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

Oh Milly - what a horrendous time you've had. Well done on getting in to see him though, our hospital was like Fort Knox and the ward I was on was on an even higher level of covid protection than the rest of the hospital.  Looks like he is well on the mend and should be out of ICU soon. 

Ray - good luck with the brick wall :-).  I've got my 2nd cycle of the final four this Thursday.  I take psyillium husk as added fibre in my diet - I find taking in high calory food in small amounts means my fibre intake isn't what it should be.  The anti-nausea medication also causes constipation and the nurses usually give out senna or something else to help things move along which I took only when taking the anti-nausea tablets.

Lee - those daily injections are a pain - I had to take them when my first PICC line generated a DVT after a week.  Hope your dad is ok on the FLOT - it affects different people in so many different ways.

Hilts - your hubby is still my inspiration, and having 4 pints of beer is certainly a challange I am aspiring to once this FLOT is out the way and things have settled down.  

Oh Blimey Millie!
what a nightmare, what can I say!
BUT- they have fixed it. I wonder if these sort of events are not more common that we realise. When you consider the MASSIVNESS(queens English ?) of the surgery and the billions of tiny capillaries, veins, bits and pieces in there - I suspect they are far more common. Just to cheer everybody up Oesophagectomy has a 5% mortality rate even before they operate, that is how major it is. Surgeon told us that- something we really 'needed to know'

They guy opposite my husband when he was in ,went down like a sack of spuds one morning. Some bleed, but like your guy- all sorted.

Please don't EVER refrain from posting if you need to, that is the whole point of our club, in it for the good and the bad.

SO Millie, they sorted it. If he is out in the chair, even more brill, brill. Trust me , if he was looking at all 'dodgy' he would be nowhere near it !
He is probably being seen by the whole hospital staff- he is probably famous (:

That 'phone call' sounds horrendous you must have a SERIOUS wobble- which I think , given the circumstances was compulsory!
Now that his leaks and lumps  have been sorted, he will be on a very quick discharge programme I would imagine.

Many on here have had stumbling blocks on the way, which is no surprise given the extent of the surgery.

Do remember that he is now 3/4 of the way done 'just' recovery from op,the final FLOT and job done?
Husband is 5 months post op and 9 weeks post his last chemo and last week I think I would say 'normal' (ish). You'll get there.

take care and keep the faith (:

Hilts

Hi all,

Thanks for your understanding and support. Yes maybe it has happened somewhere before. By all accounts not where he is, everyone says the same. One nurse with 20 years experience said he'd seen lots of different things but never known anyone have to go through the op again, although as I said the actual surgery was good. But obviously he's had all the drains, monitors and general parafinalia again! He has had his first cuppa today! Surgeon is going to remove the final drain tomorrow morning.
 

He had so much fluid on him because they didn't know what was wrong so they pumped him with everything just to keep him alive before surgery. Over 5 litres have been got off using Frusemide which has helped him to clear his lungs. Still not lost his sense of humour. When I asked what his pain level was he replied "4 and 3 of that is my bum!" Flat bum from sitting. Good job he got fit beforehand. Just got to hope all keeps going well and he can continue to move forwards.

It was horrendous being at home phone call 9.00 am another at 11 am and then at 1.30 pm to say he'd gone to theatre. Fortunately our two sons work fairly locally so they came home. Anyway as you say they sorted him. Just hope all goes well tomorrow and from then onwards. 
 

Bfg hope FLOT continues to go as well as it can do.

Yes keeping the faith Hilts!

Milly
 

Hi all,

Some good news! Yesterday the last chest drain was removed and so far, so good. Kev is still in ICU but had his first food yesterday (had soup and ice cream before before all the drama!). Puréed sausage, mash and peas. The best news possible is that all of the tumour has been removed and there are good clear margins. Also 37 lymph nodes removed and all are clear! Such a huge relief after the last 6 months never mind the last week! 
 

