Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Thanx both, 

yep, the difference with the cough happened immediately- incredible. So maybe ,finally,  we can move on. Don't get me wrong, we are vvvv pleased that no dodgy bits, but the cough was driving him (and me) MAD. Fair play to the unit though, they just got on and sorted it.

At the moment we are watching 'For a few dollar more' - I love it especially the score/music. He is pain free and moaning about how itchy his bullet wounds are ......, not wounded by Clint or Van Cleef (:

He was on free fluids straight after op yesterday and got to eat by evening, light diet one might think- er , nope not him chicken korma followed by jam sponge and custard!!! No beer though as hospitals are, as yet unlicensed (:

Millie- you absolutely Enjoy Tenerife- warming the bones and not cooking (:! Is gooood for the soul.As is 'curative' beer (: 

Lee- let us know any updates

Keeping the faith

Hilts

Hi Hilts /Milly, back end of next week...feeling positive but very uncomfortable...just planning everything as best we can so we'll all be ready.

Lee

Hi Lee,

I think how you are feeling is perfectly normal. I felt a mixture of relief that the big day had been agreed but also trepidation.  Remember they are highly skilled professionals whose vocation is to help patients. This op is big so they don't do it unless they think that

a) the patient can tolerate it and

b) they feel it's worth putting the patient through the operation.

Hang on in there and if your dad is aware that you are part of this group please send him best wishes that he has a lot of fellow patients and their relatives routing for him.

keeping the faith for everyone 

Milly

Hello,

Dad has been given new date of next week too, I completely understand how you are feeling Lee. A little helpless but also remaining positive that this is a massive win in the next stage of beating the OC!

I hope all goes well with your dad and I look forward to hearing about his progress!

Hilts - great news on your hubby! Yourself and other have inspired me with your stories over the past 6 months! I talk about your stories to my dad like I know you personally!!

My husband was diagnosed same staging as you in July.

how are you doing?

T

Hi I've been following these threads with interest as I was diagnosed with OC in June 21 

I went through the initial four rounds of FLOT then had my surgery on the 9th November and I'm now 8 weeks post surgery 

I went home after two weeks but was readmitted a week later as my wound on my back became infected and once that happens they begin to suspect a leak, however thankfully that was not the case but meant I was on fluids longer than I would have liked, I managed to get home just before Xmas and I'm recovering well.

Diet wise I'm on soft and trying to gauge the size of my stomach which is trial and error, my appetite is good and I've began to put on some weight as I'd lost around two stones after the operation.

exrecise wise I'm managing to get out and walk around 2 miles a day, intention is to increase this to 4 with the help of my beloved hound.

ive a follow up appointment with the surgeon coming up very soon, I met him in hospital and he said "we got it all, it's all gone, excellent margin and we removed two LN" he did not mention any follow up chemo so was wondering, do they offer this to everyone or is it case by case? 
 

best wishes to all on this group and their individual journeys, just by reading it has helped me on my journey

regards

Tipo 

Hi Tipo,

Firstly as we all say welcome to the group. It's not one you would choose to belong to but I'm glad reading our posts has helped you through an extremely difficult time in your life.

In answer to your question 

My understanding is the usual procedure is FLOT/OP/FLOT.  The second FLOT is usually given within 12 weeks of the op. If you've read my posts you will know my husband's journey took some unusual twists and turns but he was still offered FLOT at 12 weeks post the Oesophagectomy and 5 weeks post VATs decortication on his left lung.

Some choose not to have it and Andi recently posted she wasn't able to have it due to her complications following surgery.

You sound like you are recovering well and are making the most of being able to get out and walk. My husband is now upto 5 miles walking. He had his fIrst op (Oesophagectomy) on 4th May. Third op on 1st July. He was unsure whether to have post op FLOT due to everything he'd been through but was offered it and advised it was worth doing so he had it. His pathology results were T2 NO MO and surgeon said they got it all with good margins. 37 LN removed all negative. The actual op was text book. 
As we all say it's up to the individual and the Oncologist is the best person to advise. My husband said it was harder the second time but he completed it. We are off up the peaks next week which is amazing after what  he's been through! Everyone on here has their own story but this thread has been a lifeline for me as the onlooker.

Best wishes and if you feel able to please post an update. We all care about everyone on this journey even though we've never met.

Keeping the faith

Milly

Hi Tipo

i couldn't agree more - this site has been SOOOOO helpful - everyone so positive. I'm sure your oncologist will soon be in touch re post op FLOT. I was in hospital for 10 weeks and it's now too late for the chemo. I would have had it if offered as of the 30 LN removed - 5 were affected. But I'm sure they got them all. I can just about walk a kilometre - trying hard to improve but my lungs are not good - need to be able to walk to the relevant 'gate' at the airport when I finally book a holiday!!!!! 
 

