New to any kind of forum, it’s a first for me. Sadly joining because I am trying to get my head above water and learn to swim through the flash flood of an unbelievable Adenocarcinoma of the lung diagnosis. Stage T2b N2 M1a but beyond my belief or comprehension now being classed as stage 4. Hospital and GP have been totally unsupportive and not providing me with any clear information on what has been a 16 week bad trip to date.
Struggling to get my head around the treatment I have been told they will give me. No treatment options discussed with me. Been told sternly that my next appointment and all following appointments will be strictly limited to 10 minutes so don’t know how I am going to have any opportunity to ask questions. Feel dictated to. Feeling under pressure to consent to start a treatment that I have no knowledge of and when I really feel that the risks or alternatives have not been thoroughly discussed with me or my family - this has been an issue before and I have been put under pressure to sign up for tests without proper presentation of the procedure or risks
I feel like I am a piece of meat on a conveyor belt of hospital targets
They don’t like me asking questions...it upsets the appointments schedule and I have been given no contact details to reach anyone at the hospital to discuss things with. I have a very uneasy feeling about all this and would like to know if this is usual behaviour or am I in a bad situation with the health care trust in my area?
The diagnosis was delivered by a consultant who I had only met the week before for about 10 minutes, she was chaperoned by a lung nurse and there was no Macmillan Nurse on hand to offer support to either myself or my daughter
I still haven’t met one and any information,support or advice I have had up to this point I have had to get by hours of internet searches and phone calls to help lines
The stress of that alone has been overwhelming
Completely new to hospitals and dealing with the NHS so have no benchmark to judge by.
I have seen a variety of consultants over the weeks and believe they are all working under the MDT...some not bothering to introduce themselves or inform me of their specialty, only had the meaning of MDT explained to me about a month ago because I complained about their shorthand speak. Different Consultants have given me conflicting information and advice and when I’ve questioned this I’ve been either blanked or had further confusing comments.
Is this what I should expect going forward?
My family is in pain and we can barely sit together let alone talk through how we each feel or how we will pull together to support each other
Again no support from the hospital, this alone is something I would have expected as a basic provision from them...am I wrong? Am I expecting a service that doesn’t actually exist?
If anyone has a life jacket can you please fling it my way.