So onward and upwards albeit at a slower pace. The surgeon has just spoken with me and is very pleased with his progress considering all that has happened. He is moving to 'step down' either today or tomorrow. It has been a real knock back but he is recovering. They are taking it slowly to ensure he is well enough to come home. He also said that prior to what happened he was exceeding all expectations and it was so sad that this complication happened. 

All in all a good day! Much better than last Wednesday. Surgeon said he's not out the woods yet but has done remarkably well.

Lee I hope you've managed to get out and your dad's swallowing should improve with chemo. 
 

Bfg hope your FLOT is manageable.

RayB hope you are continuing to make progress.

Hilts - I think I need to have four pints!

Doug your continued recovery is very encouraging.

Everyone - this is such a hard diagnosis and having people who understand is truly helpful.

Keeping the faith

Milly

Very good news Milly...nice and steady,  one step at a time. 

My Dad has just had his first session of his second round of chemotherapy.  The oncologist has said he will have 4 hrs every week for 2 months- standard chemotherapy and antiangiogenic (if I've spelt that correct!).

It's my birthday today so we have all been to the beach for a nice day. 

Good luck with your husband's recovery. 

Lee

Hi Lee,

Pleased you have a plan. My husband had those injections for 7 days. They can cause muscle cramps/back ache so just speak to the cancer team if they do. He had warm baths and used Aveeno and I massaged his legs for him. I'm sure your dad will know to try and drink lots of water. Also my husband found ginger biscuits helped and lemon and ginger tea. 

Happy birthday. So nice that you've been to the beach. As you say one step at a time.

keeping the faith

Milly

Hi Milly

Delighted to hear about progress and the fact that he is now on "minced and moist".  From the original OP side of things, that's usually the pre-cursor to getting out of there and going home - so hopefully not long!

Happy Birthday Lee! Hope your Dad is doing well as can be on the chemo.

bfg

Hi y'all.

Happy Birthday Lee 21?
 

Millie- that is really GOOD news, they will chuck him out in the next couple of days. Not sure about anyone else, but my husband chest drain was the last thing to come out, and now your guy is also having a la carte hospital food- his 'eviction' looks imminent (:

Bad day for me today, sense of humour left me and a total meltdown arrived. Other people as usual and managers at work grrrrrrrr , emotional intelligence of a camp guard !

Better a bit, and now husband has put 'Gordon Ramsey- Headteacher' on you tube. I'm not sure who is enjoying it more him or the kids!!!! Making me laugh too.

For some weird reason , when I logged on here it took me to a page ' Agnes left ***' god that made me laugh, I posted to her . Maybe karma, but I am now smiling at the thought of my bosses being a pair of t**its (((: ( triple smile = laughing +++ emoji, but this board doesn't like emojis)

I sometimes think meltdowns are good for the soul, clears junk from the ' spin cycle' brain

Anyhows

Laters, fellow travellers & keep the faith

Hilts

Hi Hllts and everyone,

You have made me laugh too! The surgeon has said he will be in a while longer, looking at next week. To be honest he needs to get back where he was before it all kicked off! Surgeon said was such a shame as he was exceeding all expectations by a long way. However he has made good progress for saying he's had two major ops in a week! Fluid coming off him and bits and pieces being removed. He has been in ICU for 2 weeks apart from 1 day in step down. 

One day at a time but such good news and he is determined!

Work will always be there and events like this certainly put everything in perspective. As you say sometimes we need a 'meltdown' to enable us to move forward again. Life eh? You sound like you have a great family unit with all it's day to day normal ups and downs and having a sense of humour is essential! 

Keeping the faith (not the TV programme!)

Milly

Hi, hope you're all well.

This is a helpful, encouraging and positive thread - so know that you're helping many, even if they aren't posting, they're likely reading  ; and they're going through this journey too, and following your updates is really uplifting.

Just a quick question, have the option of a Port or Picc line starting FLOT pre surgery and been recommended the port - and wondered what you guys had ... 

Thanks for the help.

Hi, hope you're all well.

