After being told in Feb this year that one of my tumours had grown again, (I had 6 months of chemo in 2009) I was overjoyed to learn that I may be suitable for cyberknife as it seems that only this tumour is active. Being under one of the NHS London hospitals that were getting a cyberknife machine this summer, I felt that another 6 mnths of chemo to try and shrink it back down again first, would be worth it if it could be obliterated completely. then I started hearing all the rumblings about funding, and was very kindly sent lots of info by Lemongrove. Every time I saw the doctors at my monthly oncology appt, they seemed very excited about the new machine, and when I asked one of the registrars about the funding issue he sort of dismissed my fears and said that they could be very persuasive when it came to funding, and he didn't think it would be a problem. I was very sceptical about this, but thought I'd wait and ask the head man himself, the chief oncologist, when I next saw him. Well, that was Friday, so I brought the subject up. Apparently, the machine is now in place, and he has 11 patients who are suitable for treatment - and they have ALL been refused funding. Not only that, but if this carries on, and there are no patients using it, it will have to be 'mothballed'. This doctor doesn't have the best bedside manner, but he is a very, very good oncologist - and I could almost see the frustration coming out of the top of his head, like steam. I actually felt a bit sorry for him as it's clear that this situation is not what he, or any other doctor wants. I am in the fortunate position of having private healthcare, and when I told him this (have already told his registrars countless times - but they don't seem to talk to one another) he said that if they could get private patients using their machine first, at least it wouldn't have to be shut down, or 'mothballed'. And if my ins company won't cover it, then we'll cash in our ISA's - our savings.
When I was first diagnosed I was a private patient,, under an endocrinologist at King's College. But when I transferred to a different doctor (endocrinologist) and different hospital, he told me he wanted to treat me on the NHS, as he didn't want wrangles with insurance companies to get in the way of my treatment. He assured me that I would get the same treatment, and as far as the endocrinology side of things go, I have had fantastic treatment. But clearly, with oncology, it's a different kettle of fish, and I feel desperately sad for those people that would benefit from new drugs and treatments if they only had the means to pay for them. And I feel sorry for the wonderful cancer charity who apparently paid for this marvellous new machine only to see it standing idle.
Jeanie
