Clearing the Air, Do Doctors speak the same language?

[Mrs_Elton]

We arrive at our appt with the onc., just a routine check-up, post chemo cycle 3. I knew I needed to clear the air with the onc. I had been very emotional at the last appt when we had got the results of the first scan since treatment began. I was nervous, besides the initial appointment, I hadn't felt 'included' by the onc. even though I went to every appointment. He concluded his check-up and asked Greg if he had any questions. Greg answered no, but then turned to me and asked if I had any for the onc. I took a deep breath, this was my opportunity, it felt like, speak now or forever hold your peace. I took another deep breath. I turned to the onc. and said, "I am a person who needs to feel included, I need to know what I am dealing with so that I can get on and deal with it. Sugar-coating things does not help me. I know that you can't tell us 'exactly' when and what is going to happen,and that your prognosis is an 'educated guess' based on experience. It would be helpful if you can tell us, this is what I would expect to happen in 80% of cases, 5% may have this..., 5% may have this happen etc etc, I am not sure which of those categories Greg will fit in to, but they are the possiblities. Greg and I need time to process what is likely to happen next so that we have time to come to terms with it before we need to help our children cope with it. I got upset at the last appointment because you were ready to let us walk out of your office thinking that we could tell our boys that daddy is getting better. When I questioned you, and only because I questioned you, you told us the results didn't change the likely time frame of 18 months at best. I feel that we need to work as a team and at the moment that is not happening". I may have said it in a different order to how I have written it, but that is the basic content. I maintained eye contact and composure, did not get emotional (upset). The onc. on the other hand kept looking everywhere but at me. When I finished I was blown away by what came next........ The onc. turned to Greg and simply said, "shall we go out and book the next appointment then?". He did not acknowledge anything that I had said........was I invisible? had I just spoken? I knew that I had not ASKED him a specific question, so there wasn't any answer that he needed to give........but........I expected at least, "thanks for sharing that with me, or, that is helpful to know, or..."I'll bear that in mind".......or, "I'll give that some thought",.......or, "I appreciate your honesty". NOTHING..... not a word...... it was like I didn't exist. I walked out of the office feeling totally deflated. Driving home in the car, alone, I replayed the scenario over and over. Later that night, when the boys were in bed, I asked Greg whether I had been unreasonable/not concise. He answered that I hadn't asked a particular question, which I agreed, but also said, "He keeps his cards pretty close to his chest doesn't he?". I said I wasn't expecting an 'answer' to a question, because I knew I hadn't asked one, but I WAS expecting some kind of ACKNOWLEDGEMENT. I felt like it was a total waste of time to have gone to the appt.

[samex]

My oncologist is very open and patient with me answering all of my questions when I ask them - particularly when I was having treatment. maybe I am out of line but should you consider talking to another oncologist? Perhaps your GP could help here. SAmex

[benlisecca]

I love my doctors and they are brilliant with saving lives and dealing with facts but sometimes the emotional stuff is a bit beyond them. I sort of do understand as the emotional drain on them would be huge dealing with cancer patients day in and day out BUT that said this is your cancer journey and you need your questions answered. You and your partner are the ones dealing with the everyday issues and trying to get through it all and you need knowledge, reassurance and confidence in your doctors. Do you have a multidoctor team? Maybe you can talk to one of the other doctors.....i know I am more comfortable asking questions of certain members of my team and they are much more forthcoming with answers. Most of the oncologists have nursing staff that work with them and they are great to get info from too. They often explain things to me that I don't understand...deciphering the doctor speak, breaking down the information. It took me a while to discover that these nurses are there.... but they are. I agree with Samex.... is it worth trying another oncologist? Keep asking the questions, keep expecting the answers.The "not knowing" is tough. Take care xxxxx

[Mrs_Elton]

Thanks Samex and Benlisecca, Tomorrow will be the big test. We go to see him for the results of Gregs CT scan today. We are generally happy with what he has achieved, there has been reduction in the primary and mets, and Greg has had minimal discomfort and side effects........but.........like you say, we need our questions answered. Greg has been seeing a different GP to our family GP, just because it is more convenient to his work, so I don't get any info from them cos of the confidentiality issue. As Greg is only having chemo, we don't have a 'team' as such. We only see the oncologist. When he was receiving treatment we could and did talk to the nurses on the day ward, however now that he had finished treatment, we don't see them anymore. I totally agree that the emotional strain on these 'medical staff', just lumping them all together, is something I would never wish on anyone. For sure, it would be tough dealing with people dealing with cancer all day every day. Fingers crossed it goes well tomorrow!

[Glenn]

My wife had a very caring oncologist but I found my wifes surgeon who broke the news to us about the cancer spreading to be very cold and matter of fact. You need to know and should know all of the facts and details of what is going to happen and what to expect....Glenn....

