Page 284 - She's One Crazy Lady!

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Background Material
I’ve mentioned before that in the early days of Crazy Hats, time spent doing charity work was my ‘therapy’.
All the time I was learning and everything I did in relation to cancer work, assured me that there was most definitely a need to get the word ‘cancer’ out there in a way that wouldn’t frighten people, to let sufferers know they were not on their own and that it was OK – that it was healthy to talk about cancer. I had been on the Cancer Patient’s Focus group at KGH for a few months and I was also on their Cancer Management Team where my role was to feed back from the Focus Group on issues such as continuity of care; patient’s notes; the timings of follow-up appointments when a patient was under one or more hospitals and ‘parking’ – the latter always an item on the agenda! It was all very relevant and I felt strongly that this was one way patients could have a voice, should have a voice – and be listened to. Such a move to have patients present in meetings, asking questions and having a voice may, I felt, have aggrieved a few of the medical staff but times were changing; this was a new Government initiative.
I persevered and was invited to join the Strategic Management Group that met at Leicester and served a much wider area and later, after being interviewed, was offered a job with them – for four hours a week! They apparently loved it when, on interview, I asked if I got a lunch hour! I was never to officially take up this position as my contract with the LEA was still open but I continued on a voluntary basis, knowing that four hours in any week was, quite simply a joke – one meeting alone taking up to two to three hours, plus time to write up the key points for the other meetings, time spent travelling... it was a good experience though.
One aspect that I thoroughly enjoyed were The Cancer Voices Conferences I attended. These really enabled the patient to open up and discuss all kinds of issues. When I was at them I always thought that these kind of gatherings of cancer patients should be more widespread and available to all – they certainly taught me so much and set my mind to thinking that we had to get something like this going in Northamp- tonshire.
I digress again here to tell you more about Michele Petrone – the professional artist I met at the first Conference. At thirty years old Michele was diagnosed with Hodgkin’s disease, a cancer of the lymph glands, for which he received extensive treatment. Being in isolation for a long time he decided to record his illness through his paintings and put on an exhibition called ‘Night and Day’ which attracted much attention, especially from the medical sectors.
Quote:
“Between night and day... as time goes by, night follows day, day follows night – a natural cycle without a beginning, without an end and without gaps. Life’s cycle continues without interruption, or at least it should do. Suddenly, illness arrives, uninvited, unexplained. I found
ost definitely a need to get the word ‘cancer’ out there in a way that wouldn’t
frighten peop”
le.
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