Well we're on to Plan D subset 53j now it appears. Might have changed again on Monday of course. Certainly no possibility of boredom in this household and my OH's nostril hairs are now long enough to plait. Lord knows when we'll get back to his grooming routine...
After the heady jollifications of my last post things started to go downhill again.
When the MRI showed that he didn't have SCC, everyone breathed such a sigh of relief that no-one thought to do anything about the inflammation so that continued to get worse. Ditto the bone pain and weakness which spread from the back across the whole pelvis and groin. That led to various out-of-hours panic calls last weekend and then another call to the Oncologist to ask what the hell was going on / not going on. And that led to us going in for a lumbar scan and that led to a radiotherapy appointment to try to deal with the misaligned vertebrae since the bones are too fragile to operate on.
That night he was doubled up in agony...we poured tons of morphine down him to no avail so phoned O-O-H for advice. They wanted us to go to A&E. Needless to say he didn't want to! Tried to sleep (fat chance) and phoned O-O-H at 3.00 and eventually the doctor came out at 5.30 and gave him an injection of slow-release pain killer which thankfully allowed him to get to sleep.
Had the RT the next afternoon but they forgot to give him a pre-dose of anti-sickness so he started retching up immediately after. By the time we got a prescription from the nurse the hospital pharmacy was shut and we couldn't find a pharmacy anywhere that had the anti-sickness drug she had prescribed. So we were tearing round in the rush-hour with him being thoroughly sick in to one of those grey cardboard sick-bowls and me cutting people up and switching lanes and getting pinker and crosser - a female Jeremy Clarkson. In the end we phoned the hospital and they brought the pharmacist back in from home and we drove back to get the b****y tablets. There must be an easier way.
Since then he's felt rubbish. Bone pain is ok but the morphine and steroids are making him confused and low and tired and he still feels sick. Basically he's been feeling rubbish in one way or another for 15 months, with very little let-up. Throughout it all he's continuing to be so courageous but right now it feels like he's running out of hope.
And the Radium treatment is off the cards for the moment - I think they are going to try the Abi/Enzo hormone route to try to strengthen the bones. But still no progress on dealing with the sickness which is a constant companion.
As Julie put it - this disease is a head clucker.
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