1 year post op

Hi Sarah,

I’m about a year ahead of you. At the end of next month it’ll be 2 years since my Ivor Lewis. As a former teacher myself, I cannot believe that you are back to full time teaching! There’s no way I could manage that even now. Fortunately I was already retired by the time cancer reared its ugly head! Are you sure you haven’t rushed back to work too soon? Recovery from this op is measured in months and years. I can’t help you about the coughing as, although I did suffer with this for months after my surgery, things have been fine since. Recurrence is, of course, always a worry but I think you just have to make the decision that, having been given a second chance at life, you just need to get on with living and make the most of every day. Whenever I started my OG cancer journey back in Oct ‘23, I met, on this forum, a man called Dean (who went by the tagline Grandad65). He was a couple of months ahead of me and was so helpful and encouraging as I battled my way through FLOT, surgery and all the issues they presented. Many others will say the same. He passed away last February after his cancer came back. In his last post on this forum, announcing his bad news, he said “the rest of you keep fighting okay” That’s all that any of us can do - keep moving forward, getting on with life, having new adventures and making new memories - without continually looking backwards worrying about what might be. Although I never actually met him, I know that this is what Dean would want us all to do. If you are financially able to cut your hours at work - do it. Go on holiday (I am currently in Tenerife until the middle of March), take up a new hobby, go for walks, cycle rides or whatever in the fresh air. Spend time with loved ones - family, friend and pets. Enjoy every sunrise and sunset. You’ve been given a second chance. Make the most of it. 

Hi Sarah. Welcome back to the forum. From what I have been told and of course I am no medic then if you are now 12 months down the road from your Ivor Lewis with good scan and endoscopy results then your survival odds will have now increased dramatically. CB is so right in everything he says about grabbing that second chance. You are doing remarkably well if you are back working and you deserve every praise. I can imagine that the work situation must be very stressful whilst you are still in this recovery mode.

Also I have been told by my MDT that a significant % of Ivor Lewis patients cough when eating and also at other times. I certainly have had the problem and also like you I had post op. chest infection plus other complications. If you have not had a swallow test can I suggest you ask for one. Following mine, I now have dilation with my endoscopies and this has helped reduce my coughing significantly. As I understand it, there are two potential areas of restriction namely the site of the join and the pylorus and in my case it is the latter.  My only surprise about your symptoms is that it has developed down the road as I have had my issues with this from the outset. 

I hope you can get this cough sorted. 

hi you guys, your posts ring so true, about making the most of time, we actually got a xmas this year,and got dolled up new years eve, when we went away to a hotel, danced like some one possessed, couldnt give 2 figs!!  jan 8th 2025 was my op date, almost pinch myself how far myself and husband have come when this little shite came back, still remember vividly how hard the months before the op and after were, epecially mentally, deffo grab the counselling, ours has made a lot of sense and helped explain to my husband, how and why i react how i do, and how we can just learn from it, even if it means taking ourselves off for a bit seperately, we started counselling when the treatment just ended after the masectomy, we just thought wtf just happened, only to be back on the train when oesophogus cancer joined the party, our counsellor emily is cancer trained, and brilliant, but some friends have tried different ones until they find their match.  also i reached out to macmillan for a cancer buddy, lovely elizabeth called weekly or fortnightly, just an ear at the end of the phone, no judging, listened to me when me and neil were on our knees, when i was feeling normal, and when i was also anxious.  deffo recomend giving the macmillan line a call.

i started getting signed off monthly, and my gp was like, you are not going back to work any time, physically and especially mentally, so we are doing 3 monthly notes, so take it carefully going back, and listen to your body.

thinking of you lovelies starting this poxy journey, missing the ones like our lovely dean, but god it does make you think like cb said, grab it, do it, buy it, book it, enjoy it, 

love to you all jules x

Hi Cool Blue 

thank you so much for your reply it’s truly so. appreciated. 
we have certainly changed our outlook on life and know for sure this is a second chance at this crazy world we live in. 
when I was diagnosed and had to leave my job my mindset was that I would return no matter what for the start of the new school year - it was the goal I so needed to achieve and I did it! Going back on phased return and slowly building up to being to full time. It is so exhausting especially as I teach send pupils with autism but I’ve done it and I couldn’t be more proud of myself. 
since my recovery we have done so much more than we would have before this and I ticked off doing the Boxing Day sea swim in wales which has got to have been the most exhilarating experience for me since this journey started.wow Tenerife till March how brilliant is that enjoy every moment, which no doubt you will 

much love Sarah x

Ah thank you so much for replying- I did a swallow test after the op but think I will ask next time when I’m at hospital to see if it’s something that can be looked into. 
going back to work was a goal I so needed to do and I’m so thankful for that. I know I need to be more positive and I’m sure the % of survival must increase as time goes on but all I ever here is lets get you through this first two years and then take it from there! So any positive feedback from here is so appreciated.

sarah x

Cool blue - probably the most inspirational post I have read on here. I remember dean too he was so kind and helpful and full of hope. I think of him too. He would be saying exactly that. Get out there and enjoy it all. Thank you for the wisest words. Enjoy Tenerife and I was really pleased to read your recent scan was good!  

I too am living my life under the surveillance of 3 monthly scans.

However unlike yourself I know 100% that my disease will progress as I only had a partial response to my treatment. I was unfit for surgery.

I don’t know when this progression will be and I don’t know how it will affect me. But one thing I am determined is that until this happens I will live my life to the full.

Do not let this disease dominate your thoughts and impact on your quality of life. Especially in your case when there is still hope you have been cured. 

Rosiee thats so inspirational, i truly feel for you, especially with the 3 monthly scans and the vein saga.  Some days its hard to be on top of it, but the days you can, like you said just do what you want and enjoy.  We wasted so many days when we were in such a dark place before and after the op, regret that, but it has made us grateful for the good days we get to have.

take care, sending hugs, jules

Sarah how good to hear from you. I have wondered many times how you were doing as I was so grateful for your encouraging words some time ago. Chris, my husband is eight months post op and he does cough a lot not just when eating. He is also being scanned three monthly as post op histology wasn’t as  good as scans had suggested…… we try very hard not to think about what might or might not happen but totally understand how hard that can be. Personally I’m euphoric after a clear scan (two so far) but petrified in the days before the next.  My husband is simply grateful to have a chance …. last Christmas he questioned whether he would even see another. What you have achieved is amazing ….. we were told the accepted recovery time from surgery is eighteen months so you are well ahead. Don’t exhaust yourself too much though … as a former teacher I know about the work load and hope your school is totally supportive. 
sending love and the best of wishes

Geraldine

hi Sarah I did reply to your post as I think you posted it twice but it’s good to hear from you ! Sending my love and best wishes xxx