Hello - my name is Liz and I've never posted here before though I have been scanning the site for months. I wanted to share a couple of ideas and see if others might feel the same.
I find I have to open this site extremely gingerly. Whist in treatment I do find scary stories of all the things that have gone wrong for others quite distressing. It can put scenarios into your head that you have never imagined and, once you have read them, you cannot un-know them. This sounds extremely selfish I know but I'm just being honest. I think I would feel differently about trying to share my experiences to help others if I were at the end of treatment/in remission.
However, I am interested to follow developments in the field and to learn of opportunities to support Ovacome/cancer patients/contribute to getting the patient voice heard etc.
So I just have an idea for Ovacome. Might the site work better if there were separate fora for news/developments and for people's personal stories? Do other people feel they tread the same minefield?
The other idea relates to patient literature. I wish there were sources of information which were pitched at a level somewhere in between patient leaflets (virtually no information) and academic papers (largely unintelligible). I can understand that many people absolutely would not want to know in detail about the drugs they are taking. But actually as someone who was fantastically healthy, very careful about diet and reluctant to even pop a paracetamol unless in dire agony, I would like to understand more about the drugs going into my body. Why does taking a metal (platinum) work on an organic body? What is the mechanism by which it attacks dividing cells? Why do side effects occur? What is going on in the body to create them? And maybe occasional updates on research: what are the key areas under investigation? What is the timescale for reporting on trials? Are there interim findings. Again: pitched at this mid-way level.
Has anyone found more detailed information which was helpful? Do other people feel this is a gap worth filling?