Dan's thread

I was always warned of the risks including that I could die during the process (0.02% chance), that it may not be successful and I might not get as much time as we’d like.

My family and I are aware I’m living on borrowed time, had I not been diagnosed when I was I more than likely would not have seen this Christmas.

What it has given me is hope.

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Informed consent to treatments is really so fundamental these days which is why I initially responded. Anything other than minor or trivial treatment complications should ideally be discussed beforehand (I think you suggest they were).

Tbh it’s really not how I wanted to start my Saturday morning, but I except that if you put yourself out there you have deal with the consequences.

Please don’t delete your post, as I do appreciate your support but think it’s time to move on.

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:+1:

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Thank you for a humbling reminder that even that doesn’t always help.

:slightly_frowning_face:

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What Alley_Cat states is so true regarding what some specialists say. Some say the most ill considered things. I’m sure they sometimes go home and reflect on what they’ve said/done during the day and learn. Being unwell puts one in a very fragile and vulnerable state of mind.

Hypothetically we’re all under a constant state of change and no one knows what’s happening next.

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'tis true. I’d be rich if I had a pound for every time I reflected back and thought of myself, what a total arse. Why did I say that to them ? Utter d%%khead.

It’s pretty human to say the wrong thing at the wrong time or the right thing the wrong person. I try and cut some slack for others knowing I need a lot of slack myself.

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When I say some specialists say the most ill considered things, I mean ime they’ve become so detached that they just say it as it is, even if the odds of a negative outcome is very remote. They have to cover themselves. We as patients hang onto every word they say, then think too much afterwards.

Yes that’s bordering on another problem. I’ve definitely had the experience where I’m a patient not a person.

I noticed the hospital I go to has a row of counselling offices which are required in order for a non doctor staff to talk about your diagnosis and next ateps as though you are a human… Which you don’t always get from the actual doctors. In the drive for efficiency Ihave often been at hospitals where everyone is given a number to wear around their neck and told that within these doors my name does not exist.

For example, my father in law has dementia and he is also (always was) a person with a… fristrating personality to interact with. After one round of MRI scans and cognitive tests, Mrs. FZ asked the doctor what the prognosis was. The doctor just said, “Well your dad’s severe behaviour problems are 30% vascular dementia related and 70% that he’s a total a%%hole.

100% true. 0% helpful.

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[quote=“feeling_zen, post:990, topic:33191”]
Well your dad’s severe behaviour problems are 30% vascular dementia related and 70% that he’s a total a%%hole.

Sounds like my cousin

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Actually it’s probably a good example of both problems. The doctor doesn’t understand he’s dealing with both a person and the emotional attachments that the patient has with others and just calls it like they see it.

But then Mrs. FZ tells me about it, clearly upset and not sure what to do with her dad. When she gets to the punchline (I just can’t think of the doc’s reaction any other way) I then burst out laughing and said, “Oh so it isn’t just me then.

Clearly on reflection, I made an error in judgement that day.

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That’s definitely true, guess we have to remember that doctors/councillors are dealing with this day in and day out. It’s their job to deliver some awful news to patients and families, they would have to build a defence for themselves. So far I’ve found most to be as compassionate as possible, except for one we dealt with when I had the flu. We gave him the knick name of Dr Death. Without anything to support his theory he rocked into hospital and told me he believed I had a secondary cancer on my lungs. He was thankfully incorrect. Even the nurses commented on his negative approach.

Also I affectionately call my councillor my Dark Angel.

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A bit like my local GP who when I developed covid during early 2020, told me over the phone that he thought I might have lung cancer and recommended a trip to an oncology unit as the next step.

Thankfully he was wide of the mark, and I have also met some wonderful health professionals over the last few years too.

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It’s the down-side of ‘duty of candour’ and an example of where this can conflict with other principles such as ‘first do no harm’.
Obviously it’s now contentious but there were some aspects of the older, more paternalistic approach that had merits - especially when practised by compassionate and wise clinicians.

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Yes, I was going to mention that more paternalistic approach of old which always had its pros and cons, though in more litigious times it’s clear why health professionals do this. Duty of Candour is a huge can of worms.

In all honesty I made an incorrect assumption about Pete’s counsellor session and it came over as though he’d been surprised by this comment but a subsequent post made me think he knew but didn’t find being reminded a pleasant experience.

He clearly has confidence in the counsellor which is fantastic especially when being warned of cutaneous problems he might notice and be able to address early.

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As Dan has not contribute to this thread for a few days I hope he is ok

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Hi Ian,

Thanks for asking after me.

I’m about to see my oncologist this morning who is in charge of treatment plan. With recent operation debacle resulting in cancellation of lung op last week, not feeling so great about things, to be honest.

I think I will hear what oncologist has to say first. Obviously I have submitted comments to PALS. Be interesting if she follows up on that or not.

Health wise I feel okay. Mentally a bit demoralised by events with NHS beyond my control.

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Hope the Oncologist sorts out this mess for you🤞🏽

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Thanks for touching base, so very cross at what has happened in your treatment.

My very best wishes

Ian

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Good luck Dan, hope things start to happen. Cheers

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