Sunday, 14 October 2018

Weekly Discussion Summary ~ Lack of psychological support after diagnosis

"There is no guidance, no help, and crucially no psychological support. It feels as though we are thrown out of a plane with a parachute that we don't know how to open, with no instructions."

In our weekly discussion, timed to coincide with World Mental Health Day on 10th October 2018, we shared our experiences about the lack of psychological support after a diagnosis of primary or secondary breast cancer.

The psychological and emotional toll of a breast cancer diagnosis is a heavy one. It is a traumatic event that affects our mental health as well as our bodies. Few of us emerge psychologically unscathed, even when the diagnosis and treatment appears to have been successful. Our fear of recurrence (for women with primary breast cancer) or spread (for women with secondary breast cancer) is real.
At the end of our active treatment, we are told to get on and live our lives. Many of us don't know how to, we have forgotten. There is no guidance, no help, and crucially no psychological support. It feels as though we are thrown out of a plane with a parachute that we don't know how to open, with no instructions.

Some of us have been lucky enough to find counselling which helps us to process our experiences, others have attended a course that helps us with knowledge. We may find an on-line support group such as ours, where we can ask questions and most importantly, find others who are going through the same experiences. We learn from those who are emerging into their lives again, tentatively and often harbouring great sadness.

Those of us with secondary diagnoses described how psychological support seems even more sparse. Private counselling is an option that few of us can afford. Hospices, in some areas, can offer support but their resources are also stretched. The value of groups such as BRiC and others, some of which are specifically aimed at women with secondary breast cancer should not be underestimated.

We reported feeling cast adrift at the end of treatment. Some hospitals offer regular physical checks, others discharge patients at the end of treatment and provide annual mammograms only for a number of years, usually five. We are then back on the regular screening programme. Many of us were exhausted at the end of treatment, which can last many months, even years, and is gruelling. 

Yet we are expected to get back to normal, to pick up our jobs, our lives, as if nothing has happened. This just isn't possible in most cases. We talked of our isolation, our anxiety, our depression, having no-one to talk to as friends and family view us as cured; they can't understand the severe fatigue, the side effects of ongoing medication, the loss of self-confidence, the fear and vulnerability.

There is valuable support offered by Cancer Centres like Maggie's and the Haven but this is dependent on where we live and can feel like a postcode lottery. Some provide HOPE or Moving Forward courses, and some providing free counselling. These do have their place but are limited in scope. The courses tend to provide information about living a healthy lifestyle post cancer, and the counselling may be so focused on the cancer that the rest of our lives is ignored, whereas a holistic approach may be the most beneficial. The timing of the offerings is also crucial - some of us are ready to process the trauma sooner than others.

Why is the body treated so comprehensively while the mind is ignored? Why does the medical profession seem to believe that we are OK once active treatment has finished? Why is it that any help beyond the physical is provided by the voluntary sector or by charities? As Naz described, we show NORMAL reactions to a set of ABNORMAL effects following the trauma that is breast cancer, and these continue well beyond the treatment suite, perhaps for the rest of our lives.

The lack of effective psychological support following her breast cancer diagnosis led Naz to set up BRiC. Our group is a safe space where can express our fears, and support one another in a psychotherapeutic way. It is so important for us to know that we are not alone.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group please send us a private message via the public page

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