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

Gosh, glad you are ok! Sounds very scary. 
 

thanks to all for kind (and humorous comments) made me smile. I think I will look like Keith Richards soon, with all the stress :laugh: 

Hi Daisy,

it must have been a shock for you. I can't say I know a lot about Barrets but from the comments on here it sounds positive and that you will be monitored.It's so hard especially with your husbands diagnosis. I am pleased to hear his condition is being managed and he's feeling better.  Re Keith Richards - I've been and bought some more anti aging cream lol.

Ray B so sorry to hear of your recent trip to hospital- sounds very painful. It sure is a roller coaster. Take heart that you'll get there. As Hilts said many of the 'victims' have set backs along the way. Not what you want physically or mentally! I've been back in 'brain whirring' mode. 
 

Your experience re pre op does show how advice can be conflicting. It was a friend of a friend who has had op that advised weight gain and getting fit. Also this site was very useful when I was just reading the posts from you guys. 

My guy is still in Step down. 

Keeping the faith

Milly

Ray,

This isn't so much a roller coaster - this is being on a twister, on a roller coaster, with dodgems being thrown at you from all sides!

I always read the side-efffects of the stuff we're taking just to make sure I know what may be heading our way, and - touch wood - apart from a couple of aching bones on my first one during the first cycle, I've been ok.  But having gone through the infected feeding tube scenario after the op where the pain was horendous - I feel for you.

Glad to hear you are back home though - that always helps.

bfg

This describes it perfectly lol

https://youtu.be/lLMudSNOCRg

Hospitals are great places, when you need them but so glad to be back home.

HI Rayb

You are having a bit of a time off it pal , hang in there , if an old turkey like me can get through this anyone can , the same goes to anyone reading this thread  , maybe i was just lucky to have a top flight team looking after me  coupled with my laid back attitude to the whole journey , this is not a sprint race more of a marathon , even now i think it will take me another year to fully recover even though i have started work 6 hours three days a week i still need plenty rest and down time , so my message to you Ray and everyone reading is be patient , relax , rest and take it easy , your body will let you know when it's ready to move ahead , impatience only leads to setbacks , in the meantime i as always am available to offer non clinical support to everyone , as always take it easy !

Regards

Douglas 

Thanks dooggreg, nice message. 

Lee

Hi Lee

Thanks for that , and you take care of yourself 

regards

Douglas

Who can help me come up with a word to describe the constant checking of a forum to see if anyone has posted an update?

It's always a challenge  - I don't like to ask how things are, as it seems intrusive - and like others, I don't tend to post negative stuff unless I can make it funny.  

But anyway - enough rambling.

I'm now 1 week post 2nd cycle of round 2 of FLOT - counting down the days (22 or 3 weeks tomorrow) when my final pump can be disconnected and the picc line removed - and as my surgeon said, let the recovery commence (I'm still aiming for the 4 pints as my 1st tick-box hilts!)

FLOT 2nd time around is slightly harder than 1st time, but still manageable - and again I would advise to share with your respective teams anything that's different, or unusual - there are a panacea of drugs out there that can help.

But enough of the bfg - just to let others know that I'm thinking of you all too!

Thanks for the update BFG - good to hear you're making progress. My Dad is on the second week of the second round also - he has already noticed an improvement in his swallowing and yesterday managed to eat some chicken on bbq! Our situation is different from yours as my Dad was told surgery isn't an option as its stage 4 and had spread to the lymph nodes on diagnosis. My Dad is doing really well and is still feeling strong under the circumstances. We are feeling that why the chemotherapy is obviously working with regards to swallowing (as it did on the first round), you feel that poisoning your body isn't as 'good' as you first think when swallowing improves - i guess it's a double edge sword!  

Hi,

Douglas I'm usually a very laid back person myself but for some strange reason, mind mindset isn't InTouch with reality, I haven't just been in for a nip and tuck lol definitely a marathon thanks for the words

BFG I'm chasing you lol, I have my second round of FLOT post op tomorrow, my experience of this is round 1 felt a bit more sickly than before never experienced the fingers tingling sensation but my left foot has been tingling for a few days now and I had the documented hospital visit urgh, regarding this thread updating/ refreshing, if you view this on a phone browser just maybe leave a tab open in your browser and hit the refresh or in Windows just leave a tab open and Ctrl + R , this is my way as sometimes I don't get an email advising there has been a new post.

Lee It definitely is a double edged sword and toxic stuff, but if it's improving things hey let's have some more, BBQ chicken very nice

Hope everyone else is bobbing along nicely at the moment.

Ray

Trying to keep it real

Hi,

Douglas I'm usually a very laid back person myself but for some strange reason, mind mindset isn't InTouch with reality, I haven't just been in for a nip and tuck lol definitely a marathon thanks for the words

BFG I'm chasing you lol, I have my second round of FLOT post op tomorrow, my experience of this is round 1 felt a bit more sickly than before never experienced the fingers tingling sensation but my left foot has been tingling for a few days now and I had the documented hospital visit urgh, regarding this thread updating/ refreshing, if you view this on a phone browser just maybe leave a tab open in your browser and hit the refresh or in Windows just leave a tab open and Ctrl + R , this is my way as sometimes I don't get an email advising there has been a new post.

Lee It definitely is a double edged sword and toxic stuff, but if it's improving things hey let's have some more, BBQ chicken very nice

Hope everyone else is bobbing along nicely at the moment.

Ray

Trying to keep it real

Hi all,

RayB I hope things improve and you manage your second course  of FLOT. You have not had  a straightforward journey, although I appreciate it's not a straightforward situation full stop.

