Since the start of this year we have been dealing with a recurrence of the mucosal melanoma - having reached NED (no evidence of disease) last October, for a month, after 18 months of treatments.
This led to a surgery, after which I got more closely involved, started driving him to appointments, asking work for flexibility.
Since then things have gone further downhill. The surgery didn't get clear margins - so he did re-radiation to clear the growing tumours in head + neck. While dealing with those it was spreading in bowel and spine and bone ....
Then he got an infection, or three, and was put back on track after a week in hospital receiving fluids and anti-everythings.
Now we are playing "whack-a-mole" with radiotherapy to contain the largest tumours on torso, all the while spotting more starting.
The consultant is perpetually upbeat - and my husband doesn't want to hear any bad news, so doesn't complain and doesn't ask - but what I see are treatments failing.
Every extra bag of fluid/potassium/iron is another sign to me that this is not 'coming under control'. The fact that my rock climbing/mountain biking husband has not been out for a walk around the block in two weeks says to me all is not well.
So it is the elephant in the room - we go to appointments almost every day for radiotherapy, scans, immunotherapy, see dietitians about his weight and advanced care nurses about his pain/discomforts - when will a professional tell my husband this is not going well? when can we stop chasing a cure that we knew from the start doesn't exist yet?
More than anything I just want to know what to prepare for - will we remain in this place for years, or should I be on red-alert for some sudden deterioration? Can I leave him home with just a teenage son to check on his Dad, or would a deterioration require someone with a car or first-aid skills to be on hand?
