Feeling abandoned

 

“It felt like everyone was so focussed on treating the cancer that nobody gave a thought to the life I’d be left with afterwards.”

Our members talked about lack of support and feelings of abandonment once our treatment ends.

We are expected to bounce back but there is very little psychological support available to help us find our way forward.

Coping with the shock and trauma from the day we are diagnosed often only manifests properly at the end of active treatment. It’s like a perfect storm. Treatment ends, our friends and family celebrate, our employers expect us back at work, but the reality is we are on the edge of completely falling apart. It can cause us to be completely numb and disconnected with ourselves - in danger of experiencing clinical depression.

There are limited options available; moving on groups, charities offering counselling, complementary therapies, etc. which is a start, but not enough. Firstly, we must be in the right frame of mind to seek out the places that can help us, which is not that easy and can be very overwhelming. Accessing help through the NHS is a postcode lottery, and if you’re lucky enough to qualify it can be months before any help is available.

“If cancer treatment is getting more sophisticated and giving women a chance to live longer, then there needs to be the support to help them live well; physically, mentally and emotionally.”

With a cancer diagnosis we are forced to face our own mortality while being put on a conveyor belt, where we come out the other end scarred for life and poisoned, in order to save us. Treatment is very contradictory and often difficult to reconcile in our heads.

“Our society does not arm us with the tools to be thrust into full mortality awareness and immediate identity destruction outside of an abusive setting.”

Covid added another complication to recovery. The complete isolation of lockdown denied us the return to normal, because normal simply did not exist. There were no groups available to attend, no networking classes, no activities such as swimming - we were barely even allowed to go for a walk. All very detrimental to our psychological and emotional wellbeing.

Having a secondary diagnosis makes us highly vulnerable. If women with secondary breast cancer are expected to live longer with medical advances, they need support to live their remaining time in the best way possible. For example, we have been told there is only one Secondary Breast Care Nurse in the whole of Wales. What chance do we have of being supported by a system that is so massively under-resourced and neglected?

Indeed, some feel so traumatised that they would consider refusing treatment if they were to receive another diagnosis in the future. How is that right? We are not asking for miracles. We face our reality head-on, every single day, with very little relief.

At BRiC we offer support to all but believe that everybody with a breast cancer diagnosis should have access to an NHS backed resource once they have finished treatment, they should not have to search for it. Immediate and ongoing psychological support is a major part of our recovery, we shouldn’t feel as though we have been set adrift into the unknown.