This is a helpful, encouraging and positive thread - so know that you're helping many, even if they aren't posting, they're likely reading  ; and they're going through this journey too, and following your updates is really uplifting.

Just a quick question, have the option of a Port or Picc line starting FLOT pre surgery and been recommended the port - and wondered what you guys had ... 

Thanks for the help.

Hi redski... unfortunately my Dad has been diagnosed with stage 4 and inoperable...so surgery hasn't been an option for us.

Lee

Thanks for the reply Lee and it sounds like you and your family are giving your Dad so much love and attention through his journey, it's really lovely to read !

I meant for my chemo, I'm not sure whether to have the port fitted or a picc line. Do you know which fitting your Dad used for his chemo and whether it was easy / hassle free / no infections / blockages etc - I was asked which I wanted and I have no idea !

Thanks for your help 

Hi Redski,

My husband had a picc like. I know a friend who has a port but don't really know the difference? I do know that the picc line goes to a central vein. Hilts  may help being an ex nurse and all that! 

Re FLOT ask away, I am a concerned onlooker. My husband coped pretty well. Yes there were side effects but he managed them. He had a heat pad for his throat as he had a slight reaction to the Oxaliplatin. At least it's warmer - winter when he had his FLOT and during lockdown! He drank lots of water and took warm boiled water in flasks and a cup for when he woke up at night. Seemed to help him. Hope all goes well. Cancer nurse should be able to explain pros and cons of port or Macmillan nurse. I used their help line. I found nurses good, emotional support not as good. Although sharing your feelings/fears with a stranger can help.

Keep the faith #Hilts

Milly

Hi redski,  my Dad has a cafeter fitted just below his left shoulder- everything goes through there eg. Weekly blood tests,  chemotherapy,  pre scan drugs ect

My Dad has not had any issues with this and easy quite easy and straightforward 

Hi

Milly glad to hear your husband is on the mend. Its a long slow road we are on.

Hilts glad to here the husband has returned back to work a bit of normality for yourself whatever that means in this mad world

BFG good luck with the final 4 this Thursday it will all seem a distant memory very soon.

Leechap definitely not the nicest thing this chemo but for a bit of constipation or even tingling the benefits outweigh anything else we just have to grin and bear it and be glad we have strong family's supporting us.

Redski

I have had a Hickman line (central line) and also a PICC line (on my second PICC line now), I believe the port version is the Hickman version, my understanding is some staff  prefer this version due to it not blocking as easy for administering drugs and taking bloods, In my experience the PICC line is a lot easier to install and remove, my personnel issue with these lines is my body tends to rejects them and gets infected and i end up on antibiotics.

Hi Redski

I didn't get a choice and had a Picc line.  I had a dvt with my first one last December on my first flot round,  which resulted in blood thinners for a few months, but they moved it to my other arm (radiologist was impressed,  saying it was the longest ever picc line for him). So I'm currently on my 3rd picc for my 2nd round of flot.

Other than the dvt which is not uncommon, I've not had any infections - but there are others in this chat who have.

Picc is relatively hassle free,  just need to ensure the end is covered and strapped back onto the arm to stop it irritating in between cycles.  They gave me an elasticated cover - nothing fancy - to protect it in the shower.  Nurses paid a visit day after chemo to remove the pump,  then a week later to flush, and then to take bloods before the next cycle. 

As others have said,  ask away - we don't really shy from providing our experiences, side effects and occasional gory details. 

Lee, Milly, Ray and BFG ... that's really helpful, appreciate you sharing - makes sense and is exactly the sort of intel I needed - thank you.

Also, sharing your experiences has really helped knowing what's ahead, including all the bumps in the road - but that there is a pathway through it all, thanks.

Hi y'all

Welcome to the club Redski- as you can see we are increasing by the day/ week. Full details please  for nosey Parker (me). Or can I take a wild guess bloke, 50-60, trundling along, then bingo, bit 'trouble swallowing- endoscopy, expecting maybe ulcer or 2- then a ticket for the 'biggest' rollercoaster in town!

yep, this board has kept me going through all the 'rollercoaster'. I know this sounds weird, but it really help knowing that you/ us are not alone, for better & worse.

