General Discussion

Thank you, ShimmeringUnicorn you are explaining it much better than me. I think it could help  too.

I wish I could do this. I tried once to create my own local Ai but my brain just doesn't work that way lol. I use Ai a lot to create structure to the information I give it, because I just can't anymore.

Nope. They can't force treatments on you, but they can take away. Their thinking is very singular, you have a tumour, tumour needs removing, and that's it. My HRT has been stopped, despite my research showing how hormones are needed for my health conditions and neurodivergence. And despite their research only being done on healthy neurotypical women. There has not been the NICE guidelines claiming shared decision making at all.
I get pissed off when people think they know my body better than I do, and that all they have to do is take something away and throw drugs at me to combat side effects. There's a lot of ego and ignorance in Oncology that I'm experiencing.

  some links for you.

https://asiam.ie/
https://aspireireland.ie/
https://autism.ie/
https://www.cancer.ie/our-services/peer-support 

I understand your need to be heard and seen as an individual with all your needs taken into consideration.

Within the oncology department, unfortunately, like so many health responses, treatment is delivered in a silo rather than truly holistically.

Despite policy and best intentions and phrases such as 'patient centred' and 'shared decision making', time is of the essence.

Experts and specialists are skilled within their own field and their own role and remit within the system. I am sure their professional development means they need to keep up with research and possible treatment approaches as they unfold.  Clinically possible however doesn't mean deliverable.

Add in the vast array of patients who come into their sphere at different points in the process of shock, denial, anger, acceptance, panic and fear and with different levels of understanding.

As we know, different people need different things. What, how much and in which format should information be shared? How much guidance or autonomy are people happy with?

We are bombarded and gifted with a lot of information on all sorts of things these days including disinformation, wrongly interpreted information, misleading information, non evidence based information and ... utter tosh.

This means some patients will have ideas that have no sound basis.

Given the limited amount of time available for oncology and other appointments, I doubt there is an opportunity to truly unpick an individual patient's knowledge and understanding when they make unconventional treatment decisions or reject an apparently tried and tested approach.

Staff present the best options based on their own knowledge and experience rather than the patient's. 

Law of averages of course means there exists within oncology some arrogance and ignorance 

Cheers

Tried and tested on a narrow margin. "Disinformation, misleading information, non evidence based information" - that is exactly what many consultants are basing their knowledge on when it comes to people outside that narrow margin.

If a patient is neurodivergent, or has fibromyalgia, chronic fatigue, osteoarthritis, or whatever other condition, they should be able to get balanced honest evidence of how a treatment plan might effect them long term. Or even short term. It's effective decision making.

"As we know, different people need different things. What, how much and in which format should information be shared? How much guidance or autonomy are people happy with?" - try asking them.

And with the millions cancer research UK makes every year in profits, they should put some back into researching other models.

One size does not fit all and guidelines are changing to incorporate that. Research needs to follow.

I know we often don't feel heard or that sometimes we are allowed to speak but are not really listened to.

Asking patients what they want seems reasonable. I believe however, some of us don't know. It may be that our diagnosis is a shock or that action requiring decisions is urgent. 

For some, the more information and the greater the number of options there are, the looser our grip becomes.

We may have existing health conditions and health management regimes when given a cancer diagnosis.

Some of our health situations may have a hard won, tenuous balance that is easily tipped off kilter and we aren't prepared to throw this to the wind in order to tackle our cancer. 

To those who see our cancer as our critical health priority, this may be difficult to comprehend.

Take care

Exactly, and every experience matters.

Hi

I have just recently been diagnosed with squamous cell cancer in the oesophagus. I am meeting next week with my oncologist. Would my treatment start soon after that?

Hi and welcome. Sorry to hear of your diagnosis and hope you get your treatment plan soon. It will help you to feel a little more in control. 

Have you got a named cancer nurse yet? It is early days and can seem overwhelming.

If you are new to our forum, it is divided into different bits to help people find the particular kind of help and support they are looking for.

The site currently has a few technical issues that are being worked on but it looks like you haven't had a response here yet.

There are sections for different types of cancer, for carers and loved ones, those awake at night etc.

This particular section you are in is for those with neurodivergence and cancer. May I ask if you consider yourself to be neurodivergent?

You may find information about typical treatment plans from others with experience of squamous and oesophagus cancer by looking up those terms in the drop down list in the search option.

There is also the Macmillan Support line you can ring during the day.

Good luck, if you get stuck, pop back here,

Take care