Thamks Bfg for thinking of us all, as I do too. Everyone's situation is unique. I've not posted as like you say we tend to like to focus on the positive. My husband is still in step down. He has fluid in his chest cavity a result of trauma due to the bleed on his lung and 2 major ops within a week. The fluid is not draining easily. He has had a small drain which took some off but not enough. Therefore he has had to have a bigger drain put in ..again. This is a real concern to me because of what happened. I've been ringing during the night sometimes and the staff are brilliant. 
 

Lee I'm pleased the chemo is working. Your support will mean so much to your dad. I know how much our two sons have helped us.

Keeping the faith 

Milly

Hi y'all.

Glad to see everyone chugging along.

We are now having a problem...... husband doing so well, I suppose I thought we were done with complications aha- not ):

Although I have to say- not a really bad one as things go.

He is booked for an endoscopy. He's had a dreadful cough - been going on since post op, but they are thinking 'tight ' scar tissue causing reflux, = cough. Treatment pretty straightforward according to them - we know nothing is 'straightforward' in this game (:

If it is found to be tight then they will dilate it with a balloon- quite common apparently. Scar tissue from the join. We are both pretty wobbly. The mere mention of 'endoscopy' fills us with dread after the last time eke!

Surgeons pretty sure nothing dodgy going on, but thought that once before!

so , trying to keep the faith

Hilts

Ps- I follow this thread and get notifications every time there is a post, makes me look like I am on here all the time- just once a day (:

Hi Hilts,

I'm afraid we don't feel like we are chugging along, more up and down but hoping for more up! Over 3 weeks since first op which went so wel ..... 

I think I've read about this procedure somewhere - is it to stretch it?  It's natural to feel concerned. Hopefully it will be sorted quickly and help with the cough. 

Keeping the faith

Milly

Ray,

you are nipping at my heels. I feel more "sickly" too this time around - especially when it came to eating, but that wore off after a week after the cycle- my fingers tingle too, and sometimes my right foot decides to go off somewhere on it's own adventure (at size 14, I'm sure it's out there scaring old ladies).

Milly - they are ultra cautious about the chest draining.  My other half (which is another novel in itself) wouldn't be let out of hospital too, until the drain stopped draining - very frustrating.

Lee - great news about the bbq chicken.  My surgeon is very much of the opinion that improvement in eating can tell you more on how things are working than any scan - it was following my 2nd cycle 1st time around that eating improved.

Hilts - I read about this on another forum.  It's not uncommon and straightforward - but I know what you mean.  The last time we all had an endoscopy, it didn't turn out that well - but better to know and when his cough stops, he can drink more beer!

Keeping the faith, really!

I definitely feel his nerveousness too ! I have an endoscopy @ 1130am this morning (am in the Uber en route now!) ... it's just a box ticking exercise this time of a pre treatment biopsy to be able to join a clinical trial. But, like you and BFG say, the last time I had one - the experience and memories associated weren't great, so a bit nerveous !

Starting my FLOT-A next week, excited to get underway and start nuking it finally (as odd as that probably sounds!).

Thanks all for your great updates too, is super helpful not riding the roller coaster solo !

I'm sure your Husband's procedure will be fine, he sounds like he's doing so well through it, don't worry !

Hi y'all.

That the good thing about being on here. We all 'get it' the ups , downs and everything in between.

i am reassured by the fact that it is not regarded by team as 'urgent'.

I wonder how much of it is 'one experiment too far' LOL. He has been told to eat smaller meals and take it easy, but nah, he eats pretty much like he used to and drink grrrr. But we"'k see.

Surgeons think it is highly unlikely to be anything' dodgy'.

As for the chest drains. I remember them being ULTRA fussy with his. It was the last thing to go. They won't take it out until it is almost draining nothing at all. When you see the size on the bucket, it kinda gives an indication of how much they are expecting!
Off on hols tonight, no packing done....... the sun better shine on the east coast. Apparently, it is 50% drier than the west coast , so fingers x. I think I'll get 'edited' if I say where, but never been to this part of Blighty before so looking forward. At least I am away from work!

take care all,

sort of - keeping the faith

hilts.

Hope you guys have a wonderful holiday !

Hi Hilts 

Have a wonderful holiday and I hope you have fab weather- it's looking good! 

Keeping the faith - even my friend is now using this too!

Milly

Thanx.

Will try. We live probably in the most 'inland'place in England and it is forecasting 23 deg ! East coast 15!

NO RAin in the forecast- or so it appears. I grew up in the 'west of Britain' and rain was mostly guaranteed. Rust rather than tan LOL

Ah yes Keeping the faith- it is VERY nostalgic for me. I think it originated in a 'northern soul' club land- Wigan casino. Have this old pic on the wall, one of those montage-y things. Of us lot circ. 1982 , all on a scooter run to the coast, dressed up to the 9's in full gear. Us girls thinking we were sooooo cool, on the back of these machines that we were way to young to drive !!!!! The Lads in the crew, just about old enough ! Funny I don't remember the rain back then LOL.

As ever 

Keeping the faith

Hilts

I'll probably end up posting while we are away!!!!! I'll miss y'all too much - ahhh

Hi Hilts,

You've made me smile and we also live in the most inland location furthest from the sea!

We used to go to  Sutton on Sea as kids. My dad used to 'pack' the sun in a round tin and take it with us lol.

Have a drink and an ice cream for us!

Keeping the faith (have to do this)

Milly