Hi everyone, I don’t post on here very often anymore, but always read the secondaries post. I wonder if some of you would be kind enough to read the waffling rant that follows and offer me some advice. It’s nearly 3am and my mind’s racing a bit.
Just to preface, I have liver & bone mets (diagnosed Jan 2010). On Tuesday I had my clinical appointment at the hospital; since my last one, increasing shoulder pain meant that they scheduled for me to have some rads which have helped enormously. There was a massive delay in the appointment times (one of the two consultants was on holiday) after nearly 2 hours I was called into a room and was seen by a registrar. He was very ill-prepared, fumbling through notes, no working computer, very poor English-speaking skills - please do not think I am in any way racist, it was just enormously difficult to understand everything that he was saying. He asked if my pain was better in my shoulder and then asked if I had any other pain. I explained that I was always in some sort of discomfort and explained a new area that was causing me gyp, he nodded but said nothing. I asked him for my blood test results, but he didn’t have them so then had to wait for that to be organised. I asked him if my bone meta were progressing (I had an x-ray last time as part of a clinical trial) and he waffled, I missed half of it due to his mysterious pronunciation, finally I just left it. I also asked him to explain how I should describe my bone mets (I.e. location, stability) as I am about to try and search for insurance for a summer trip to Vegas. Again, he made no sense. Anyway (I was with my sister and she was quite annoyed but I diffused it because she often gets more stressed than me), in the end, I had to ask him to request a scan appointment, to book my next visit and to organise my bloods form.
I left feeling a bit unsatisfied, but now, lying awake in a bit of discomfort, I’m wondering whether I should contact one of the consultants - not exactly to complain - more to stress that I didn’t understand the point, nor outcome, of my visit.
Does any of this make sense? Am I making a mountain out of a molehill? If you do understand what I’m trying to say, I would welcome your thoughts. Like many people in our position, I need to feel in control of my personal information and certainly need to leave a consultation feeling that I have understood what I have been told.
No wonder you are having a rant, I would contact onc sec or if you still have a BCN and just tell them what happened. You need to know what’s happening with your own body. There is nothing worse or more frustrating coming out of appointment just as clueless as you went in.
I would phone them right away, you need to know what is going on, even if they can tell you by phone. Please take care lots of hugs and get dialling xx
You are not being awkward or anything. I agree with you in wanting to have ‘control’ over the mets and information and treatment plan and to understand it. I feel it gives me the upper hand over the disease!!!
I would say contact one of your consultants and perhaps say you would prefer to see one of them as you want clarification about a few things. Why not put it in terms of you weren’t expecting to see the new person you weren’t used to, you were stressed after waiting that length of time as was your sister and that since you came home you have been trying to get it all straight in your mind (esp re travel ins) but not managed to clarify it all and that is has kept you awake worrying about it?
Perhaps if you do it from this angle it won’t seem like a complaint but you can get your point across. Then get another appt and write a list of things so you can go through it all with someone who knows you and your history.
I often see a registrar but on the couple of occasions when I have wanted to see the onc herself as it involved questions about my situation re work and retirement, she has fitted me in to her clinic without any problem. Ok, I had to wait a bit longer but that was fine. At other times I have seen registrar and then they have gone back to onc to clarify and got me in again say a month later. I have bone mets by the way.
Alison, your not making a mountain out of a mole hill, it sounds utterly confusing and like you said what was the point of the appointment? when I was first dx I had a registrar tell me that my BC had spread to my lungs he was an (I am not a racist) indian doctor and I couldn’t quite understand all of what he was telling me apart from the fact that he told me in a very unsympathetic eye rolling type of way, I told my BCN and she has made sure that I never get that registrar again infact she confided in me that she had problems understanding him and that when delivering news of such magnitude he should of been more sympathetic. I suggest the same as Katyc contact your BCN and explain the problem failing that phone your Onc’s secretary and ask for a telephone consultation with your Onc.
Hope this helps
sending you love and light
sarahlouise xx
Sadly there does seem to be rather a lot of unintelligible and ill-informed registrars out there…
You’re not being OTT, you have a right to be properly informed about what’s going on, so asking for further (er, well INITIAL) explanation is a very valid thing to do. As suggested, write down all your questions and don’t leave until you understand the answers.
At one of my appointments I saw a doctor, must have been from somewhere on the eastern block, anyway as nice as he was I couldn’t understand a word he said. Fortunately a BC nurse was on hand and had to virtually act as an interpreter, I felt I was addressing any questions to her rather than him.
If I was visiting a hospital abroad I would expect this not here.
Thank you everyone for your support. My legs were bad last night and I ended up taking some codeine which has the effect of making my mind race…I wish I could paint, it’s terrible for sleep but it makes me feel creative!
I phoned around for some insurance today, have found a company that will cover me albeit horrendously expensive - it could be up to £1,000 for a week in the States. If I was going to Europe I wouldn’t bother and seeing as I am not paying for the holiday, I may well bite the bullet.
I will have to write to my onc. to request release of my medical details, so I may mention my disappointment at my last consultation.