Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Hi Milly,  thanks for your reply.  Unfortunately there isn't really a team in place (I get the impression the NHS is really good at offering a team). We don't really get much help or info from anyone except for the oncologist and that's very limited (I think some is due to the language barrier and also its probably not as supportive as the NHS). We were disappointed about the OP not being curative but it's still an improvement to where we were before. 

Thanks 

Lee

Hi Lee,

It's definitely good news overall and being offered the operation isn't something that they do unless they feel it will be of benefit to the patient. They have to tell you the reality because it is such a mahusive operation. Pneumonia is a fairly common complication but they  antibiotics to try and prevent it. As you know my husband was doing fantastically well until a week later when he became critically ill and nearly died. However others on here haven't had any major complications and were home in 8 -10 days. It's not an easy operation for anyone but there are survivors.

There are also some who have lived for several years on palliative treatment. 

keeping the faith

Milly
 

Hi Milly, I just wrote a long reply but lost it, drat.   Have been away all last week for work again, which was good.   Got back to find husband much improved!!  No major crashing after eating!!   What a blimmin relief, I could hardly believe it.   He ate two thick pieces of toast this morning smothered with butter and marmalade.   Even I had indigestion just looking at it.   I was just staring at him in disbelief!!!   I hope Kev's scan goes ok.

[@Hilts]‍ sorry to hear about your husband's hernia,, yes you could really have done without that, but let's hope it goes smoothly as it is a common op unlike the oesophagectomy, and pray it helps with the coughing problems etc.

[@Andi1947]‍ we are all thinking of you and keep on keeping on (huge virtual strength giving hugs)

[@leechap]‍  a hugely tough decision to be made by your Dad.   It's a difficult operation for anyone to go through, and the surgeons have to make sure the odds are known.   As Milly said some people have survived for years after and others on the palliative route have also made years.   He will have your support whatever decision he makes and that is hugely important.

[@bfg]‍ hope all is going ok and [@dooggreg]‍ so good to hear from you.   I also worry about the people that don't post any more.

SallyX

Hi Sally,

So great to hear such good news! That must have  given you both such a huge boost! Thanks for replying  and your good wishes for our meeting. 
 

keeping the faith for everyone 

Milly 

Hi everyone, 

I'm new to this forum. My dad was diagnosed with oesophageal cancer in March 2018 and has had chemo and RT. He was sadly unable to have surgery. He had a stent put in in April this year, but within the last month swallowing has become very difficult with him vomiting after most foods and he's lost weight and the community hospice team are involved. He had a barium swallow done last week which showed 2 areas of narrowing within the stent and they said they might be able to put another stent in to stretch it out or something? Just wondered if anyone in this chat has had a oesophageal stent replaced or re-stretched? If so did it help? 
 

Many thanks, 

Rachel

Hi Rachel,  I am so sorry to hear about your Dad, and know how much you are suffering.   Oesophageal cancer is a horrible difficult cancer to deal with.   I can't give you any advice I'm afraid, but lean on the hospice care team and ask for their support, they are the best people to help you at this time.  If the team think the stent will help then at the end of the day it is your Dad's decision if he wants to try it being replaced, and you can only support him and his decisions as best you can.  
Sally X

Hi Sally, 

Thanks for your message :) 

It is such a horrid cancer, so cruel! I think they are talking about him in MDT meeting tomorrow so will wait to see what they recommend about stents etc. 
 

Many thanks

Rachel x

Hi All,

Sally - I'm doing great :-).  I too have a love of toast, with lashings of butter and marmalade.  My other half looks on in an amazement on accasions.  I would say that my fitness levels are improving - still not up to pre-diagnosis levels, but working on it.  My weight is still stable - has been the same now for nearly 4 months, for which I'm quite pleased with considering my jej tube didn't last before being discharged post-op.  GOG mode still clicks in - but I've ran out of excuses and am putting it down to the fact that I'm probably a grumpy-old-g't anyway.  Hope your hubby is coming out the other side now of FLOT ii - the revenge.

Rachel - sorry, I don't know much about stents other than what they are supposed to do - but I guess like a lot of things there are a number of options/strengths depending on the need.  Hope he is doing ok.

leechap - always a difficult decision, made more difficult by the varying "odds" that get thrown around. Even for those who are given the flot/op/flot "curative" path - the odds that we will die from the disease are 30 - 40%.  The odds of the surgery complications yu have been given are about "normal".  There are odds as well for palliative care.  I guess at the end of the day, it's down to the quality of life that we have left and judging that against what we perceive to how much we have left.

