Hi everyone!

I am a carer for a family member who has dementia & just got over breast cancer,  6 weeks later diagnosed with bowel cancer. MDT ordered CT of thorax, Abdo & pelvis, and found malformation of the right lung. It had to go back to MDT and referred to cardiothoracic. 

we didn't hear from thoracic for 3 weeks, colorectal sent her for a fitness test and gave a date for surgery. I then mentioned she hadn't been seen by thoracic re; a biopsy of the lung.

we heard nothing again for 2 weeks then I get a call from the specialist nurses while I was at work to say they're cancelling colorectal surgery and making an appointment for an echocardiogram and lung function test. I had written the appointment down in my notes, got to the appointment, and long story short, they hadn't added her to the list, Waiting 50min for an appointment with dementia is not for the faint hearted (haha)

We were told we would receive the results for both tests the next day. another 2 weeks has gone by, and I just received a letter for an appointment for 4 weeks time. doesn't say what its for, so I called the specialist nurses again, to see if they knew what the appointment was for. They couldn't even find the letter sent from the consultant! I read the letter to her and she just went quiet and said "oh, they'll probably call you in to discuss the outcome of the test and see if its worth doing the biopsy" I asked how long the appointment would take so I can let work know, and she still couldn't answer me.

Is it me being sensitive because I'm emotionally attached to the patient, or has there been a breakdown in communication & they've realised the patient isn't fit enough for surgery and they'll probably just give palliative chemo? I just feel this hasn't been handled well and I'd much rather know quicker. the patient gets so stressed and anxious having appointments to go to. And when we are in the appointments, the hcp ends up talking to me as they might as well be talking in a different language to the patient, poor love has no idea what's going on, Then I read on her notes, they gave her a patient score of 2! meaning the patient looks after themselves!! I made them aware this is not the case whatsoever! It's like I'm banging my head against a brick wall 

Has anyone else dealt with all this kind of stress and constantly had to chase things up? I feel so bad for the patient, I really do. The hospital doesn't let me know hardly anything so I cant explain things properly to the family, yet I paid over £85 for an lpa medical. seems for no reason! It's stressful for the patients family & for the patient. I could cry