Things they don't tell us and should

[mikeydt1]

if we are dying then surely we have a right to know and then make plans, seems that after been diagnosed in 2018 with diverticulitis which was confirmed with various scans that there was something they didn't tell me or want me to know.

basically at the time they wanted to operate, i choose the medication route and later was told that it was more than likely i would of died as a result of operating.

fast forwards i was then told it was next to impossible to operate but every time i quizzed the team they seem to avoid the subject until i saw a bowel surgeon early this year only to find out the reason why they couldn't operate. basically my bowels have all stuck together. i was told it would of been worse than operating someone with cancer.

surely as an adult you would of thought that the surgical team would of told me about this when first diagnosed in 2018 but nope it took 2 years to find this out.

as it now stands if i do get a very bad infection then it could be a case of saying goodbye.

it seems strange that a surgical team wasn't upfront with me but when it comes to fibrosis with a 20 year outlook i am provided with full details which came through the other day.

i know for many talking about the above is pretty grim stuff but any input is more than welcome.

 

[everydayupsanddowns]

I think you need to discuss this at any follow-up appointments / checks with the teams involved @mikeydt1

Communication is a tricky thing, particularly where the subject matter is serious, and I think HCPs have to judge the way they share information on how they think a person will react, and what will make it easier. There are times when they will decide to be extremely candid - because no other option is possible (I know this with some of the appointments I went to with Jane). But I guess other times there’s a judgement call to be made, and lots of grey areas with few certainties, I suppose.

It would probably help your clinical team to know that you prefer a completely pragmatic and clear approach, so that they know you’d prefer to hear all the details - rather than a softer approach.

Alternatively if you feel you have been adversely affected by the way your case was handled, you could contact PALS?

 

[trophywench]

That impressed me, the candid approach with cancer when Pete's prostate cancer was being dealt with too Mike. No beating about the bush, told it like it is. Truthful about options (if any) and likelihoods. Was one partic occasion after the main event when I could have easily smacked the consultant for what he said to a polite request, but give him his due he had no idea that GPs in the same CCG could not prescribe what was suggested by his clinic without a specific say-so from him, so he apologised once he'd had our GP tell him rather than us and he'd sorted it out! Even in this day and age - joined up thinking doesn't happen every time.