Living with incurable lung cancer

Yes, I would still ask because you want to have a trusting relationship with your oncologist and you've articulated that you're not hitting it off together.   All the oncologists will work under the same framework so I see what he means but it's not working for you.  Even another consultant at the same hospital is a change - a change is as good as a rest huh?

Another option is to ask for a second opinion or for the next appt to be with AN Other?  I've asked my oncologist for a second opinion before.  But then I followed it up with who I wanted the second opinion from - the senior pharmacist in my GP practice.  But it's your entitlement to ask for this and my onco was quite happy to facilitate it, either a colleague in his team, or what he actually did was to phone the GP practice immediately to grease the wheels.  Consultants at teaching hospitals have more oomph getting past the receptionist than a patient.  

It needs to be proposed the right way.  I'm not good at diplomatic stuff.   I suppose the risk is that the consultant takes offence, becomes a blocker, and then you're stuck with a bad situation.  

Are you in England or Wales?  Another option is the Patient Advisory Liaison Service (PALS).  They engage between a patient and the NHS.  A bit like a complaints service but people on here have used them to get information, and chase appointments so they are not just a complaints function.  Scotland and NI have different but equivalent functions not called PALS.  

Thanks Ulls that’s really good advice and I will take my sister with me who is brilliant at that sort of stuff…..this has given me such hope now 

Hi Paul231044 in the by jwe haven't spoken yet, pleased to meet you but I'm sorry to have to have met you here. You have a tough decision Paul, either you stay where you are or you head to Liverpool but I'm not sure how much extra travelling you would have to do. 

My blood cancer meetings are at a hospital just outside Belfast, a 20 to 25 minute drive as long as I don't get stuck behind a tractor or two! There are only 4 doctors in the blood cancer section and when you get diagnosed with cancer all four have to agree. So if I wanted to change hospital there are two hospitals in Belfast but I think only one has a cancer section and it's double the time factor for travel. 

You have the right to ask for trials happening in your hospital and you've got to have faith in your oncologist to search for a trial and that's why there are so many people who are what we call past their sell by date.

Tvman 

Hi thank you for taking the time out to answer my post. I absolutely agree and I think that as the clinic I attend is a satellite unit from the major big hospital so MDT meetings are held prior to the clinic so I think their view is a balanced one and it has to be. I think there has been some great advice and I thank you. I think I am lined up for a trial and hence the radiotherapy that has been lined up. So thank you and please keep in touch. Paul

Hi Paul, I'm sorry I'm late but just wanted the chance to Welcome you to this terrific Group. You have had lots of great advice and encouragement which is what you need to move forward. I don't have the same type of cancer as you but was given 5-7 months to live. Then I started on a Trial. That was in 2013 and here I still am. If that doesn't give you hope, then what will.

I have read all the posts here and like the others, I would say the first thing you need to do is change your Oncologist. We put our lives in their hands, so we have to trust them implicitly. It's a great idea to take your sister with you next time! I used to write any questions I had on a notepad I took with me to every appointment (& still do) because it is so easy to come out and think Oh I meant to ask this and that! So the notebook makes sure you don't forget anything! I even jot a couple of words down to remind me of the answer. Good luck for your next visit! Keep in touch!

Hi Paul, I don't no were you are  but I'm in Liverpool,  I attend Royal Liverpool for bowel cancer and surgeon and for diabetes and Claterbridge Liverpool for oncologist and treatment ( but have  my treatment at home) I've found my oncologist workes in othere hospitals on Wirral as well. Keep pushing for trials, your a young man  and live your best life. I was given 12 to 18 months 3 years ago, my oncologist said but that depends on the person. So keep going eat well and exercise, oh ye I have mets in various places lungs included. You'll get lots of support on here Paul rants laughs and most of all friendship . xx

Moi

Hi Paul, bit late to welcome you, but Hello. Re. oncologist, I got off to a bad start with mine, but eventually the relationship came good, although he has now left the hospital because I think he had his own health issues to deal with. The worst thing at present is I'm left with a stranger on the end of the phone, whom I've never met and whose English is so poor I have to keep asking him to slow down and repeat what he's just said. This is far from ideal of course as there is presently no relationship at all. I got his name, but when I looked him up I couldn't find anything at all about him, so that hardly filled me with confidence. It's hard to think that we'll be able to hit it off, especially as he can hardly string a sentence together. So my advice would be to be prepared to change oncologist, but try if you can to work on the relationship with the one you have. Be straightforward and say exactly how you feel and tell him how you view things. Write down questions and also, perhaps do as I have done, record the answers. I have a little Sony pocket recorder from my working days and I can record a phone call or put it out on a desk during appointments. This is very handy as it's easy to forget details. Wish you all the best and keep pushing. Rainie x

Hi Rainie 

it’s never to late to say hello and thanks for your message. I agree that the one I have is best to use to my advantage. My sister is an excellent source of being able to string things together and do I really want to jump out of the frying pan into the fire as you have just explained. Step by step I want to live with it and  one of the things I have noticed on this group is positivity and that’s something I have lots of so instead of focusing on the negatives I will now be focusing on the positives and keeping in touch with people on here. I was on a couple of Facebook groups but I found them hard work (maybe just a case of finding the wrong ones) whereas already I feel supported by this groups membership.

Keeping positive is sometimes a hard task. We have our down days on here of course: we're only human. But we are also good listeners, kind, supportive, a bit bonkers and often nicely silly. And we really need more silly, more irreverant and more daft. It helps keep us going. Keep posting and keep us all in the loop. We will get to know you as we go and you will soon see what I mean. Take it easy. Rainie x

Hi Paul, what a group where else would you get someone admit they were bonkers, Silly, and daft and I agree, good job I'm not like that, honest Lol