Andi - sending big virtual hugs your way!  

Milli/Hilts - best wishes as ever to you and yours!  Is there a date for the op yet?

Thanks for the reply bfg.

Lee

Hi All,

Well... my husband had the appointment with the Consultant Oncologist yesterday afternoon. The CT scan showed all good - no signs of anything other than surgical changes to his 'plumbing'. Yippee! Also his left lung is now 95% which is brilliant! It was around 75%. after the VATS and decortination in July. So all in all the best news we could hope for! It was exactly a year to the day that he was told the diagnosis after the endoscopy. So we are now looking at travel insurance- so any tips welcome! I hope this gives hope to others. 

Bfg - good to hear you are making progress. It's a very long and bumpy road but knowing others are travelling with you who 'get it' helps somuch. 
 

Rachel I'm sorry I also don't know much about stents but the cancer team should help and I found the Macmillan nurses helpful. I hope they can help him with his swallowing, it's such a horrible disease. 

Everyone I hope you are trucking along and still thinking of those who haven't posted in a while.

keeping the faith for everyone 

Milly

Hi All,

Well... my husband had the appointment with the Consultant Oncologist yesterday afternoon. The CT scan showed all good - no signs of anything other than surgical changes to his 'plumbing'. Yippee! Also his left lung is now 95% which is brilliant! It was around 75%. after the VATS and decortination in July. So all in all the best news we could hope for! It was exactly a year to the day that he was told the diagnosis after the endoscopy. So we are now looking at travel insurance- so any tips welcome! I hope this gives hope to others. 

Bfg - good to hear you are making progress. It's a very long and bumpy road but knowing others are travelling with you who 'get it' helps somuch. 
 

Rachel I'm sorry I also don't know much about stents but the cancer team should help and I found the Macmillan nurses helpful. I hope they can help him with his swallowing, it's such a horrible disease. 

Everyone I hope you are trucking along and still thinking of those who haven't posted in a while.

keeping the faith for everyone 

Milly

Hi Milly, really good news to hear:happy:

get that holiday booked!

lee

Thanks Lee! I hope you are getting some help with your dad and the options available. 
 

Keeping the faith

Milly

Hi Milly

That is great news indeed, and funnily enough I've been making a couple of casual enquiries too following some other threads on this site, just to see if I was "insurable" so to speak.  

I came across Staysure travel who went into detail on the condition just on the on-line entry and it provided me with a price for an annual policy.  I haven't dared try my wifes yet - it'll probably explode.

Let me know how you get on with it - as I'm quite keen to start travelling again soon.  Hilts may have some expertise too following her and hubbys travels.  :-)

cheers

bfg

Thanks Bfg,

We have got insurance with our bank and they will insure everything apart from the Oesophageal cancer, my husband has just contacted them. So I suppose we need to weigh up  the risks and cost of holiday versus cost of insurance. Not sure if any cover the cancer as we haven't looked yet? 
Will let you know, we did pick up a leaflet from Macmillian but sometimes recommendations from people in the same situation are very helpful.

keeping the faith

Milly

ps we have had cards up in our house for a long time (a few for nearly a year!) so these are being taken down as a milestone moment - everything crossed. We also went to the pub for lunch today (they did a small plate carvery) which was ideal for my husband and ... he had a pint! 

Small carvery plate and a pint sounds perfect Milly. He must've been as happy as Larry with that ! I can't wait to get back into a carvery pub and try that. 
 

Lee, my two cents for what it's worth is throw everything at it and do all you can to get the best possible outcome with no What Ifs - so go for the op and tackle it head on with brute force !!

Hope everyone else is keeping on trucking and OK.

Andi, we are still rooting for you !!

Hi Redski, thanks for your reply and yes I think you're right.

Lee

Has your Pops made a decision yet mate, or still working through it all and the options ?

Yes he has decided to go for surgery- we have an appointment with the surgeon on Wednesday,  I guess to tell us the date and go through last minute plans.

Lee

Really encouraging to hear Lee, keep being a rock for him and getting him through - you're doing an amazing job.

Thanks mate, really difficult as everyone knows...literally take 1 day at a time.  Thanks for your reply. 

Lee