In the spring I joined this forum when my husband got his cancer diagnosis. Initially only multiple large tumours in the liver were found, but after a biopsy the oncologists decided to label it CUP (unknown primary), with likely origin in the lung - despite no trace of tumours seen in the lung in several scans.
We had no choice but to go ahead with their suggestion of GemCarbo chemo. Stopped after two rounds, no success. Immunotherapy with Tecentriq for two rounds, but a devastating updatecame from oncologist after a scan at the end of August - blood test results getting worse and tumours growing -, so it was stopped as well.
No medical trials available, no further treatment available, less than three months to live - that was the message we got on 23 September. Basically "go home and die". Want ascites drained? "Oh no, we don't arrange that, talk to your GP."
Well, after struggling through a weekend and a GP appointment we managed to get my husband into hospital last Monday. By Thursday morning he had finally been moved from the Combined Asessment Unit into a ward and they started draining. Low sodium levels are now monitored by the doctors, results of a head CT scan still pending. During his time in hospital he has deteriorated a lot, barely able to speak, loss of balance, no appetite anymore, trouble concentrating. He even needs the nurse to help him dial a number on his mobile and is sure the doctor told him he has no more than two weeks left.
I am not allowed to visit: a rise of Covid-cases in our area has stopped all but "essential visits" to hospitals since early September. According to their website, exceptions are allowed for "patients during their last weeks"... well, if that doesn't appply to us, when will it apply??? Website also says that "virtual visits" can be arranged and hospitals can set up zoom calls. Nope, not possible, hospital doesn't have technology to support this. There isn't even a ward phone that they can take to patients' beds. So how do people cope in there if they did not bring a mobile in?
At the moment I incredibly angry. Angry at the hospital. Angry at all schoolchildren who run around at lunch times, people who can't get enough of socialising, people who say "we have to learn to live with the virus". Do people even realise what's happening at hospitals? Yesterday I emailed our MSP about the discrepancy between website wording and reality; maybe it will leave others in a better position.
But besides being angry I am just sad and scared that I won't be allowed to see my husband again before he dies at the hospital. Alone. Convinced everyone just lied to him.
