Hi all,
I'm just looking for advice and maybe a sounding board. My dad was diagnosed at the beginning of the year with stage 4 lung cancer after being told for 6 months he had just had long covid. He is having 3 weekly treatment of chemo and immunotherapy to try and keep it at bay but is on the palliative care pathway. The treatment has been somewhat successful in that we still have him with us and his tumours haven't grown or spread, but nor have they gotten smaller or any smaller ones disappeared.
My question is the level of support other people have received. My dad goes in for treatment by himself- my mum has to just drop him at the door and collect him when he's done because of covid, I've never even been to the unit as I've always had to sit in the car as only one person is allowed in to take him to the ward door. He's had a few hospital stays due to other complications and never once have anyone from his cancer unit been in touch to ask how he is or to follow up, but they always know he's been in hospital when he goes in for treatment- is this usual? When my uncle died of cancer a few years ago, his team was so involved and caring and this time round we just feel a little forgotten. My mum is on her knees with tiredness and worry and there doesn't seem to be anyone who even asks her if she's ok- she has to do all the calling book his bloods them with community nurses and then call again to find out results. She even had to chase when he had a scan because no one called with results for over 2 weeks, when she did get through she was told that there was no change so the results were there just no one seemed to care enough to call to tell them.
We try to stay positive but we know that at some point he will get sicker, but just really would like some reassurance that we won't have to do that part alone- does the support get better as the care becomes more palliative? We just had to buy a our own chair for the shower as they still consider dad fully mobile even though he isn't, but then no one has ever seen him at home, as no one has ever been out.
Please tell me that we've maybe haven't asked the right questions to access care, as right now I'm so worried about the coming months.
