Hilts fantastic to hear about the pizza, and the holiday, good for you, loving the attitude x

Hi, all, 

Glad we are all moving over and finding each other, just got to track down Doug now (: he is almost a year post op . And of course there is the amazing Davek who is 7 years (I think) into his non operational palliative.

i think 'palliative' is a word that seems to strike panic and horror into most. It took me a while to work it out. When I was a young student nurse (early 80's) that term didn't exist. What is now 'end of life' was called 'terminal'- it used to make me smile rather, as of course we are all terminal from the day we are born! Palliative effectively means 'treatment of a chronic condition', relief of symptoms when they play up. I thought many years ago it meant check out soon, but no that is 'end of life care'. Why am I talking about such things.........

Nothing is off limits I guess, if it is on our mind.

Yes Daisy- we really are in **** it mood. All that 'healthy living' claptrap is defo not in fashion in our house. I have said that I am now going to follow the 'Keith Richards health promotion plan' . I love the guy, I actually really do find him quite inspirational (: how on earth is he still here!
It seems if you try leading a so called healthy lifestyle then you still get *** like OC. I really am feeling like ' I am only here once and I am going to have fuuuuuun.

Guess what is on my mind now though......give up?
'what are the symptoms of reoccurrence'- wth, I mean, I have to have a word with myself sometimes. Of course I want concrete stats and symptoms, deep,down though I know that will not happen. Aaarrrg. It is on my mind I guess, because there is a little gap in there where the treatment 'worry' was , now I have created worries to fill the gap.......

My husband also felt a bit 'peckish' in the night last night- came down and has THREE weetabix  with sugar and maple syrup, then had the cheek to moan about wind........and regurge.

This 'predictive' text is sooooo annoying. For some reason it doesn't seem to like my lingo.(:

Time for some tea I think.....

Hi BFG,

Thanks for your reply. That's good to know that your oesophageal cancer is in the same lower part of the oesophagus. Yes each person is unique. This supportive chat group has helped especially as it can feel isolating in the best of times without the extra difficulties of COVID. My husband is due to have his second jab soon so this should be before the op. I've been baking and generally fattening up my husband. Fortunately he has been able to  eat but he definitely found it easier after the second cycle of FLOT. He did have nausea but medication and chewy ginger helped. We've done a 3 mile walk today after a zoom exercise class which is linked to  the NHS. 
 

Well done for getting this far and I hope your next  round of FLOT goes well. Sounds like it's just over a month since your op? 
 

Kindest regards

Milly 

Hi Daisy,

Thanks for your reply. I am pleased that your husband is responding well to the treatment and has gained weight. It is difficult to comprehend when the diagnosis is given and even weeks/months after it still feels unbelievable. My husband also looks well which we can only take as a positive. I think Hilts response to your question re palliative care is very helpful. I have a friend who has bowel cancer and was given 'months' but five years later is continuing to receive chemo. She has also agreed to clinical trials. She looks/feels well and before COVID enjoyed trips away and going about daily life.

I hope your husband continues to do well and my best wishes to you both.

Kindest regards,

Milly

Thanks, that's really good to know! 

Hi rayb

Glas to see you on the mend i was  worried you had gone missing , i haven't been on much as i am on the fed up bored part of my journey until shielding ends here on the 26th , i hope you are getting there as i see you have had a couple of issues , pneumonia is scary i had it in my teens , otherwise stick in and look forward to summer , take it easy.

regards

Douglas

Hi Doug, 

As the 'veteran' of this board, would you mind filling in the gaps for me. As you know he is now 16 weeks (or thereabouts) post op. He has been discharged by Dieticians & oncologists, just have the surgeon now. Soooo

1) No info as yet about going forward. All the Surgeons are looking for in his follow up is 'recovery from the surgery' . Fine , BUT my mind now has empty space to put new worries in,( why change a habit of a lifetime) what I really want to know is how they go about checking it has not come back..... in the Oesophagus (or what is left of it) or anywhere else. Sign , symptoms etc. What to look out for...

What do you get  in terms of follow up,if you don't mind me asking (cheeky sorry )

Any info greatfully received.

Thanx

Hilts

Hi Hilts

I get where you are coming from , my last contact with my surgical team was over seven  months ago and my oncologist was november i dont see him again until start of June , you do start to feel a bit forgotten after all the intense activity of chemo and the operation , unless you have any real concerns and feel recovery is not progressing well their is no real reason for any interim visits , you can speak to your cancer nurse about physio which is where i am currently on to try and build up muscle mass loss properly , any other questions i have been speaking to my GP, maggies centres are a good source of non clinical advice for loads of subjects , otherwise there is no reason for any follow up scans at this time i have been told, i am now 9 months post op and 77kg and reckon i will be 100% recovered by July , patience is the thing here , not pushing things to far , now shielding is coming to an end we will all have a bit more freedom , by the time you reach 6months recovery you should be seeing a big improvement in eating control , energy levels , mobility, and general well being , everyone i meet keeps telling me how well i look in comparison to a month after the operation when i looked like a corpse, i am sure you will both similiar things in coming months , so don't think you have been abandoned if you think something is not going right let your GP know ,  remember i am only a punter the same as everyone else on here but am always happy to give my take on the whole process , anyway keep in touch and take care , good to see Rayb posting again to.

Regards

Douglas 

Hi Doug, 

You are indeed a punter, but never an 'only'. You are ahead of most of us in this  OC game . and post useful stuff.

i am 'off ' on one at the moment. Obsessive thought cycles , but hey ho, why change a habit of a lifetime and I know it is all to do with 'keeping it going' for the last 9 months. I take a while to download and process info. Once I 'get' stuff then I move on ( to the next obsessive worry ) lol.

Husband it doing really well, weight back up to 90kgs. No problems with eating, apart from the odd over indulgence, but ever the scientist, he is conducting'experiments' to see what he can get away with.... I'll leave him to it.

What is really bothering me is how do we know if it is back, stuff to watch out for etc. We haven't been told anything, are you being scanned, scoped anything like that?
He doesn't really have any post op stuff going down, no real problems, just expected stuff. 
I am after the specialist nurses, no luck yet though... I will ask them my traditional' no flannel question', when I get to finally speak with them.

I am not bothered really by all the professionals disappearing off, it is a good sign, but I need my (current) obsession sorting out (:

take care

hilts