@isaxx - I also haven't been on this thread as I've been trying to frame myself as in the recovery phase, so have been posting on the recovery thread. I actually came on specifically to see if you had posted about your lymphoedema, as I'm pondering what to do next and wondered where you were up to. I'm really sorry about the clinical trial - that's a really shit situation. I remember you saying you were basically letting it deteriorate in order to qualify. Obviously from a scientific pov, I completely understand they need a control group, but it's really rubbish for the people who find themselves in it.
I'm not in London so don't qualify for the LVA trial anyway, and am considering spending an inheritance to pay for it privately. I realise I am very lucky to be in the situation where I could pay for it. However, I am still struggling to actually push the button on going ahead. I have a provisional date booked, but have yet to part with the cash. It seems such a lot to spend when it's not life and death. I also had a regular clinic appointment this morning and my swelling has reduced since I've been using compression and swimming regularly - which makes it seem even less 'worth it'. But then if I don't do it, and it gets much worse, it will be too late. OTOH, I am at very high risk for recurrence of my cancer, so if I'm dead in 5 years, having it will have been a waste...all of these thoughts are very difficult to process.
In terms of talking to your insurer, could you use the argument that it's not really 'experimental' in that it's already available on the NHS in Wales?