My dad’s pleural mesothelioma was picked up very early—just a 1 cm nodule found on a routine scan because he used to smoke. At first the doctors called it a “mild” form, but the pathology soon revealed it was an aggressive subtype. We explored options, even hoped for a proton-beam trial, but he eventually started a double-drug immunotherapy. He managed only two cycles: side-effects were brutal, yet scans showed the tumour had stopped growing, so we felt cautiously hopeful.
That hope faded fast. Repeated infections landed him in A&E three times; altogether he spent about five months in hospital, in and out, chest drains and all. After the second-to-last admission he was discharged on co-amoxiclav, steroids and other meds. Within two weeks he was violently ill again. Back in A&E they found severe antibiotic toxicity—his liver was failing, he was jaundiced, and suddenly he needed round-the-clock care with hospice support. So instead of losing time to the cancer, we’re losing it to liver failure caused by a drug reaction.
It’s been a harsh reminder that quality of life can matter more than the extra months a treatment might buy.
Now to practicalities. Dad’s night-time coughing fits are distressing. Over-the-counter syrups barely touch it. Has anyone had success with stronger prescriptions? Would Oramorph help—both for the cough and for the obvious discomfort he’s in? (The liver damage has changed him so much.)
A hospice nurse visited today; we’ll find out what the doctor prescribes. But because we’re no longer seeing the oncologist, I’m worried the cough is being overlooked. Mum is reluctant to push for stronger drugs, and Dad hates sedatives, so I’d love to know what others have asked for and found effective.
Another frustration: I can’t piece together the timeline in his medical records. Was the antibiotic started in hospital or only after discharge? If it began on the ward, shouldn’t they have monitored liver function more closely—especially after immunotherapy? He was home just 2½ weeks before the liver failure was diagnosed, yet notes suggest the damage took about five weeks to develop. Without full access to his records we can only speculate. Mum doesn’t want me trawling through the NHS app, so we’re stuck with paperwork gaps.
The hospice team is sympathetic, and I hope they’ll agree that over-the-counter painkillers aren’t enough. He has a token 0.5 mg lorazepam for sleep—hardly adequate. Our parents’ generation can be stoic to a fault; persuading them to accept stronger palliative meds is proving a challenge.
Thanks for reading. Any advice—from cough remedies to getting clearer information—would really help.