Keep the tips and ideas coming - and keep walking

Andi xxx

Hi we are in similar position. Our son who is 37 diagnosed with oesophagus cancer. Just finished 4 rounds  of flot chemotherapy and had ct scan now told it has spread to his spine but they think it may have been there all along but didn't show on the pet scan. They now say can't operate on the oesophagus even though it has shrunk. Now looking at palliative care. Absolutely devastated. 

Hi meltra44,

I'm sure being devastated doesn't cover it as it must be such a shock for your son, you and your family. 
As I have learnt Palliative care isn't end of life. It is about controlling the cancer. There are folks on this link that know more about this than I do but there are patients who have lived with the disease or found the treatment has stopped it. The upper GI nurses are a great help and Macmillan nurses were a great help to me too. No one can tell you how to feel but talking to someone who has more understanding of your situation does help. Others on here have used Maggies who are attached to some hospitals. 

Also Cancer research have nurses too who will help you. We on here are not medical experts and all have different experiences of a similar diagnosis at various stages. Ask any questions and we all try and help.

keeping the faith for everyone 

Milly

Hi meltra44,

I'm sure being devastated doesn't cover it as it must be such a shock for your son, you and your family. 
As I have learnt Palliative care isn't end of life. It is about controlling the cancer. There are folks on this link that know more about this than I do but there are patients who have lived with the disease or found the treatment has stopped it. The upper GI nurses are a great help and Macmillan nurses were a great help to me too. No one can tell you how to feel but talking to someone who has more understanding of your situation does help. Others on here have used Maggies who are attached to some hospitals. 

Also Cancer research have nurses too who will help you. We on here are not medical experts and all have different experiences of a similar diagnosis at various stages. Ask any questions and we all try and help.

keeping the faith for everyone 

Milly

Hi milly,

yes you're right feel so helpless and it's still sinking in I think. The spread to his spine was so unexpected as no sign of it on the pet scan before chemo was started. The surgeon is baffled by it as surgery date was all set for the op on his oesophagus,  this is no longer an option so waiting to hear what the next step will be. Suggestion of maybe a clinical trial so will wait and see. So good to actually talk to someone who knows what I'm talking about

Hi all,

I feel I need to express our thoughts are with all the Ukrainian people and those who are fighting their own battle with cancer in this terrible situation. 
 

keeping the faith for everyone 

Milly

Yes, an awful situation for innocent people...I keep saying things can't get any worse for the last 2 yrs...but somehow they do 

Hi everyone,

Just checking in after a week away in Yorkshire for my husbands 64th birthday. Our family came too so very special after all he has been through. He managed a few pints Hilts! How is your husband doing? Hopefully the cough is no longer such a problem after  'the stretch'! 

Lee I hope you and your dad and family are able to enjoy the sunshine and the pesky kidney stones have passed.

I think of everyone often and I hope reading some positive outcomes helps those on this path.

keeping the faith for everyone 

Milly

Hi Milly !

Happy 64th Birthday to Mr Milly !

Sounds like a lovely celebration and must've been really special having everyone together after everything everyone's been through with lockdowns, covid and the roller coaster !

Hi Milly, good to hear you've had a good break.

Unfortunately we have bad news. After a few weeks of my Dad constantly trying to be sick (only phlegm coming up) and not able to eat or really drink (except ice cubes), we ended up in emergencies a 4 times. The last time the CT scan showed although Dad has kidney stones, a new large tumor is causing the obstruction and this is the reason for not being able to swallow and constantly trying to vomit.

Worse than this, the oncologist has now said there's nothing more they can do and have said Dad is best being kept 8n hospital and we are looking at weeks.

Completely distraught and feel like we've all been ripped apart from the inside out.

This last 2 years has been worse than a nightmare.

My Dad is now on morphine so Al least he isn't in any pain.

Lee

Dear Lee

i truly am so very sorry to hear this devastating news. Your dad, you and your family have been through so much this last two years.

Just writing about your dad's situation must be so very difficult. My heart goes out to you all. Having lost my mum who was 51 to cancer I can empathise but no one truly understands how another person feels at such times. I hope you and your family have support too. We,in this group, are here for you even though we haven't met I feel I know you and care about you, your dad and family. 

still keeping the faith for you all in extremely difficult times 

Milly  
 

Dear Lee

So sorry to hear your sad news. Words are not enough

Andi xx

So sorry to hear your news,  Lee.

God bless you all.   

Snaggie

Sad and sorry too, to hear this mate.

Keep being the amazing rock that you have been for him on this journey, I've no doubt he is immensely proud of you Lee.