Macmillan Cancer Support

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Patient P



Occular Melanoma

I travelled to Liverpool to be treated for my primary occular melanoma, cant fault them. However: there was very little information around for me I gained all my knowledge from the internet and forums. Hospital notes were lost from hospital to hospital. follow up care that is 6 monthly liver mri\’s were not with contrast and when changes to my liver were found I was left for nearly 8 weeks before I saw a surgeon and then deemed inoperable. The oncologist in the north was dismissive and would only offer me chemo for cutaneous melanoma even though it is useless in occular melanoma. Then came the fight to get referred to Southampton for a fighting chance to stabalize my tumours with their groundbreaking trials. All I wanted was the same right as every other patient with cancer but because mine is so rare I am denied many treatments and clinical trials. I have to fight the cancer as well as the NHS. I pay my taxes yet still have to travel to the other end of the country to get the   help that is out there. I can’t get an individual funding request because I cant provide any evidence, I cant provide the evidence because I cant afford the treatment……am I just expected to go away and die quietly? well I’m not and will carry on kicking up a fuss for me and to smooth the way for those coming after me!! Disappointed but not out yet!!

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