Hi,

Ive just been directed onto this thread, not even sure I'm posting correctly ‍♀️
anyhoo, I was diagnosed with stage 4 oesophageal cancer in 2018, mts to lymph and liver (4), told I'd probably have 5 months no treatment, 11 months with, fast forward 2 years and 7 months later I'm still here. Various lines of chemo later, my latest scan CT and MRI have shown that there are now only two mets in the liver, one 11mm and the other 10mm, nothing in the oesophagus or lymph nodes. So from being definitely not operable they are now offering surgery. I have a zoom consultation with the Prof on Wednesday so will find out exactly what's on the table as it were! was 56 years old female when first diagnosed, non smoker and didn't drink, only symptom was food getting a bit stuck! 
ive read all the threads to this and must say I'm pretty trepidatious about the surgery but as it is potentially a game changer, I'm not going to refuse it.

hi Tabnabs

Wow thats quite a different journey to most of us on here and very encouraging to all those starting a stage 4  diagnosis  , us mere stage 2 mortals who have been treated over a year should count ourselves lucky , well i do anyway as i am 95% ok and cancer free now , its great to hear you are on the curative path now and i am sure everyone will be delighted for you , never worry about the surgery that is the easiest part and easy to cope with , i look forward to hearing  from you on here as you progress towards your cure , take it easy and god bless everyone on here.

regards

Douglas

Hi has anyone diagnosed stage 3 to fragile to have treatment. My uncle isn't wanting to eat anymore and he's sleeping all the time. He survived Covid in Feb this year and now under palliative care xx

I love him so much, suppose I'm feeling a bit helpless and wondering if there's anything I can do for him to help

Hi Jocosser

Sorry to hear that , i think your uncles situation is one for the clinicians rather than those of us who post on here ,  by the sound of things he is at a low ebb , you really need to get him eating even if its only milk custard yoghurt or soups , i have met with other patients who were feeding at home through a tube  ask if thats an option , i was fed by tube post operation for six weeks and it certainly helped me recover i know its a big challenge for you and thats really the only advice i can offer at this time , please try and get as much help via the NHS as possible they are the real experts , you take care and stay strong.

regards

Douglas

A massive thank you for thisDouglas, really put my mind at rest, and thanks for good wishes

Gerrie, aka Tabnabs

A massive thank you for thisDouglas, really put my mind at rest, and thanks for good wishes

Gerrie, aka Tabnabs

Hi Gerrie

Thanks and you are welcome to ask anything at anytime , we are all on here to help and share advice or information, you take care now.

Regards

Douglas

Hi all,

Just a quick question please. My husband still has his jeg and he is flushing it daily. He was given some syringes, two aluminium bowls plus a bottle is sterile water. He was advised to use cool boiled water as well. Due to everything that has happened I'm a bit concerned about infection and re using the equipment and water from the kettle. I do 'sterilize' the bowl and syringe with boiling water first. Any thoughts? 
Thanks

Keeping the faith

Milly

Howdee Millie, 

This is a v v quick post- unique for me, just about to leg it into town.

yep, the JeJ......

I think in the beginning we boiled the kettle and filled a clean squash bottle with it to flush through the the day. Any of those water flask type things will do. All the rest of the kit went in the dishwasher on 60 deg. 'Sterile' in hospital means autoclaved at some bonkers high temperature like 400 deg c. We cannot replicate that at home, so what is meant ( I found this out with baby kit) is as 'clean as it possibly can be' and dishwasher is certainly hot enough. I found the stitches around it were more of a pain, prone to getting a bit weepy and scabby, so we put a dressing over that to hold it in place and stop the stitches' pulling on tube and skin

shortermthan usual!

keeping it up and keeping  the faith

Hilts

Hi Milly

I just used boiled water then kept at room temperature in a jug and flushed out the line as directed , the worst rhing was the plastic part the tube passes through keeping that clean , ther seems always to be a yellow wax like substance which builds up and that area gets a bit tender, eventually the stiches fall out but i used to surgical tape the plastic thing back on , when i eventually had almost stopped feeding through the tube it actually fell out of its own accord one morning in the shower , of course i panicked and phoned the nurse who told me that was ok and the hole where it entered the bowel  would close in a few hours , once it's out it does however feel like another leap forward towards normality , take it easy

Regards

Douglas

Hi Doug and Hilts,

Thank you for your replies. He isn't using it to be fed through so it may be easier. It is dressed. On a positive he is eating normal food just smaller portions. Had a small roast chicken dinner today and there is homemade apple and blackberry sponge with custard after he's had a rest if he feels able to have some. Fortifying whole milk with skimmed milk powder and adding sauces to meals when suitable. Today was mushroom! Anyway still not steak, pizza or four pints Hilts lol.

