Hi Bri,

Welcome to the forum.

Sorry to hear about the mets and the switch in terminology from curative to palliative - I know what an impact that can have on your outlook.

“Stay positive” can be really annoying advice, so I’ll avoid it and say stay realistic and logical instead. If people give up hope, they make bad choices. I’ve known people give up hope because they wrongly conflate palliative care with end of life care - the two are different, although both are about alleviating symptoms. 

Remember that any survival statistics you receive cannot sensibly be applied to a single patient as by definition almost all of us will survive for shorter or longer than the average statistic. 

Be careful where you get your online information from, I stumblef across some horrendous survival rates only to realise the rates were based on statistics over 20 years old and in the US where access to effective cancer treatment is unavailable to so many people as they simply cannot afford it. 

Best wishes

Dave

No worries - though I can’t claim ownership of the definition :-) 

en.m.wikipedia.org/.../Palliative_care

“It is appropriate at any age and at any stage in a serious illness and can be provided as the main goal of care or along with curative treatment. Although it is an important part of end-of-life care, it is not limited to that stage.”

The NHS should give out a glossary of terms during every diagnosis explaining exactly what the meaning of the terms used is in this context - especially as so many non-clinicians wrongly but understandably equate palliative care with end of life care. 

Yes, a couple of definitions might be helpful early on in discussions....

The telephone call I had from my gastro consultant giving me the initial Dysplasia diagnosis wasn't helpful.  Her accent and manner made it sound like 'dysphagia' which I knew I already suffered from.  Unfortunately, she seemed to have a script that she'd prepared and couldn't deviate from it.  After asking me if I had any questions, she merely repeated her script (four times, including repeatedly asking if I had any questions), but was unable to actually answer any.

A really nice lady and, I'm sure, a very clever doctor, but her english language skills aren't marvellous and her people skills are non-existent.  Fortunately, the gastro nurse specialist has taken over the comms side and is much more clear!

Another update:

We had a chat with my oncologist today....  She’s had a chance to check with the haematologist and my being a Factor V Leiden carrier shouldn’t be an issue with any chemo treatment.  She’s also factored in my tinnitus.  My cancer is not HER2 positive so she’s looking at using EOX for me, 3 x 3 week cycles, then another CT scan

Again, feeling pretty positive and ready to go! 

Cool - I hope the EOX goes well.

Don’t hesitate to post any questions about the EOX regime. My usual advice is to take a book or a kindle because there’s lots of sitting around, wrap up well afterwards as the Oxalyplatin makes you cold-sensitive and avoid anyone with a cold especially lovable but snotty kids who are known disease vectors! 

Cheers

Dave

Thanks Dave!

The Kindle is fully loaded and ready

All 3 grandkids have been told to keep their filthy germs to themselves The Missus has a cleaning station set up at home like an intensive care unit....

I wasn’t aware of just how cold sensitive the Oxalyplatin can be, so a very big thank you for that!  That’s my excuse for tweaking the central heating thermostat   I’ll dig out the woolly hat, thick socks and scarf too

Cheers!

Brian