Following the diagnosis, I received a 'fast track' for the NHS sarcoma service but an appointment wasn't available for two weeks and was with a respiratory doctor rather than a surgeon. If I'd have stayed with the NHS I would have had the op done in Birmingham because that's where the thoracic sarcoma service is, despite a brilliant thoracic team in Leeds, closer to where I live.
I am very lucky that I have private health care through work, so on the Monday after diagnosis, I contacted them. Despite having a 'dedicated' cancer team, I found BUPA very unhelpful. When you have something like this, it's not common, so when you are informed you need to pick your surgeon, how do you know where to start? There are few surgeons with 'chondrsarcoma of the rib' on their online resumes and not many with thoracic surgery generally, so I felt as though it was a bit of a guessing game - how does a patient chose such a specilaist? I ended up emailling five surgeons to ask if they could do the surgery needed, and in the end whittled it down to one, based in London.When we first spoke with her, she asked me to look at a more local surgeon at a private clinic in Leeds, so we had a meeting with him mid-April. Although our original surgeon had my best interests at heart - for follow-up care and closeness to home - the Leeds surgeon couldn't answer any questions about how I would be affected, even down to whether I would be able to shower after the op. It felt as though he was only interested in the surgery itself and not the person. We carried on but then things took a turn - we had been told by the surgeon that we would need the surgery at hospital X because hospital Y did not have an ICU, however, when I received a date for surgery it was booked in at hospital Y. I'll admit that at this point I was upset - half of me didn't want to make a fuss, but it just didn't sit well with me that we had been told something very specific. I called up our original surgeon and asked to be picked back up by her team.
I've no doubt the local surgeon is brilliant at what he does, but you need to put your trust in the person carrying out what, to us, is major surgery. So the moral of the story is to stick to your guns - you have to feel comfortable and safe as a patient.
For note - following surgery at the London hospital, my first night was spent in their ICU. Not because I was high risk but because it was their standard procedure.
