Thank you for all the really helpful info and tips, I really appreciate it and will get exercising ahead of chemo and surgery.

How long did people have to wait between getting their Picc Line fitted and then starting FLOT ?

+ Great update on your other half Milly, thank you for sharing and he sounds like he's motoring out the other side now !

Hi Redski

Same day service on both occasions.

You turn up on you first FLOT day, PICC goes in,followed by the juice,

BW 

Hilts

Thank you Hilts !

Hi Redski,

Everyone is an individual but I do think general tips are helpful. Like anything you can choose what advice suits your situation. Just knowing others are either on this journey whether at the start, in the middle or after all the treatment has certainly helped me and also helped me to give suggestions to my husband. The advice of keeping or preferably gaining weight was so right but this isn't possible for everyone. Again getting as fit as possible was such great advice. 

Re picc line it must vary as my husband had his a couple of days before he was due to start FLOT. However due to the dpd delay he had it in for over two weeks. Again it may vary but the district nurse team came in to look after it and also do bloods. The hospital that you are under will give you all the information and we were allowed a visit to where chemo takes place so I went the first time he received FLOT and this helped me enormously to know what happens. 

The obvious one is writing questions that you want to ask and my husband keep a small note of side effects and solutions in prep for hopefully the next round. As I'm writing this I'm having a bit of a wobble as he is still in Step down and it's not easy. However the surgeon and his team are excellent so ....

Keeping the faith

Milly

ps I've realised I may have confused everyone reading my previous post. After his first op he was exceeding expectations but unfortunately after having to go back to theatre and be operated on again he has had to start again. Fortunately the actual original surgery is good, histology results are the best we could hope for but the internal bleeding on his lung has caused some complications which is why he has spent nearly 3 weeks in hospital mostly in ICU. So many doctors come to see him and everyone says the same 'you are so unfortunate that this happened'. The team and Kev are doing everything they can to get him better. 
 

Hi Lee,

Chemo definitely varies and seems to be more personalised than I realised before all this began.

Presumably he has tried changing the anti sickness meds. My husband had an additional one beginning with O sorry I can't remember what it was called. I'll try and find out. Also I bought ginger biscuits, ginger ale and chewy ginger which my husband ate. It did help but the meds are obviously the best solution. 

As you say make the most of the better days. 
 

Keeping the faith

Milly

Writing all these tips down, thank you ! Exercise, balanced diet + some fattening up indulgence, diary to track days / side effects - all really useful and appreciated.

Hi Hilts and everyone, just a little update here. My husband is just finishing his 8th EOX round, and is doing really well, eating well, lots of energy etc. The oncologist wants to order another PET scan and if the mets are not worse, to try some radiotherapy. He will also continue on the trastuzumab, every three weeks. The bad news, I was diagnosed with Barrett's syndrome, after having an endoscopy for reflux (stuck burp sensation) I was horrified, it was the same doctor who diagnosed my husband. He said we need to enjoy what time we have together and finished by saying I should avoid alcohol chocolate and caffeine! I have been in shock ever since to be honest. 
 

It is so good to hear your husband is doing so well post op, and others here too. Sending best wishes to you all x

Hi Daisy,  sorry to hear your news, it isn't fair to have bad news twice like you have.  I guess one positive (if possible) is that you already have experience with your husband. A lesson for us all in this ongoing nightmare, is to enjoy every day as much as possible. Has the oncologist given you a plan of action for your barrett's syndrome?

Lee

Yyyaaayyy, Daisy 71 xx

You're back x. I spotted you on another thread where you mentioned your Barrett's. I swear I am NOT a pervo/ stalker.......I truly was wondering where you were. Funny, none of us have ever met, but miss people when they are quiet. I suppose that is because we are all finding each other 'useful'.

Sooo glad to hear your man's is 'under control'. There in lies the point I guess, is to continue to control symptoms when they play up. Anyway, he's got too many fences to paint & sort out to be ill (:

Barrett's- is an interesting one. Only 5% ever go anywhere with it ,that means 95% DONT, and if anything does start to look off - bang- and the cells are gone. They scope you a lot and keep you on the omeprazole. So in a way it's good that it has been found, if that makes sense. Of course you'd rather NOT have it, but you have been 'caught'. I bet you were utterly speechless about the whole thing, both of you with misbehaving oesohaguses. Stats etc are all well n good, but when lightning does strike x2 , pretty surreal set of affairs.......... I bet the emotional stuff is pretty bad right now, and for what it's worth I think I would be exactly the same with 'deep and meaningful' words like WTF & HTF ( what & how) (:

My mate at work has had Barrett's for over 10 yrs and it is behaving itself- that's the thing though, she is monitored ever year and on ppi's. 
I do genuinely wonder WTF is going on out there- as, as you can see this board is expanding by the day!

As for the chocolate & caffeine, well that will always be a personal call, but I would have to ask, genuinely "if nobody knows what causes oesophagus rot, then how can he say that stopping caffeine and alcohol will help ??" Of course we know acid is a major cause, but why do some progress and others don't etc etc. They have been telling people for years to stop smoking, yet cancer is on the increase- even I can't'go figure' (:

You know how 'inspired' I am by the " Keith Richards Health Promotion plan"
 

Anyhows of out the garden to top up the tan on this glorious summer evening..........in my dreams (:

take care

Hilts