Where am I now – puzzled

So, I haven’t written anything for a week mostly because nothing substantive has happened.

Although I had an appointment with my normal GP in 2 weeks’ time, I decided to go back sooner to the doctor who had given me the news in early June and have a chat with her about what was going on and whether or not she could expedite anything (as had been suggested by Dr Parnell’s secretary).

I explained to Dr Sweeney that I was concerned at:

  • the lack of communication between Leeds hospital and myself,
  • that I was unsure whether or not anyone over the was looking at my total pathology or simply dealing with individual issues,
  • that after mention of the word ‘urgent’ on more than one occasion I was surprised to find myself in a queue with a 6 to 11 week wait for an appointment at the endocrinology clinic
  • and that I had not been able to get straight answers (or indeed any answers) to whether or not my scan had been received by the hospital and whether or not and MDT had been held to consider my case.

Dr Sweeney explained that she had had a couple of letters from the hospital, on looking at these I found that I haven’t been copied in and she happily gave me copies. There was nothing new in these letters –  the original referral from Dr Yoga to endocrinology and ophthalmologists and a copy of a letter from Dr Randall asking for an endocrinology  appointment. I’m disappointed that the hospital don’t find it appropriate to copy me in on this correspondence and will mention this in due course.

Dr Sweeney seems to share my surprise at what was not going on and undertook to chase up the referral in the hope of getting a firm appointments for endocrinology sooner rather than later. We will see.

Now, one week after seeing Dr Sweeney I have still heard nothing. The one consolation that I have is the conversation with Dr Sweeney in which she pointed out that without the Biobank scan we might never have known about this adenoma and that, as with loads of women with breast cancer and loads of men with prostate cancer, I might well die from other causes without the adenoma ever being a problem. Nonetheless, she understood my concern to get expert opinion.

I think one of the things that concerns me most about this is that nobody is telling me anything, almost everything I know I have found out either by searching on the Internet or by asking specific questions on the rare occasions I ever get to see anybody. Nobody even sat me down and explained what adenoma was and were it not for my own efforts on the Internet I don’t think I would have found out that the condition is not immediately life-threatening, as I had suspected when seeing the look on Dr Sweeney’s face when she first told me. This is really not good enough. Surely someone should take responsibility in these circumstances but sitting patients down and ensuring that they know the basics about the condition that is being diagnosed?

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