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

Hi Hilts 

Yes a month post op tomorrow and what a long month its been! Good to hear your husband picked up wk 8, hope its the same for me. How has your husband been after this lot of chemo ? Thats good hes nearly at the end, party planned ?? : )

Thanks for all the support

Ray

Hi Rayb,

A the post op cough. He has it too- really annoying (: it's not chesty, sounds like he throat is being tickled  with a feather ! It improves hugely when on the pre chemo Dex ,so obviously some sort of irritation.

Post op,chemo- Found it tough. He had anaphylactic shock to the 2nd post op oxilatin. Full monty, adrenaline , crash trolley etc but by the time I got there , sitting up red faced in bed (: so today he has last FLOT without the O. He has a very 'active'immune system !
As for a party - mmmmmm , yes we certainly are thinking about celebrating, but we really can't think about what we want to do! - we have been in the double whammy of Covid restrictions & cancer . We are fancying a major holiday, but restrictions, so who knows. He's been back on the beer for weeks!

Did you have the op open or keyhole?. He had keyhole, but the same as you as in icu for 2 days, then home day 8. He has been on night feeds again now for 2 weeks. They decided to leave the jej tube in until after chemo finished. He was losing a fair bit of weight and his appetite was shieeite because of the chemo, so decided to stop further weight loss by overnight feeds. Worked a treat. He's also been shovelling a fair bit of water in to the tube as very dehydrated after chemo. We didn't ask about that, just did it ! Until his wee looked paler (:

You will probably get your final pathology staging soon, so x fingers for you

Anyhow- need to Chuck the kids out for school.

take care

Hilts

Good Morning

Well a bit better nights sleep now ive asked to be back on the Codeine just for the night time dose and it has helped.

Ive had full op : (  or as i call it a shark attack. cut all the way up the front also down part of my back and around the side, stapled and stitched.

They are keeping me on night feeds all the way through till after chemo as theyve said the body repairng its self uses lots of calories, although im eating great at the mo. Not looking forward to the next chemo. just not fit enough yet. Having the catheter fitted for a fortnight really got me down, such a clart on. Then of course ive got pneumonia, they think im over the worst but im very weak as anyone would be, without all this going on.

Next appointment Mon 12th April, for results and to talk about the taking of my appendix and a small part of my lung....maybe there was a take one get one free offer on HaHa.

Your husband sounds like hes doing great,thats marvellous news!  

Fingers crossed all this lockdown business comes to an end and we can see some family & friends. My wife is back to work in a couple of weeks, but is grateful to be furloughed so we've been together for the last few months. Its only 6 months since shes had a hysterectomy, my god we've defo had our NHS quota this year. 

Im just off to have a bit M&S triffle, got to be done, keping the cals up! : )

Take care

Ray

Hi Ray! Great to hear you are ok. Hope you enjoyed the trifle. 

Hi folks, 

yep , I hope you enjoyed the trifle. He is now back on full monty diet- after about 8 weeks. He's had huge steak, and burgers (: & fair few beers (:

Last chemo on Tuesday- seems a lot better than previous ones , that is probably because he knew there was no more - dare I say for now ..........

JEJ tube now removed!!! By itself, this morning, It just fell out!! , that is probably because all the stitches broke over the last week and he thought not to mention it at the unit!!!!. Ward said not to bother putting it back in now as needs to up the diet without the safety net.

thank god it is the last Dex today!! Omg- that stuff is like ,well, something illegal. Could it be dexamphetamine rather than Dexamethone!!!
 

Hi Ray

My op was a week after yours and I thought my 9 hours was hard going,  although I did become a bit of a legend as it took 3 hours to put the catheter in and was eventually done by a consultant urologist. There was a bit of a panic when they took it out on the Saturday as they had to put the urologist on standby just in case I didn't pee on my own (which I did).

Glad to here you are eating OK - I'm still having to semi force feed myself - I've been given some aymes shakes to try, which are a lot better than the premade drinks. I'm fine on sweet stuff, trifle, yogurts - it's the protein side of things I struggle with.

Looking forward to steaks and burgers and real beer!

Cheers

Bfg

Hi BFG, 

spotted you. Glad you came over (:. Just need to fish out Daisy 71 & Doug.

Not much to report from our side. All quiet. 
14 weeks (there about) post op. 
so look to the near future chaps and look what awaits you . Mmmmmmm
He /we all had Domino's on Saturday, He managed a large pizza in 2 sittings!!! & a cobra- pint that is...
Yesterday - large beef joint roast

this morning- fry up with the 'iron rich' black pudding.

