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 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,

Thank you all very much for replying to my first post ,this has been a whirlwind for me and the wife with appointments galore and we have teenagers so in a bit of a similar situation , I have had my Hickman line inserted today ,and seems a strange thing to say but can`t wait for the chemo to start, probably will regret saying that lol, how did you mange keeping the line dry during bathing ?

Greetings Ray B.

welcome to the oesophageal club, no doubt one you'd rather not be in .

What is your staging?

in answer to you question about keeping the line dry. Husband has a PICC. If I remember rightly a Hickman is up near the collar bone. My solution for his PICC was a black bin bag or carrier bag stuck on with gaffer tape!!! Most attractive.(:. I suppose if it is on you're collar bone, just a bit of plastic of any description stuck over it. Your hospital may have some special gadget though.

yep, we couldn't wait to crack on. Now, just finished the first FLOT x4. Nuclear stuff, but honestly after the 2 nd one was eating normally again. Amazing really. 
His pretty much followed a pattern- bit sick feeling on the day, and the day after, but once the steroids were stopped on day 3, felt like he said like the worst hangover in history- what worked for him was just sleeping it off, by day 7, back to normal-ish. He also described it as Groundhog Day!!
surgery booked for 10th December- so fast we haven't had time to dwell on it.

best wishes

hi,

it,s sad to hear about your loss especially after your mum going through the operation i know its difficult to accept your loss especially when you read posts like mine telling others it will all be fine , god bless you and take care of yourslef and your family.

thank you and god bless you and your family

Hi Ray

your nurse should be able to sort you out a large see through stick on dressing i used them on my feed tube and showered no problem , you will be fine on the FLOT although on the treatment days you will be hungry due to the steroids a good tip is to take a stock of sugar free sweets with you and milk shakes , good luck and be patient.

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

Oh that is such an awful state of affairs.

mind you , it could have panned out much worse for us.

Husband went to GP in the March with minor swallow probs and reflux , was put on omeprazole. After a month no improvement whatsoever. It was me that had to be the pain in forcing him to go back- lots of , how do I put this politely- persuasion- he would have been quite happy swilling the gaviscon. I think it was because of my ex nursing background, that something just didn't sit right.At that point the GP referred straight for an endoscopy and the rest as they say is history, and boy oh boy fast as lightning once the endoscopy came up as dodgy, 5 weeks until chemo started.

i suppose I am quite the pain in the ar*e , but this time I am so glad I was.

take care.

Thank you for your message. I already typed out a reply but it doesn't seem to have saved!!! My reason for replying was my mum was offered further flot after surgery this never materialised. There were no further scans or anything in the follow up. Push for checks.. whatever you can get..... when my mum had surgery part of the cancer got away and went somewhere they could do nothing about. Get everything you can and dont settle for anything less than you deserve. If scans and flot had been done after my mum.might still be here. Sending so much love..xxxxx

So sorry for your loss. Absolutely hideous disease. Xxx

Hi .

i did not receive post op FlOT as my tumour was downgraded to a T1 after the pathology and the initial chemo had destroyed the tumour and it was contained in an area less than 3cm i was however given the option but having lost 18kg and the excellent results  posts op  it was agreed it was not really beneficial , i cant fault my treatment and everyone is different , its all about what stage you are diagnosed at , i see my oncologist every month and i am in a very good place now , a bit early to say i am cured but all the feedback says yes , you take care of you and your family and god bless you all.