about the late effects of radiotherapy treatment and I know that diagnostics and treatments have changed enormously since I was diagnosed, so most of the late effects I’ve experienced probably won’t be relevant to others.
I’ve had a number of skin cancers due to the radiotherapy, at the time I was treated, delivering a high dosage to the skin. These were basal cell carcinomas and have been removed by skin surgery, the first of which was 30 years ago and the most recent just a couple of months ago. I expect I’ll have more of these, so I monitor my skin carefully.
My treatment also caused mild damage to the top part of my lungs, which means I’m more breathless than most people, and impact to my carotid arteries and thyroid, which are being monitored. Overall, however, I’ve been very fortunate that these haven’t been too limiting.
Understanding more about the long-term impact of children's cancer
I first became aware of late effects about 20 years ago when I was invited by my GP to complete a questionnaire for the Long-Term Follow Up Study (a research project carried out the University of Birmingham). As part of this I received a newsletter and gradually began to piece together information about my cancer and its treatment, including more about long-term side effects it may have caused. This has been tricky at times because my childhood medical records have been destroyed, but I’ve managed to track down some limited summary information, so I do at least know my overall radiotherapy dose and number of fractions [it was divided into].
I’ve been told that childhood cancer survivors are now given much more information about their diagnosis and treatment. I can see this would be really helpful as some of the long-term effects I’ve experienced have involved other specialists who aren’t familiar with the details of my cancer or the treatments I’ve received.
Another area where times have changed is in discussion of the emotional impact of childhood cancer and support for the whole family in dealing with this. In the 1960s many people spoke of cancer in hushed tones and even within my family no one talked to me about my experiences.
Finding positives
I realise every individual will have their own challenges but overall, I’ve been very fortunate. My life’s active and fulfilling and my childhood cancer is only one strand of who I am.
I do sometimes wonder about who I would’ve been and what my life would’ve been like if I’d not had cancer but try not to dwell on that. Instead, I try to find positives if I can.
My love of reading, for example, stems from time spent in hospital and I know my childhood illness has motivated me to try to live healthily because I want to do everything I can to stay well. I’ve had a lifelong love of exercise and I love spending time outdoors, especially in the mountains. In childhood I was very keen on swimming, but nowadays my main interest is running. My ambition is to run the London Marathon one day!
I’m incredibly grateful to the NHS and all its amazing staff who treated me as a child and who have continued to support me as more has been learnt about late effects. It’s wonderful that so much more is now understood about this important aspect of life after cancer.
Create a better future for young people with cancer
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