[Versaillon]

Hey Mrs Elton Like you, I need to ask questions and feel included. I couldn't handle being in your position and had that been me, he would have faced my full wrath. I'm not a person who will take crap from the medical profession after dealing with them for the majority of this year for one reason or another. They will listen or I will yell and scream LOL. Rob's oncologist is a woman, pregnant at that and she is amazing. If I have a question, she answers it until I'm satisfied and she listens to everything Rob has to say. As the other girls have said, maybe a change in oncologist is needed because right now, you can't have your questions unanswered. It's only going to drill away at you. And I agree, the chemo nurses are great. I know all the chemo nurses by name, they know who I am and if I have a question, I just ask. They're happy to answer my questions and even the chemo doctor on the ward is wonderful. It really does make a difference with treatment and doesn't make it so stressful when you have someone who takes the time to listen and does it with a smile. Good luck for the scan results. I'll be thinking of you! Jo xxx

[Sailor]

Hi There Mrs Elton Like Samex I would consider another oncologist. Some years ago the very gentle soul who was my surgeon and went out of his way to explain things to me, was diagnosed with leukemia, closed his practice and died within the twelve months. His case notes and patients were passed onto another surgeon (interestingly the patients were never consulted about this!). This second surgeon, I described in my Blog "Sailor you are Remarkable!" as a good plumber but with the people skills of a demented cockatoo. Technically he was good but from a communication perspective he was hopeless. So I sacked him, made lots of enquiries and found another gentle person who takes my, and my partners, enquiries seriously and tries to answer them. A person of few words, but who treats us as intelligent human beings. Another some years ago I was in a workshop on something or other to do with cancer and communication. We were in a small group and some researcher was prattling on about the need for evidence and was there any evidence that better communication was linked to better patient outcomes. My response as the token consumer in the group was "even if you could do a double blind trial on providing information to patients and that showed that there was no benefit, I would still say that it is one of my fundamental rights as a human being to know what is going to happen to me". So be brave, change your oncologist, but make sure that he knows why. Cheers Sailor He who studies medicine without books sails an uncharted sea, but he who studies medicine without patients does not go to sea at all. William Osler

[thaker]

Hi Mrs Elton I agree with everyone else...if you can't get your oncologist to understand you, its time to move on. Having said that, I too am going to have a talk with my hubby's oncologist at the next appointment next week. Hubby and I are starting to feel as if the neurosurgeon and the oncologist are only giving us information on a need to know basis. In 2000 when hubby had a grade 3 brain tumour, that worked well for us because we could ignore the gloom and doom and focus on moving forward. This time around hubby has a grade IV and we are worried that we might not be making the right decisions (as to what to do with our lives at the moment) because we are not being given all the information. So, I am going to try to get the oncologist to understand that I need the guts and all of hubby's current condition. Since hubby was diagnosed in Mar 09, I have been able to be positive but the last week or so have been difficult not because I have lost faith but my gut tells me something is very wrong. I am hoping that today's scan will prove my gut wrong. I suddenly feel like we don't have much time left. Can't relly explain why. Anyway, I hope you had a better appointment (yesterday?). All the best

[Mrs_Elton]

Thanks for your comments everyone, what I forgot to mention is the dates that this was all happening. My blog entries are starting from when we first discovered Greg's tumour, they are an attempt to 'cleanse' myself of all the 'stuff' I have held in and picked up and carried throughout our journey to date. This particular experience occurred back in about July when we were halfway through Greg's treatment. At that point in time, Greg only wanted to focus on 'being positive' throughout his treatment. He was not willing to discuss anything potentially negative or address any concerns I may have had with regards to the future. As a result, every time that I raised a question that had the possibility of being something he didn't want to hear during our visits to the onc. (and more so at home) he would shut me down immediately. For example, I would mention that Greg had woken with pain during the night and Greg would totally deny it. When I asked what we could expect in the next 6 months, before the onc. even had a chance to answer, Greg would say, "He can't tell you that, it's not that simple", naturally the onc. would breathe a sigh of relief and let it rest there. Basically I feel that Greg was in denial. He wasn't ready to hear anything that wasn't a good result. Perhaps the onc. could read that better than me and knew that Greg needed time to 'process' everything. Not long (days, maybe a week )after this particular appt, I broke down with Greg and told him I was really struggling. His first words to me were "Don't YOU start feeling sorry for yourself, do you realize that I might not be here in 12 months? I am terrified", he said. I immediately responded with "yes, I do realize that and I am terrified too". He then went on to tell me how I had let him down by not losing weight and getting my fitness up, (which was something we had discussed when we first got his diagnosis). To say I was a little bit upset, is an understatement. I felt crushed. I was glad that he had admitted he was terrified, because I think that was a HUGE thing for him to admit and it actually took some pressure off me in a sense as I now felt that I didn't have to keep 'reminding' him of the reality of the situation. So........after all that, my reluctance to 'push' the oncologist for more information and answers 'back then' was because Greg wasn't 'ready' for it then. I didn't want to be the 'wet blanket' over his little fires of hope and I didn't want to be the cause of more pain/stress for him. Since then, I speak openly with Greg about the questions and concerns I have and if he can't deal with it, then that is unfortunate, but it is his decision/right/choice/problem. Tick any or all of the above! Our appointments since then have been more successful for possibly the following reasons:- 1) I have had more time to 'work' out the kind of person the onc. is and therefore know better how he 'ticks'. 2) It's not quite so 'new' to us now, we have had a little bit of time to get our heads around how everything happens. 3) Greg is more ready to 'hear' things. Anyway, that's enough for now, perhaps if you read each of my blog entries consecutively from the start, it will make a bit more sense to you. Primarily I wrote them for me!! I will have to add the next one to bring things up to date and lessen the confusion I have caused!!