Two years seems to have gone by so fast. Ibrutinib has subtly but comprehensively changed the way that Husband has been living with the cancer. He is living a normal life. He feels good. Dare I say we’re almost getting used to that. Almost.
Our calendar revolves around six-weekly blood tests, prescriptions and getting Ibrutinib deliveries. That can be very frustrating. The process is a bit torturous – blood test, wait a few days, see consultant, consultant reviews blood test results, writes prescription, prescription goes to an NHS office miles away and waits to be printed – often for a surprisingly considerable number of days! The prescription is then sent to Sciensus, who process it (not at weekends, obviously – cancer takes weekends off…). The consultant allows a fortnight from prescription to medication delivery but it can take longer. We’ve had several anxious calls to Sciensus when the system has simply sent a text to cancel delivery. No-one ever seems to know why this happens but if you call up they can rearrange for a delivery a few days later or even send a delivery by courier if you’re running out. But you have to call up and effectively bang on the door to get noticed. It seems deeply unfair to have to fight so hard sometimes to get deliveries of such important medication but at least we get it. And it is pretty amazing stuff.
The blood numbers are stable. The proteins have been largely unchanged over the last six months – 9.5, 9.3, 9.5, 9.6 – and the haemoglobin is great at around 158. The consultant told us some time ago that they were more concerned by ‘the good numbers’ ie haemoglobin levels than the protein numbers – it’s their effect on ‘the good guys’ that matters rather than the numbers in themselves.
But all numbers are important to us – we can’t help it. We can see that things are stable and we’re grateful but we can also see that there is a very slight trend in the wrong direction – 9.3 became 9.5 and then 9.6. We’d really really love it if it would trend back down or stay put. Two years of stability is wonderful but we’re inevitably hoping for more. I guess we always will. It’s only human.
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