Week three: by guest blogger, Dr Phil. Throughout Childhood Cancer Awareness Month Dr Phil shares her weekly Doctor's Diary. This week, she looks at side effects.
4th September 2006
Our 13 year old son was diagnosed with acute lymphoblastic leukaemia during the school holidays so a few weeks into his chemotherapy the last thing on our mind was his schooling, we just wanted him to get better. However, he was just about to start year 10 and his GCSE’s. We received a phone call from the hospital school service advising home tuition could be arranged and set the process into motion. Our son was not expecting this as he was finding it hard enough coping with the illness, the treatment and the consequent numerous side effects. These included nausea, hair loss, constipation, numb finger tips, anxiety, insomnia and extreme tiredness.
The science teacher arrived at our house earlier than arranged; it was all too much, not only a total stranger but one who expected him to do school work when he was feeling unwell. However, we managed to make our introductions and the first session was just a chat over a cuppa. Our son was reassured and also advised if he felt too unwell he could cancel his lesson.
He was suffering total exhaustion unable to walk up the stairs without stopping a few times, reflected in the blood counts which had been hit by the grueling chemotherapy regime. It was time for another blood transfusion, which meant a long day in the oncology day bed ward.He was suffering total exhaustion unable to walk up the stairs without stopping a few times, reflected in the blood counts which had been hit by the grueling chemotherapy regime. It was time for another blood transfusion, which meant a long day in the oncology day bed ward.
Three months after diagnosis and he wanted to try and face his friends back at school for the first time. However, it was too much and he suffered a panic attack at the school entrance. He felt too self-conscious about his appearance; his hair was thin under the cap. Even having to wear a cap made him look different and feel out of place. His face was rounder due to the steroid therapy he needed which he hated and he told me that day he would “trade anything” not to have cancer. He was sobbing with frustration, feeling that he had let himself and us down in some way.
A month later he did go into school for a music lesson and really enjoyed it. His school friends were so accepting of his awful situation and wanted to reassure him. Afterwards he told me he could now imagine life returning to normal. A huge milestone passed and home tutoring was also going well in French, Math’s, Science and English.
He was admitted to hospital at the start of the month for an episode of septicaemia (blood poisoning) that presented with severe back pain and a high fever. I have never seen someone in so much pain requiring morphine analgesia.
It was very frightening how quickly the episode developed after a seemingly uneventful trip to MacDonald’s for breakfast. It resolved quickly on intravenous antibiotics.
I was taught how to give some of his chemotherapy at home which was nerve wracking, in addition nurses came to do blood counts and give treatment, so that we could cut down the number of hospital visits. We were definitely entering a phase of coping and could start to look positively to the future.
First full day back at school completed despite being terribly nervous. We are all so proud of him.
Children having treatment for cancer suffer physical and psychological side effects, which are well documented and can be expertly managed by the medical team.
However, the whole family also suffers a series of emotions, including denial (it can’t be happening to us), anger (why us? what did we do wrong?), depression (copious tears, poor appetite and lack of sleep) and then finally a phase of acceptance (we have to beat this). There are so many questions, not only about the treatment but also how will the family cope? There may be financial considerations and practical difficulties. There is lots of support on hand, not only from your doctors and nurses but also from counsellors, hospital teachers, hospital play therapists and social workers. They are aware of all the issues and will help the siblings too.
28 per cent of funds raised by Children with Cancer UK are spent on welfare projects, such as funding hospital equipment, new treatment units, financial assistance for families, hospice care, a home for parents to stay in whilst their child is in hospital and special days out.
Read more: Childhood Cancer Awareness Month | Patient stories | About childhood cancer | Side effects of treatment