On the plus side I attended a self-help group run by the specialist nurse. There as well as hearing other experiences of the exhaustion that had come over me, I met two women who have become MPN buddies. Living close to each other we now meet up on a regular basis and have those boring to others, but necessary to us conversations about symptoms, medication and how to deal with everything. One central conversation became reactions from our families and friends. More of that to come.
Eventually my platelet level steadied. Cause for celebration except I felt increasingly fragile until the day of my next clinic appointment when I embarrassed myself horribly by bursting into tears.
As I spluttered and tried to explain why I wasn’t coping well, the registrar, female, said the blessed words, ‘well you have had a lot to deal with recently.’
From that point I have to award the team 5 stars. Efficient from my first meeting with the consultant, their concern became evident and practical. Referred to the specialist nurse immediately with suggestions to see not only her but receive both holistic therapy and sessions with a clinical psychologist.
The necessity of safe spaces
When I left the clinic I felt acknowledged. This was deepened when I decided to visit the Maggie’s centre at the hospital. The setting for the self-help group meetings, I’d found it cheerful and welcoming so I decided to pay a visit while on site.
There I met one of the nurses who in a couple of sentences, like the registrar, ‘saw’ me. Saw my distress not merely at the diagnosis, unexpected as it was but how it had come about. She offered me the comfort of another safe space and her hug validated how I felt.
The elephant in the room had left its corner and decided to take centre stage.
If you haven't heard of Maggie's find out more here.