We had a great Xmas in the mountains at David and Jenny's place, then Boxing Day at Helen and Scott's place at Penrith, followed by a spectacular New Years Eve watching the fireworks at Jill and Alistairs place in Kirribilli. We came down to earth with a bang bigger than any firework on New Years Day! For a few days before, Alan had been a little unsteady on his feet and slightly confused. He woke up on New Year's Day with a headache and didn't feel great. I rang the oncology registrar at the hospital and they suggested I took him into emergency. Then the fun started.
He had almost every test under the sun and we went through a roller coaster of emotions after being told firstly that they would be giving us a palliative care contact as it looked like the tumour had come back already. That was after a scan and the fact that he was unsteady and confused. Then, a couple of hours later when blood tests came back, they said his sodium levels were extremely low which could in itself cause the walking and confusion problems! They put him on a steroid for the swelling on his brain and restricted fluid intake for the sodium problem and hey presto, as soon as the sodium went back to normal so did his walking etc.
They kept him in hospital until yesterday - one of the problems was that because it was over a holiday period, they were running with skeleton staff, and although the doctors on duty were doing their best, they are not specialists and therefore can only give you their opinion - we didn't like to listen to their opinions and we're happy to see one of our Neurology team. The chemotherapy oncologist ordered an MRI and said that in her opinion the swelling and associated tissue was caused by radiation damage which can take more than 6 months to show up - guess how long it's been since he had radiation? Anyway , to cut a long story short, she's put him on a different kind of chemotherapy, smaller does and more often, so 20 days per month instead of 5 days. She also sent a piece of tissue to be tested for a clinical trial which is starting in Sydney at the end of January so fingers crossed.
Then an appointment was arranged with our Neuro Surgeon for his opinion on the MRI - he was on the same lines as her - radiation damage - so for us another sigh of relief. They leave nothing to chance, however and we have a third opinion coming up on Thursday when we see our radiation oncologist followed by a PET scan next week. We are exhausted just thinking about it all.
Sorry to be so detailed about it all but I wanted to let everyone know without having to tell the tale over and over again!
Today we slept in and have had a pleasant quiet day after the turmoil of the past few days. We are looking forward to another quiet day tomorrow. It's Alan's birthday but we won't be going overboard with the celebrations, at least he won't be, he's not allowed any alcohol on this new medication so I'll just have to make up for it!!!
