We left the hospital grounds and went for coffee at a nearby store. We talked things through (as we always do) and I said that I'd support him on whatever decision he made; whether he chose to challenge this or just accept this is how it was and to therefore go back and start his treatment. There were tears...lots of tears for both of us. I married a fighter! He rang the consultant and advised that he wouldn't be having his first treatment today as we were going to challenge this in order to get back on the trial. What happened next seems bizarre as I recall standing in Tesco's carpark phoning P.A.L.S. at the hospital where the scan was performed. I advised that I wanted to make a complaint against their PET CT department. Within 20 mins I'd spoken to the manager of the department explaining what had happened and the impact this was to have on my husband's healthcare. I'll not bore you with anymore of the intricate details, suffice to say that numerous calls were made within the NHS and a rescan was scheduled for the next day.
I should explain at this point that my husband (like many people) gets claustrophobic, so the decision to pursue the clinical trial option essentially meant he'd have to go through the distress of another scan. I'm so proud of him for doing that! So having had two scans in the same week (Monday and Friday) we now had to wait until the following Thursday to find out if we'd done enough to get back on the trial. [I keep saying we because we're a team and do everything together!]
Thursday 7th July: Well, the verdict was in...my darling was back on the trial! The clinical trial nurse gave us the news whilst we sat waiting for his blood test. The nurse congratulated us: "Well done you for pushing this through. Once the clinical trial team said no to our consultant there's nothing further he could do, so this is all down to you for pushing! We're back on track and I've triple checked with the clinical trial team that you are definitely on and they have confirmed! So you start your first chemotherapy today!"
We were of course thrilled and when we saw the consultant later that morning he confirmed we were back on track; but he had more bad news for us! The scan had shown that the cancer was more progressive than previous scans and tests had; it was in his bones too! This meant that at best he was now at stage 4a of the disease..yet another blow, but at least we had the full picture! The treatment would be the same but it may be that part way through treatment they would switch to the more aggressive chemo drugs. So now knowing all the facts we could proceed!