Keeping the faith

Milly

Hi Milly

Thats good to hear , just another point to bear in mind i was told you could also use the feed for hydration which i did as it can help with things like constipation due to the reduced oral intake , not sure if you can use it for bee  , lol ,take it easy.

Regards

Douglas

Okay, back now.

Been to town for daughter 'retail therapy' mmm seems I bankroll it (:. Dinner done, eaten and all quiet on the western front- for 10 mins !

So, indeed , welcome Andy. Although, none of us want to be here, we have all become pretty good at being here - dare I say I quite like coming these days. So through the good and bad, we all pretty much spill 'in private' LOL -I think the anonymity of it is what gives us such freedom.

Bit of an emotional Father's Day for husband today, it is the 1st one post surreal year and he is still here- yay

Anyhows- we are increasing by the day and as I have said many time - we seem to multiplying like rabbits and as common as muck (((::

I am not the victim, my husband is thus, I am the watcher. I wonder if your diagnosis process read like most of us on here. My 56 yr old husband started having  'grippy guts' March 2020. GP = standard omeprazole. Month later, no improvement whatsoever ever and around the same time, food 'clogging ' started. Endoscopy on 29th July endoscopy, official with plan August 8th, stage 2, N0, M0 1st FLOT 5th September, oesophagectomy Op, dec 16th, pathalogical staging Stage 1b, N0, M0-finished post op FLOT about 23 march.  Back at work 10th may.  A whirlwind or what i refer to as a rollercoaster that keeps on coasting!
He is officially 'disease free'  (dare I say for now!)and on the Aspirin trial.

The emotional stuff is almost worse than the physical stuff. We still look at each other and say "what just happened"!!!!. Most of the time we are okay, then out of nowhere, comes a 'moment'. 
I am afraid I have encouraged some bad behaviour in the club, when my husband was so pleased he ate a pie a few weeks post op, and is now over the moon that he can manage 4 pints!!

So please ask away on here, none of us are medics, just very expert  in the 'lived experience' LOL. 
Doug- yep, we did that too, during the post op FLOT, he felt very sick with no appetite, so shoved about a pint a day down the jej, just to keep hydrated until he felt better. Kept the wee like straw TMI LOL

Millie- that is great, in terms of his eating, that is a good load and tasty stuff too- trust me, it only gets better n better, or maybe worse and worse, in terms of having a crack at anything- I think the big thing for my husband was the return of confidence, knowing that the clogging had gone and he wasn't going to be hawking it back, you'll be quite surprised how quickly the four pints will happen.......

Keep the faith

HILTS

Hi Hilts, and all!

We have been quietly 'enjoying' chemo free time, ahead of possible radiotherapy. My husband had a PET scan a couple of weeks ago, to see how his mets on his lungs etc were. We got an ominous call yesterday (fathers day) at 5:30pm, asking us togo in to the hospital today at 9am, as the results were 'complicated'. Needless to say didn't  sleep well! 
 

After a lot of waffling, the doctor announced that my husband is in fact in full REMISSION! Cancer free! 
we just couldn't believe it, and are still in shock, albeit a very lovely kind of shock this time, it just soesnt seem possible after all these months of fearing the worst that he is clear. 
 

I am aware it might come back at some point, but for now, we are celebrating, And feeling very lucky. 
I hope that everyone here gets the same good news too, I wish you all very well and am very grateful that this forum was here when I thought we had no hope at all. It really helped. Thank you x

Hi Daisy

Wow thats fantastic to hear , you can take it easy now and best wishes for the future.

regatds

Douglas