I always find this blog interesting and today it gave me the opportunity to park something I've mentioned on this blog before. It's the nurses again, and their insistence on talking to me, when really what I would like is for them to ask me if I want to talk to them first. My real problem is that I want to be polite, and telling someone who is trying to help you that you don't want their kind of help isn't that.
Dariusz Galasiński is continuing a pattern (as he says) of objections to easy solutions for clinical communication and gives a response to Sosena Kebede’s recent coment in the BMJ when she writes ask patients “what matters to you”, Dariusz Galasiński says please don’t! My comment is on the blog but I shall reproduce it here without the errors, it was a rant written in haste with typos and a chemo brain (which is a real thing and which I am really suffering with atm).
As I am going through some medical treatment at the moment, the question I would most like to be asked is would I like to talk. Would I like to open up, would I like to tell you anything, or would it leave me feeling overexposed and vulnerable. A simple "are you ok or would you like to talk" would do it. The nurses in the breast cancer unit are very nice, as everyone keeps telling me, but I don’t want to talk to them, I have other people to talk to. I’m not in denial but I don’t like the assumption they make that I want to talk to them, in that appointment, and at that moment. It has consistently been really invasive, and it doesn’t help that I am quite often getting dressed after an exam, so am ambushed. I am also emotionally vulnerable, and people should be allowed to protect themselves, if they don't want to talk to a nurse. It isn't even as if it is the same nurse every time.
Most of the time I don’t really tell them anything but when I am avoiding telling them anything, I sound bright and breezy. This always leads to the nurse saying something really stupid like the one who said I have the right constitution to get through this. I don’t know what the right constitution for cancer is btw. The nurses also all consistently laughed at me when I carried on working, which was very important to me, during what was a long and complex diagnostic process. Sometimes there has to be some normal somewhere and goodness knows why they couldn’t hear that work was very important to me. Instead I kept being told I should look after myself and have ‘me’ time. I didn’t really need more time with me to worry about what the diagnostic process was finally going to reveal. I needed to feel like I had some control in a world where there wasn't any.
If those nurses had done what they said they were doing, which was getting to know me and supporting me, they might have realised that what I needed was not what they were doing. They didn’t though, they had a cookie cutter template and I was probably awkward because I didn’t fit it. In case I just sound like a huge grouch, I have been described in lovely terms by some medical professionals, and the geneticist thanked my Dr for referring "this very pleasant lady"! If I sound ungrateful I am, I would be grateful for people asking me before they talk to me about my cancer, they are professionals. I am of course completely forgiving of anyone in my personal life who does or says anything.
I have absolutely no say in my treatment plan so am happy to talk to the doctor when there are decisions to be made about which order we do things in etc. but anything else would be a token gesture, so I don’t need it. I’m happy that they have a multidisciplinary meeting about me filled with lots of people who know a lot more about breast cancer than I do, as long as they explain it all to me. The doctors don’t really want to know about me outside that discussion, sometimes I do tell them something about my treatment which is important to me, and we can talk about that. I’m good with that.
In other news, today was the first 'normal' post chemo day, so the nausea lasted exactly the same time as last time. Hopefully it might be better next time, the tweak in meds didn't work this time, but it might now. I was beginning to think that the cumulative effect was beginning, this being the 2nd cycle, and because it does. The side effects are building but damage to gums, nails, feet etc. are not as bad as they could be and I am grateful for that.