My husband mad metastatic melanoma. All treatments have failed. It’s been 4 years on a horrific rollercoaster. Things get better than 10x worse. He’s on palliative care now. Bed at home. Just had 3 blood transfusions in 3 days due to bleeding. He still eats and drinks now as much as he used too but he pushes it. He does it for our babies.
I don’t know who I’m meant to call for help when it’s needed or what to do. When he had his first bowel bleed Wednesday I called the palliative nurses, 5 hours later they called back as said speak to gp. GP came out said well just take care transfusion is tomorrow.
called again yesterday he was poorly lots of things. Ended up going to hospital. Another transition and antibiotics as a precaution. Palliative called his mum his sister and him. No called answered. My number was given for the call back, but no they called everyone but me again 6 hours later.
is this the norm, to be alone, just get on with it, no one cares or wants to do anything like they e written him off. Oncology consultant said not too much growth, your doing ok, keep it up. Palliative come out every 2 weeks to update driver paperwork and DN once a week to replace the driver needle. I was trained by them to do the meds.
I know in my heart that he’s worse than the doctors say. He barely moves, asleep 20 hours day, everything hurts regardless of the meds.that along with bowel bleeds and the struggle to cross from dream to reality, like I mean literally talking rubbish.
is it like this, are we just on our own. The patient, my husband, written off like ah well just get on with it,
