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

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 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

Thank you and I hope you remain well Douglas x

Hi Daisy,

that is amazing news, so happy for you both

x

Wow Daisy that is absolutely brilliant news! So pleased for you both! So good to hear! This will inspire so many others  on here.

Yes celebrate in style. 
 

keeping the faith

Milly

OMG OMG OMG, 

DAISY71!!!!!!
OMG- oh I'll stop now and try and stop the OMG.

That is such fantastic news, I am actually sitting here, all smiling and not quite sure what to do with myself or say.

What you guys must be feeling is probably beyond words. You are probably looking at each other and thinking ' did we hear the doc correctly', is it true etc etc.

Isn't it weird how we have all never met , but such news from us lot is air punchingly good.

I have fences that needs some work- if he's 'bored' like ((((::::

May Shepard's pie remain OFF the menu for many years to come ((::

we all keeping the faith

All my very best wishes

Hilts

Hi Daisy, that's fantastic news, it's so good to hear positive outcomes...good luck

Lee 

Hi Daisy

Just keeping the trend going - that's ffffantastic and brilliant news.  

I'll definitely be celebrating with you this weekend once I stop all my round of meds this week.

cheers

bfg

Thank you so much and everyone else for all your kind comments. We are both still just inshock and disbelief really! But smiling lots! And yes, hopefully no more shepherds pie for a long time.... 

keeping the faith! 

Just to add this keeping the faith thing makes me think of Handmaids Tale ' under his eye!' Lol. 

Jaeof kent

What an absolutely pants day- what on earth can one say to make sense of such a storm. You and yours must not even be able to comprehend or even process what has been said. One thing I can probably say , is that the family tend to 'take it worse' than the actual victim. I don't envy you that task. My husband , after going back to work has had comments like 'oh still around are you' & other delightfully 'happy' comments. I found a few months back a post by Daisy71, about what NOT to say to cancer patients, it was and still is a laugh out loud job... people just can't help themselves......

BUT- there is always one........ There are many on here that are 'palliative' and have been for many years. As I have said before palliative does NOT mean end of the road,check out time ( sorry to be blunt, but I think it needs saying) far from it, it means that they will treat your symptoms as and when they play up. I know someone who knows someone who has 'had it in her bones' for 20 years, someone I do actually know has been palliative for breast/ bone for 9 yrs. A gal I used to work with was given an absolutely awful diagnosis about 5 yr ago, ovarian, bowel,stage 4 &  bone, she retired on 'ILL health' and we all though that was that, BUT , that word again, she was nuked and took some immunotherapy stuff, fast forward 5 yr and she has completed a camper van tour of the US- before Covid ):

You will know from reading this thread that many, even with spread are given 'disease free' status, even when there has been a 'bad picture' at the start.

That is not going to help you today, you are allowed to not be okay- in fact I would say it would be compulsory to NOT be okay. 
Your MDT  will come to you with a treatment plan- just because they can't chop it out, doesn't mean that they can't murder the little f****** another way.

So , I'm not going to say something like 'chin up' etc or be 'strong' OMG what on earth do these things actually mean and look like. Just do what you need to do, cry, scream, shout, whatever for now and see what MDT say for next steps.

Do keep the faith

Hilts