Helen Roe, R.N. - Cumbria, UK
I first contacted Jayne (pseudonym) after I was asked to oversee her treatment for adjuvant breast cancer. She had chosen to see an oncologist in another centre but receive her treatment locally to be near her family and not have to travel far if she wasn’t feeling well after her chemotherapy. At first, she seemed very quiet, but well informed regarding her cancer diagnosis, planned treatment and possible side effects.
We met each time she attended for chemotherapy and, over time, developed a rapport, discussing what she had been doing since we last met, and how she had been feeling about her diagnosis and the treatment. Importantly, we discussed how her family were coping – this included her husband and four children, all of whom were under five.
Often, I tried to imagine how she must be feeling and how someone would cope with what she was going through; the conversations she would be having with the children, especially when she lost her hair or felt sick, or just wanted to scream at someone. After all, she had a healthy lifestyle and found her breast lump herself shortly after her fourth child was born.
I think we developed a greater bond as she didn’t have a great support network within our hospital as a result of seeing an oncologist elsewhere and so, I became her key contact. Another reason was that during her second chemo, she showed me photos of a puppy they had just bought. This was around the time I had also got a puppy. This gave us something in common to discuss other than the chemotherapy and her family – something she said made her feel normal.
She completed her planned chemotherapy and radiotherapy, started hormone therapy and continued to have follow-up appointments with her oncologist. Occasionally, I would hear from her regarding long-term side effects or more everyday concerns she might have had. She very much wanted to get back to ‘normal family life’, but needed to know there was someone at the end of the phone line when she needed them – and I was that someone for her.
A few months after completing her chemotherapy, she rang me to say she has seen her own doctor and she was having a scan as she had some pain around her liver area. The next I heard was from her oncologist to say she had seen him and, unfortunately, she had developed liver metastases only a few months after completing adjuvant chemotherapy.
The biggest shock was that she had decided not to have further chemotherapy because she would rather enjoy the time she had with her family. She wanted them to remember doing things together rather than her feeling unwell during more chemotherapy. Even her oncologist found this difficult to understand as she may have responded to further chemotherapy and, potentially, lived for a longer period of time.
She was able to rationalize her decision and it was evident she had given it much thought. In a way, although I found it difficult to fully understand, it was her decision and my role was to support her with whatever she chose to do. I actually respected her for the decision she made and the reasons why. Some may say chemotherapy was the obvious choice – however, her opinion was that further chemotherapy would not alter the final outcome.
We met a number of times over the next year or so and I supported her in preparing for her death, discussing memory boxes for the children, and ensuring that her will and finances were all sorted. Even though it was not thought her death would be imminent, she needed to know everything was sorted out, as her husband would have the children (and dogs) to cope with. They planned a holiday to go and see her parents, as she said, to say goodbye while she was feeling well enough to travel and because the children had never been. She often said her parents lived in a third world country with poor healthcare and from the photos she showed me, it definitely was. She rang me to let me know they would be away for about a month and she would call after they returned.
The next I heard was about 5 months later from her Macmillan nurse to let me know she had died. She was adamant she didn’t want to be admitted to hospital, which was just like her.
I feel I had been privileged to meet her, and attempt to understand her rationale behind the decisions she made, even though I didn’t always understand or agree with them. I guess, at the end of the day, unless in the same situation faced with the same decisions, none of us know what choices we would make – but I felt honoured that she felt I was someone she could always contact, even when we hadn’t spoken for months.
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