We even booked another holiday- took a risk and went for Portugal in August.

we really are in a 'f ' it ' mood . (: (:

Hi all,

I have been following cancer chat since the end of October when my husband was diagnosed with Oesophageal cancer after being referred from the Doctors for an endoscopy. It was a total shock as the classic symptom of food feeling stuck was recent and 'not that bad'. He choked  on a piece of apple which prompted the phone appointment. 

I replied to Hilts and she mentioned this link as having lots of information. We have had quite a long journey already from diagnosis after endoscopy, all the tests resulting in a laparoscopy on 16th December and then a proposed treatment plan going forward on 30th December. FLOT, surgery then FLOT. However surgery wasn't confirmed until yesterday and I felt like I couldn't join in the chat until I knew surgery was being offered (like tempting fate I guess) sounds silly saying that but that's how I felt.

The treatment started at the end of January (delay due to compulsory DPD test for FLOT (this was a new requirement). My husband has coped well and managed the side effects. Not easy but he completed four cycles without any major events/problems. Now for the biggeee - the op. He has adenocarcinomas of the oesophagus junction known as GEJ and is T3 N1 MO with a query as to whether the lymph nodes are affected or just enlarged.
We will know more when he has ghe appointment with the surgeon. Not sure if he will be shot like you husband Hilts or be attacked by a shark RayB. Reading the threads and your experiences gives us hope so a huge thank you for being brave and sharing your hopes and fears. It is a journey no one wants to be on not even in a First class compartment! I hear the drinks are a bit iffy! 

As you will all appreciate it's been a long 5 months particularly during lockdown. However I must say once treatment started it's been easier in some ways as you have a goal and something to focus on. My husband was 62 at diagnosis (now 63) and was fit and active. He is working hard to get fit and gain weight before the op. Any tips welcome and if you are happy to share if anyone else was juntional cancer too?

kindest regards,

Milly58

Hi Milly

I had the op back on 2nd March about a week after Ray and have been home 3 weeks tomorrow. 

My understanding is that cancers are either in the upper part of the oesophagus (and tend to be smoking related) or at the lower part near the GEJ (cause still being worked on). I believe most of 'us' have had part oesophagus and part stomach removed.

I think it's true to say that each journey is unique, but it's fantastic to hear what is the art of the possible - Hilts husband is proving an inspiration on the food front, though I have a few more weeks recovery before steaks and pizza are in the menu. 

Definitely keep up the fitness and weight pre-op - there is huge weight loss post op, especially after discharge.

I was also a T3 N1 M0, and am currently being geared up for the 2nd round of 4xFLOT.

Like you,  I didn't post until I knew I was in the curative path.  :-)

Cheers

Bfg

Hi Milly. My husband has oesophageal cancer T3/4, N1, M1 (lung) no operation planned. He is on round five of eight EOX chemotherapy and is doing amazingly, he can now swallow nearly normally, has gained back a stone of two lost, and you would not know he is poorly to look at him at all. 
As for what may be ahead, I honestly don't know, he was deemed 'palliative' only, does this change if things improve or not? Anyone? 
He is 63, no prior issues other than indigestion hiatus hernia stuff. Diagnosed November, after difficulties swallowing, and hiccups when eating. Our boys are 22 and 17. 
 

Am wishing you and your husband the very best of luck for his treatment.

Hi Milly. My husband has oesophageal cancer T3/4, N1, M1 (lung) no operation planned. He is on round five of eight EOX chemotherapy and is doing amazingly, he can now swallow nearly normally, has gained back a stone of two lost, and you would not know he is poorly to look at him at all. 
As for what may be ahead, I honestly don't know, he was deemed 'palliative' only, does this change if things improve or not? Anyone? 
He is 63, no prior issues other than indigestion hiatus hernia stuff. Diagnosed November, after difficulties swallowing, and hiccups when eating. Our boys are 22 and 17. 
 

Am wishing you and your husband the very best of luck for his treatment.

Hi Daisy,

Thanks for your reply. I am pleased that your husband is responding well to the treatment and has gained weight. It is difficult to comprehend when the diagnosis is given and even weeks/months after it still feels unbelievable. My husband also looks well which we can only take as a positive. I think Hilts response to your question re palliative care is very helpful. I have a friend who has bowel cancer and was given 'months' but five years later is continuing to receive chemo. She has also agreed to clinical trials. She looks/feels well and before COVID enjoyed trips away and going about daily life.

I hope your husband continues to do well and my best wishes to you both.

Kindest regards,

Milly

Thanks, that's really good to know! 

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 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