Hello

I was advised my tumour was T2 poss T3 , localized and poss may have spread to nearby lymph.nodes but no other areas .

I was told aftet my laproscopy I will after chemo be having full stomach removal.

At no time have I been told so far will.not be having operation.

So wondering what stage was the scans showing , and why you were told operation and it's changed after chemo.

Mark

Just checking you ok , and got my response 2 days ago

His tumour is T3 and in 2-3 lymph nodes. No other spread. If the washings from the lap come back to show there is no microscopic spread then the opp can go ahead!

So  cancer very similar to.me , I will be starting my last chemo cycle tomorrow then have scan in 2 weeks , I.have been told consistently this is pre op chemo. So I will be interested if there is a doubt after chemo .

Strange you have been told there is now a doubt.

Must be so difficult to wait.

Best wishes

Mark

hello Daisy 100

really gutted you and your partner and also not forgetting your family are having to go through this dreadful journey together ,( I’d rather be on a journey to a nice hot country with a pool !! )and your story is so very similar with what me and my family have been going through and still some stuff left for us to go through before I ring that bell off it’s hinges!! I’m back this week to start with my mop up chemo sessions another 4 rounds !!! but with a lower dose to start as I’m not as strong as i used to be just yet after my operation but exercising when I can and when feel up to it but taking my time and not pushing to hard as it affects the next days activities but there is light at the end of this sometimes dark tunnel and you must really believe this and stay strong for yourself and your partner , your partner is still a young  enough to smash this nasty thing right out of his body quite a bit younger than I am , when I was in hospital there was a few patients who had Gastrectomys and I really couldn’t believe it they was up and down the ward like mr bean :) back and forward within a week or so and then back home I found this really inspiring while I was waiting for my PMA to kick in , I was in your very similar scary tunnel for a short while ,i found it was a lonely place until I discovered my PMA ( : positive Mental Attitude): it was there all the time I just had to release it ,!!every one’s probably thinking it’s getting boring now but I can assure you it works it really does help in the fight and it continues for us keep it with you at every appointment, when you wake up in a morning or even making a coffee or tea !!and pass it on to your partner as I did cos my partner tuck it really badly and crumbled a quite a lot as they are going through this journey and almost feel helpless but now we go to appointments etc with renewed hope and positivity we still have our moments as iam sure your guys will, it was discussed about maybe not being able to have an operation the floor just disappeared before me but thankfully the FLOT managed to shrink my tumour at my GOJ , unlike your partner I had an Esophaejectomy so part of my stomach and part of my esophogus was removed and made in to a new esophagus I’m post 4 weeks out of hospital but I was in there for 3 months for goodness sake’s I had a lot of great nurses looking after me and I’m doing ok eating stuff I thought I would never do again happy days :) but above all the key to this journey we are all making no matter where this nasty disease likes to make home in our bodies is be positive ,be carm  with your thoughts, and give this disease some attitude,PMA !!!

I’ll sign off for now bed time for me but take care Daisy 100 and sending you and your partner all the very best wishes 

x Desi B 

Thank you! It’s so nice to hear positive stories! 
We had a call this morning and looks like there is going to be a pre op this week so fingers crossed! They are very shady on the phone and don’t like to give much away until the appointment which is hard as we seem to overthink!

Why did you have to stay in hospital for 3 months? He would absolutely hate that!! 
glad you are doing well and I hope the chemo is kind xx

Hiya Daisy 100

your very welcome I find it helps to stay as positive as possible,my stay in hospital for 3 months was because of a leak which was at the junction where they joined my oesophagus and stomach together I think they call it an anastomosis leak,this is rare I’m told and only happens in a small percentage of patients so I wouldn’t worry too much as it was  just  a longer stay in hospital unfortunately and  your correct I really hated it but all the nurses were really kind and tuck care of me,they do seem a little shady on the phone as you say and again as you say they don’t like to say to much over the phone I think it’ was pretty much the same for me I remember,I’m sure and hope everything will be good for your partner and  try not to over think things hard at times I know this from experience but things do get better and remember your PMA and thankyou for your words of hope  for my chemo fingers crossed it will be kind to me.

x Desi B

Thank you. The fact they say nothing on the phone makes you so nervous. I can’t see that many people are happy with all the waiting, if we knew the entire plan I think we would feel so much more in control. As they also won’t discuss it over the phone you have no where to get reassurance from. (Not that they ever say anything promising) 

it just feels like the whole journey is pretty negative, I wonder how people mentally cope as I am not x

The problem with the waiting and unknown is.naturally we think of the worst and so misread every sign for the worse.

I have tried to deal with this by only thinking one day at a time, and when at times I feel better make.most of feeling  a bit normal to keep me going.

Otherwise I will go.mad.Also accept we will have many down days that is normal.

Take care