I'm am not sure if OC is actually on the increase, or its that we can find each other these days on places like here.

Millie- Didn't know there was a programme 'keeping the faith' mine is not a religious thing,, but a saying from my 'dissafected' long past youth.... scooters, bank holiday runs, northern soul, ska, and the one and only Stranglers x. It was a bit of a 'scene' saying. Always together type of stuff. No matter what -type of saying.

Redski- I digress ( a lot). Don't think my husband was given a choice. He had a PICC line x2 behaved itself until the 7th cycle, but managed to keep going to the 8th. I used to be a nurse, yes, but that was in the 80's. I'm not sure any of these longer term lines were even invented! So everything I know has been from the 'lived experience' All the chemo and especially the surgery is/was nothing like I remember it or imagined it to be. It is incredible how super slick the whole thing is.

A sense of humour is something to really hold on to. If you can't laugh what can you do! Even during the 'yuk' times, we had such a laugh watching really un PC stuff on you tube etc. 
 

what can I say all - current meltdown over, feeling more chilled and as ever 'keeping the faith'

Hilts

Thank you. Yes, this board / post is excellent to keep it positive and follow others journeys through it just as I landed into it.

I'm 43, been through staging and am T3 N0 M0 so starting FLOT then surgery and FLOT again. Not sure how I'll cope with FLOT, been trying to keep working from home through it all so far to keep busy and mind on other things. Like most have said here, the staging / waiting for results / uncertainty etc. was really tough and it's perhaps a bit easier now just knowing there's a plan and to get my head down and focus on cracking through it.

I didn't have the trouble swallowing bit, as I've found out I don't have a lump tumour but more subtle spread around the stomach and oesophagus junction ... I was more struggling with heartburn, indigestion and not being able to eat as much as I previously could so knew something wasn't quite right. Had a few GP appointments stating IBS. Got a referral to a Gastro and got scoped and then bam, like you said the sledgehammer news comes in !

Ah, bless you Redski- I swear I am not religious (: nothing wrong with it, but really not my thing (:

yep, if you look through my old posts (click on the blue hilts thingy and then go into reposes etc) you can probably tell utter hysteria at first. I'm not sure if everyone would agree , but that initial bit of diagnosis and staging is the absolute worst worst part.

The emotional side of stuff is far far more difficult to deal with and understand than the physical stuff, but I would say that as my husband is the victim, not me. But guess what, no matter what *** this throws at you you WILL get through it, and please share anything that is on your mind.Ask away. We are all but fellow travellers. 
There are a few around on here that are well past post op. Doug drops in occasionally, he is a year post treatment.

Distraction has been my saviour. Keep my mind busy doing something, anything other than thinking and worrying about IT.

My husband was junction as well, we think ! LOL, we/ he didn't really care where it was, just wanting it GONE(:

RayB- yep he went back to work, but 'over did it' not physically, but v v tired, exhausted so he'll go in 1 day for a bit then 2 for a few etc, but he has now crossed that line of knowing that he can go and not everything is about cancer.

To all- he managed 4 pints last Friday and is going to the pub tomorrow to watch the football- I have no doubt whatsoever that he will try his 'experiment' again !
So Redski, and those who are approaching the end- of treatment !!!!! That it does get more back to normal as the weeks go by.

Lee- know too that you and yours are doing a fab job. Yes, of course it is tough, but look at what your ARE achieving. He might be 'inoperable' but there are several around on here who are, but are plodding on. 1 guy I always mention is 'davek' who is 7 years into 'inoperable'. I think symptoms are blasted/nuked when they play up. I was talking to someone, who knew someone (know how it goes) who has 'bone cancer' and been managing the symptoms for 20 yrs!!!!!- so get planning some nice family stuff. As my old Nana used to say (died age 95) " get out there and make memories "

keeping the faith

Hilts