Ann Cartmell, R.N. -- Cumbria, UK
Ryan and I met to discuss the possible effects of his wife's diagnosis of having further metastatic disease.
When Susan was diagnosed with breast cancer 8 years ago, she and Ryan had just become parents 3 months earlier to Jessica, their beautiful and longed-for baby girl. In their early 30s, the couple lived an ideal life. They were a professional couple who worked hard in very well paid jobs and had promising careers in front of them. A large new home, busy social life and weekends away kept them busy.
Susan was already known to me when she was diagnosed with breast cancer as I had met her when she and her mum attended clinic with her grandmother who was diagnosed with breast cancer.
Susan’s treatment included mastectomy and axillary node clearance with an immediate latissimus dorsi reconstruction. During the immediate weeks following her surgery, Susan mentioned she had suffered from a lower back ache intermittently during her pregnancy and this was still ongoing. A bone scan revealed bone metastases and a liver ultrasound scan revealed liver metastases.
The couple and their families were understandably devastated and struggled to cope with the news. Susan also confided that she coped with stress in her life by using obsessional cleaning rituals, which involved cleansing herself, her home, Ryan and Jessica. Susan was very specific with regards to which healthcare professionals she preferred to have involved in her care, declining help from agencies such as Macmillan, and responded badly to changes in medication or appointments, becoming anxious regarding her results following routine investigations. Professionally a scientist, Susan could not accept that healthcare was not black and white. She found it hard to accept that parameters of results could have a normal range and treatment doses could be adjusted but still be therapeutic. Her treatment consisted of chemotherapy and endocrine treatment with bone strengthening drugs. As her treatment continued, she found support mainly from the consultant cancer nurse and myself, and gradually we were able to gain her trust.
Susan and Ryan tried to keep Jessica’s life as normal as possible and confided in few people about the extent of her disease, preferring to keep their situation private. Susan struggled with the psychosexual aspects of changes to her body image and, despite additional plastic surgery, she felt unable to join in with her daughter when they went to the pool. During her course of chemotherapy, Susan used a scalp cooler to reduce the risk of hair loss although this had some effects – she was devastated by hair thinning and refused to venture out of her home.
Ryan coped well for the majority of the time but he adapted his life to become both mum and dad to Jessica and, working from home, he maintained his professional workload but admitted to feeling under considerable pressure. He often took Jessica for day trips alone to keep her life as normal as possible. However, this upset Susan as she felt he was preparing for when she was no longer alive. As he strived to manage, Susan felt her role was slipping away.
Susan's health stabilized; however, she retired from work on medical grounds and, for over 6 years, she used her free time to organize an annual fundraising event and to be a mum to Jessica. This time, however, was clouded by her obsessional behaviour and her worries over her health. Working together, the consultant nurse in oncology and myself discussed how we could meet Susan and Ryan's needs. We decided that regular appointments with the nurse consultant to evaluate symptoms would be arranged. A clear system of giving results was organized so that Susan would not wait unnecessarily.
Jessica was growing up and Susan found it difficult to accept her normal childhood wishes to go to friends’ houses and have friends over to stay. Once again her obsessional fear of germs tainted her ability to enjoy her daughter’s normal development.
We used the skills of a clinical psychologist on two occasions; however, Susan found this too stressful and was overwhelmed by trying to deal with changes to her obsessional behaviour, as well as her illness. Ryan became anxious too as his health wasn't good and he had undergone extensive spinal surgery. He had no outlet as all his time was spent with Susan and Jessica. On one occasion, he confided that he sits in the dark crying and watching Susan and Jessica sleeping, trying to imagine what life will be like without Susan.
Ryan met with me on several occasions and I referred him for counselling, which is ongoing. He has also taken advice on exercise and manages this weekly, which he finds particularly helpful. Support for Susan was also organized in other forms and she found benefit from Reiki, which is an alternative therapy used in the department. Using the relaxing properties of Reiki and spending time with me afterwards helped Susan explore the feelings she found so difficult.
Susan's disease progressed and she was diagnosed with brain metastases. Susan and her family were devastated and she was forced to stop driving, which isolated her and meant she had to rely on others for transport. Radiotherapy to her head meant hair loss and, once again, Susan was distraught. She hated wearing her wig. Steroids meant she put on weight and suffered from facial bloating. Monitoring her symptoms and helping her cope with side effects of medication was the role of the nurse consultant. Being present at these appointments meant a continuity of care and a flow of relative information and support.
This all brings me back to Ryan. He has come in today to talk about what will happen next, how he can prepare, what symptoms Susan may have and what will happen at the end. What support will he have, who will care for Susan and who will arrange it?
With all the focus on the patient, the needs of the family members who are struggling to cope can get neglected. However, care for families and carers is just as important as providing care to patients, and the families are the ones who will be left behind. Making those dark times a bit clearer, or brighter for my patients and their families, however difficult, is what makes nursing so special.
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