Looking for positive outcomes

Hi kirsty

I wanted to drop you a note. my friend was diagnosed in May 2024 he had flot - december op - flot

he was the same stage as you post op - they found a few lymph nodes were infected - 2 out of around 40 I believe. He was worried that there might be more left but so far so good.

He is doing well. He eats fairly well and is planning holidays. He still gets very tired but he is back to enjoying life.

He has had 2 x 3 monthly scans now and both are clear. It is fair to say he lives in 3 month blocks with the scanxiety.

I think re-occurrence is a worry of course but I would suggest taking it a day at a time.

Someone wise said to be you could worry about something that might not happen and that might be the case, There are people on here who are doing well some years down the line, I hope they reach out to you.

I think the mental health implications of going through this both for the person and the family should not be underestimated and its important you have as much support as possible. xx

Hi.

Thanks for this it is reassuring to hear your friend is doing well and I hope he gets a fantastic holiday booked aswell.  You are right, the mental side of it is hard, in some ways I feel like it's harder than the physical side, at least the physical side you can try different things to help but mentally it's hard to escape from.   And again you are right, I don't worry about having an accident every time I go out so I need to try and do the same, just think of the now not what might/might not happen.  Thank you!

Hi Kirsty there are a lot of positive outcomes on here !  I’m only just 3 months post op so don’t know if I will have a reoccurrence but if I do then I do ! And I don’t spend my days worrying about it I know you have a young family which makes it hard not to worry. But in my experience on this sight there are more success stories than not ! Take care and try not to let it get you down Tricia xx

How are you finding it after the op? Have you more chemo to do?  Thanks for this, it's just so scary all the unknowns and I keep telling myself it's one step at a time, get the pre-op chemo done and then hopefully try and plan some family time before worrying about the op/chemo and anything after that (the operation terrifies me but I know a lot of stories on here have all come through it so I will too). Maybe because it's taken a bit longer to get my energy levels back this time and ive not been out as much it's just triggered me into overthinking things.  Need to plan more visits and activities for next week after round 4!x

I am amazingly lucky that I feel great ! And count my blessings and hope it will stay like this. I have been supported each step of the way by the hospital team and my family! Apart from the fact that I sleep raised up and I now have short grey hair I feel no different in fact I think I am healthier now than before lower weight lower blood pressure and no fatty liver !! Get out and enjoy your self before the operation and try to get as fit as possible as this really helps your recovery ! My surgeon said you wouldn’t run a marathon without training and when you’ve had the operation you will feel like you have run a marathon for the first few weeks and he was right xx

That's fantastic!!!  I hope I have the same results and your positive attitude too.   I was going to try and get back on the exercise bike but i haven't managed yet. I think once this round of chemo is done I'm going to make a proper effort with walking/exercise bike to help build myself up and im also now just trying to eat better (there has been a lot of sweets and rubbish in my diet to help put weight on that I lost after first round of chemo).  X

Hi Kirsty,

Firstly well done for making it through your pre-op FLOT relatively unscathed. Personally, I found cycles 3 & 4 pretty tough going but my swallowing difficulties actually improved even after the first cycle. I hope my story will offer you some reassurance about the road ahead;

Diagnosed Oct ‘23 (age 59) after experiencing a ‘lump in the throat’ feeling from end of Sept. Underwent endoscopy, CT and PET scans and laparoscopy in Oct/Nov and commenced chemo in mid December. Surgery on 29th Feb ‘24 and completed post-op FLOT last June. Since then, recovery has been slow but steady. Like everyone else, I lost some weight and a lot of muscle tone. My butt disappeared altogether and sitting on hard benches became impossible. But over the last 12 months, I have put weight back on (only a few pounds now below my starting weight) and, through exercise (walking, cycling and some weights/resistance exercises) I have recovered my muscle tone and, generally, I feel pretty good. I wouldn’t say that everything is back to the way it used to be. It isn’t and I suspect it probably never will be. I get tired easier than I used to and often go for a wee lie down in the afternoons. Meals are small portions and I try to avoid eating after 8pm. I sleep with 3 pillows to try and prevent reflux. Life is different but it is still good. My wife and I still eat out in restaurants (I have a starter or ask for a small portion), we have been on several holidays (including a 31 night S. American cruise which we booked in December ‘23 - just 2 days before I started my first chemo). We have a 10 week holiday to Tenerife booked for January and another 34 night cruise planned for 2027. Recurrence is, of course, a worry (as it is for every other form of cancer) but I choose to get on with living life and enjoying every day as much as possible. You have completed the first part of your journey. The next part is certainly scary but, by the end of next year, it will be all behind you and you will hopefully be enjoying the new lease of life that you have been offered. Hang on in there. CB