Good evening everyone, sorry this is long.
Things have been going quite smoothly with my brothers treatment until yesterday. He got some encouraging news on Tuesday with his ten second telephone review, he continues to respond well to chemo. He mentioned to the oncologist that he’s having terrible trouble with his eyes and nose running constantly, the oncologist said he would speak to GP and get eye drops prescribed. He went to hospital for pre chemo bloods yesterday. At some point he mentioned that he had quite a sore mouth, no one seemed particularly bothered about it and he came home.
He later got a call telling him to come back to hospital so they could have a look. He was doing something and said no I’m not coming. He was then told “ well you have to because the doctor says” he dug his heels in and said I am not coming. The nurse than said well we can’t give you your treatment tomorrow. He says fair enough bye then. Today he has been issued with an ultimatum from his oncologist that went something like this…. If you don’t let us look at your mouth then you aren’t getting any more treatment! Of course this is his perception of the conversation which he has taken very badly, he feels like he is being treated like a child and has no faith in the team now. I absolutely know he’s not an angel, I think he had just reached his limit of what he could tolerate yesterday. I have tried to view this as objectively as I can and told him that they can’t prescribe any treatment that could potentially be harming him. The other side of me thinks where the hell has everyone’s common sense gone? To allow this to escalate this far is unnecessary. Why didn’t someone just take a bloody minute to think why is this man who is courteous, polite and thankful for everything reacting like this? My own opinion on this is that no one even knows anything about him as a person, thanks to the fact that he has only had telephone appointments since his diagnosis in September. I really wish he would go somewhere else for his treatment. No one wins when the relationship between the patient and team has broken down. I have talked him down this afternoon, he has been to let them look at him, and he’s having his treatment tomorrow. They explained that they were concerned about sepsis, if they had explained this to him yesterday, then all this extra stress and upset could have been avoided. Oh to make matters worse, he rang his go to ask if the oncologist had e mailed him about eye drops….. guess what no he hasn’t. He’s not happy at all. I am trying to hold it together.
