July

It’s is becoming increasing apparent that actually, OM is not that rare once you have it! The only thing that makes it rare is the lack of knowledge about how to go about both diagnosing and then treating it. It’s been a while since I’ve written on here. Many reasons to be honest. Sometimes I literally just get bored of talking about my OM journey and also that I’ve been busy. I had a nervous return to work day last week as it was the first time back to CNN since my collapse at the Royal Wedding. Long enough has passed though and no one mentioned it, thank goodness. I actually had a lovely afternoon. Speaking with our presenters and guests for the specific programme who were all linked to government in some way, it was refreshing to know that they are all still surprised by the lack of research, funding and awareness behind these rare cancers. Surely as a collative of rare cancers- we become a larger group? Therefore worth investing research funds into?? How can my future be reliant on someone deciding whether it’s worth spending the money to find a cure? As I may have mentioned, a certain CEO of a worldwide pharma company point blankly stated, to my face, that it’s not financially viable to spend $billions to save a few hundred people when they can save millions of others with leas rare diseases and make more revenue. Last months biopsy results in and phew, breathe again until next months scans. The waiting seems to get easier, or maybe it’s just that the sun has been shining and that I’m busier and slightly more in control of my day to day living. I’ve learned to manage expectations of myself and with the help of my family, and the odd bollocking, curtailed some things and limited my functioning hours to suit my health and energy levels. The sight in my left eye is getting worse and I’m well aware when the fatigue takes hold. It’s a bit crap, but that’s how it is. The Gala prep has sprung into life! Wowzer- I never expected the response that we’ve received. The incredible donations from friends and colleagues have seriously brought me to tears on more than one occasion. And, it’s so exciting how things are coming together. I really do feel it’s a ‘smile and the world smiles with you’ kind of approach. ‘Give and ye shall receive!’ With 12 weeks to go, we are well ahead of target and have actually reached the point that OcuMel can start recruiting a specialist nurse already and that WILL make a difference. Only this week, myself and Jo, the director, have been supporting a lovely lady who’s had the worst news from one of her scans. Jo is incredible with the knowledge she has about trials and options to patients at stage 4. I, on the other hand, have loved being able to just ‘be there’ when this poor lady needed someone to talk to and listen. This has shown me the massive importance of the group that is OcuMelUk and how vital it is that we grow and become stronger in order to help and make a difference to people’s lives. One day, it could well be me needing that support.