Hope & good news stories please

Hi Bob, see my earlier reply. Your right about everyone's journey being a different experience. While I was sent home on day nine, another friend of mine who I met on here and ended up in hospital with was in for several weeks because of infection, pneumonia, and a leak that didn't heal quickly.

If you click on my name above it will take you to my journal/blog/diary. This may help.

At around day seven, if you have no leak at the op site you will be allowed to drink and eat purreed food..... Lovely....lol. To be honest it's all you can manage initially.

After getting home is difficult. I had my op through one cut around my shoulder down my back and under my left breast. 55 Staples. Getting comfortable in bed is difficult. I couldn't lie in my sides so just lay in my back propped up. I'm lucky to have an electric adjustable bed. A hot water bottle and plenty of pain killers helped me get some sleep but it was generally and hot or two then waking up taking more pain killers and going back to sleep for a couple more hours. And so on.

I am 5 months post op, 2 months post 2nd FLOT chemo and am feeling really well but get tired easily. Getting used to eating again is difficult. I feel full very quickly and feel nauseous after. I still have an issue with poor taste and lack of appetite. Generally I am eating very small amounts quite often and drinking small amounts throughout the day and night to keep hydrated. I was a big lad at diagnosis last march (23.5 stone). During the journey I have lost 7.5 stone. I seem pretty steady now at around 15 stone. I'm not worried about losing so much I actually feel better for it. Just need some new clothes...lol.

Take care.

Geo.

My husband was T3N3M0 at diagnosis in December 2023, after the op they upgraded the staging to T4aN2M0. He has had the FLOT chemo, surgery and FLOT chemo. He also had chemo radiation over Christmas and New Year just gone. He is back at work (he works from home) and eating well. He still has discomfort at his scars and we have an adjustable bed which stops any problems with lying flat, but life is slowly returning to normal (fingers crossed). We just have to make the most of every day as we don’t know how long we have, T4 survival rates are poor and it was also very aggressive. We have plans to go to the States in May as well as some other short trips planned for later in the year. You have to make some plans even if they don’t happen, the joy of planning and looking forward to it are worth it. Currently reading Deborah James’ book ‘How to live when you could be dead’ and finding it helpful with where we are on the journey. Hope this gives you some good news. Take Care, Steph 

Hi there,

I am Geos friend that he told you about!!

was diagnosed last February 7th to be exact….. after camera, ct scan, pet scan, laparoscopic staging. Diagnosed as T2N1M0 had 6 rounds of flot chemo. Was meant to be 4 rounds then op then another 4 rounds. But we wanted to try to get on holiday before operation….

after the 6 rounds of chemo I had scan and they told me tumour had shrunk slightly, was 3cm to start with.

had operation and was told all had gone well. Took 75% of oesophagus and 18 lymph nodes.

was in hospital 10 days and getting ready to go home when I was having trouble breathing, ended up in itu they put me into a coma for a week. I had sepsis and pneumonia. And putting me in a coma was the best way to treat me. After that ended up in intensive care for a week then in a room on  a normal ward. In total 33 days in hospital. The histology came back really good, zero cancer in any of the lymph nodes and zero cancer in the oesophagus!!! So the chemotherapy had done a great job!! So good a job the oncologist said it was the best response she had ever seen! 
so she wouldn’t give me any more chemo!!! So I had a bit of a hard journey. But the results are better than we ever expected.

life after the operation is “different” I can eat pretty much anything I want as long as it’s a small portion. And I eat pretty slowly. Except bread. Bread isn’t a good thing for me. I eat danish bread toasted and that’s fine. 
sleeping is not too bad just need to keep head high. Sometimes I get really bad acid come up during early hours and that’s horrible….. but most nights sleep ok.

above all I am thankful to be here a year after being diagnosed…..

if anyone wants to talk or ask any questions myself or Geo im sure will help as much as we can! 

Ade

I am currently 3 months post op and into the next cycles of chemo. Twelve days in hospital mainly due to my consultant surgeon not wanting to discharge at a weekend. It seems my recovery from the op has been remarkable according to the medical peeps. Eating was tricky after discharge and I cannot manage the portion sizes in most restaurants. Mushroom risotto in Zizzis is on the money though. I purchased a wedge set of pillows from Amazon and sleep with my head up. Can sleep on either side, maybe as I had minimally invasive robotic surgery. No big scars although around 20 puncture wounds across my back and front. The histology from the surgery was positive which is good. Able to walk as before and at a similar pace @3.5 mph.

i have come across people who many years post op one even 30! Hope springs eternal! A positive attitude and keeping fit are important going into the treatment and thereafter.

Currently on Lansoprazole for reflux and have been told this is forever as well as daily multi vitamins. Chewing food loads of times necessary.

Hi 'Grapejuice'

I haven't been on the site for a while as I'm very happy to say that in April I will be 7 years post diagnosis !

This Macmillan forum was so valuable as I went on my journey, and I'm pleased to see you reaching out for positive stores and positivity against such a challenging time for many 

My initial staging was T3N2M0 and post initial Chemo registered as T2N1M0.

As we entered this new world of treatments and new medical terminology I decided with the help of my daughter to create a very simple A-Z blog of what I learned along the way - in a bid to help anyone else who may take a similar path.

Full details can be seen here  https://myoesophagealcancerjourney.wordpress.com

Please note to see the whole A-Z details, press ' older posts' at the end of each page

I was told in the very early stages ' a positive mind set (as tough as it maybe) can be more than half the battle ' ....

I'm just back from the gym , at age 58 I feel fitter than I have in 20 years !!

Best of luck with your journey - feel free to reach out and ask anything at anytime. There are some wonderful and supportive people here x