Hi Dannie

Trying to deal with the situation is a challenge at the best of times, but it sounds like the classic situation of only getting part of the picture which can be even more frustrating.

But to answer your questions (and be aware I'm not a medical professional - I just have a vested interest):

T4aN2M1 - T4a is the spread of the cancer and shows spread to other local areas, N2 is the number of lymph nodes affected (between 4 - 6) and M1 is showing that it has metasticised to other major organs). M1 - usually the marker for going on to the palliative route rather than M0.

Now - like you say - everyone is different, including those who are dealing with the illness and how they deal with it and decide how much information to share with others.  This is where the frustration kicks in.

But taking what you have said - Important facts 1) he is eating ok, 2) he is looking well, 3) he has put on weight, 4) He handles the chemo well.  Getting out of breath and losing the balance can be attributed to the chemo - depends what he is on - the platinum based ones affect the nerves, especially in the feet and hands.

And as everyone is different - so it is true with the palliative treatment.  There are a group of us, including those on the palliative care route on this chat https://www.cancerresearchuk.org/about-cancer/cancer-chat/thread/osophagus-cancer-diagnosis. Feel free to pay a visit - we're a friendly bunch, with the occasional dark sense of humour thrown in.

bfg

No problem at alll Dannie

I've just realised that your Dad is 2 years younger than me.  :-)

And you are right - Google is not your friend with this, and the landscape is constantly changing with new treatments being trialled all the time.  The treatment I'm on has only been approved for about 3 years now, but I believe doubled the 5 year rates.

The non-palliative route is basically 2 months of chemo, 6 week break, major operation, 6 week break and 2 months of chemo.

The complexities of each individual on how they respond to treatment means that it's a nightmare to try and work out exactly what is going to happen, which is why the statistics don't actually mean anything.

Your philosphy is bang on though - he is more than a cancer patient.  He is on his own journey, and challenging though it is - he's dealing with it on his own terms, and that can be really difficult for you.

In many ways it is easier for the cancer sufferer - it is, what it is and you sort of get on with it. 

I look back over the years to great friends and family who never had a reminder to take full advantage of what we have, rather than what we could have, and once COVID restrictions are lifted and i've gotten over my 2nd round of chemo - then that's what we'll be doing and it looks like your dad is doing the same.

Take the positives - he looks well and is mentally positive!  Trust me that is a huge plus, and as for his other issues - he is at least "out there" with his family. All of the symptoms that you've mentioned can be attributed to the chemo he is on, to the cancer itself, or just a damned awful meal  :-).

The overriding message I've come across the other messages - is to "Make Memories".  Don't focus on what "could be" - it's like you said, don't let cancer define your dad - focus on what is!

There are others around on the palliative care route who have been on it for years.  There is even one guy on our "chat" is now in remission nearly a year on and another who appears to have it under control to the point of operating on it (which is something I'd not heard of before). So there is always hope.

cheers

bfg