A recent Sunday discussion was our Breast Cancer Nurses, our BCN as we know them; our expectations and our experiences with them. For many people the BCN is the first person you talk to after hearing your diagnosis, they immediately become a major part of our lives, from a stranger to someone who knows our most intimate feelings in a matter of moments.
We heard that for one of our members the breast cancer nurse said the most important thing to them “It’s not your fault” – guilt is a very real and debilitating emotion and in those first hours and days after a diagnosis it’s natural to wonder what we did to deserve this, to blame ourselves for the trauma we are putting our loved ones through, for the prospect of the months of treatment ahead and the worry about what might happen. Having someone there who understands and tells us it’s not our fault is a huge relief and vital in those early days.
But our experiences weren’t all good, in fact they range from the wonderful to the diabolical and everything in between. From hugs and hand holding, to arranging appointments and giving factual information, they have so much to offer us through the minefield of diagnosis, treatment and beyond. For those who had a good experience this person was invaluable, many members said they wouldn’t have got through it all without their BCN. For those whose experience was less than positive there were stories of nurses who dismissed their fears, who didn’t return calls, who had “favourites” and would blatantly ignore some patients and spend time with others. Many of our members noted that the breast care nurses were overworked and stressed, they had large caseloads and just weren’t able to give each patient the time they needed. We heard from the perspective of a nurse who told us how it affects her emotionally and leaves her drained at home. It seems the support the BCNs receive is perhaps sadly lacking, it must be hard for them to be supportive when they are overworked and under-supported. It was clear from many of our experiences that the nurses didn’t always have time to provide the service they wanted to.
A point which came up several times was the lack of BCNs who specialise in supporting women with secondary breast cancer. Our private group has ladies with both primary and secondary diagnoses and for those with secondary breast cancer the majority had been left with no support. It takes a very special skill to provide the level of support needed for someone who has been given that news, their needs are different, as are their fears and worries. Members related feeling abandoned and alone, that their BCN simply seemed to walk away as soon as they heard. In some places determined campaigning has brought about the introduction of secondary breast cancer nurses, dedicated purely to providing a service for those ladies. It has been a long hard road, but where it has happened it has proved an immense support.
Some people found they were helped and had better relationships with the nurses in the chemotherapy unit, there were lots of stories of great relationships developing over the span of treatment. Perhaps because those were scheduled appointments and we are sitting for often long periods, able to chat and get to know each other.
The age and experience of the BCN also had effects on how the relationships work, some older nurses came across as knowledgeable and caring, others seemed jaded and to have lost their interest in the role. Younger BCNs were often bright and helpful, but perhaps didn’t have the knowledge to provide the answers we so desperately need, others made up for lack of experience with enthusiasm and a desire to help.
The range of our experiences showed us just how important a good breast cancer nurse is; someone who understands the physical and emotional effects, who can offer honest, factual information, but also be a shoulder to cry on or the giver of hugs, who doesn’t just hand out booklets, but really explains the treatments and options, who can liaise with the medical team and be an advocate for us, or just a friendly face. Cancer is a lonely place and it is invaluable to have someone there with us.
