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 y'all, 

Millie- of course I don't mind you using 'keeping the faith'. I probably nicked off someone else anyway LOl- just seems to 'fit' with what we are all going through x As for your guy. I think it would be fair to say most of the 'victims' on here have had some complications, there are a few bends/ dips in the road, but the care is sooooo good, that whatever crops up they are on it. So 'keep the faith' LOL, he'll be home before you know it x Enjoy your curry. It has been lashing with gales all day here too.  

Thinking of curry- my guy is now 5 months post op and about 9 weeks post last chemo- he is eating quite literally anything he fancies. So even in your pukiest moments, know that it DOES get better with time.

BFG- husband has now gone down pub on this 'glorious' spring evening. He is also a 'real ale'kinda bloke, loves 'experimenting' with different 'specials'. You are right with the sugar and carbs in Beer thing, but ever the scientist he supposed one of those 'glucose' tabs (diabetics use) would counteract any dumping from beer- funny worked a treat. So he now thinks he is laughing all the way to the bar.......

Redski- the getting fit stuff. It made SUCH a difference to him. He 'invented' this stamina thing  rather than fitness perse thing. Walking up and down the stairs, not at speed, just as you would normally. It is a killer, I managed 1 minuet LOL he worked up to 10 mins blimey! They give you this lung expander thingy- fear not , not one of those 1970's spring thingies and you gradually build up your lung capacity over a few weeks. Can't tell you exactly how it helped as we don't know what he would have been like if he hadn't done it, but he was up and out of bed in ICU within 24 hrs and walking around the ward by 48 hrs. Thingy seems to be the word of the day....

I am afraid though I have to 'disagree' with the 'healthy diet' stuff. My view that he used to eat a reasonably health diet before and still got OC !!!. Most of you will know that I am a great believer in the 'Keith Richards health promotion plan' - I mean how on earth is that man still here- love the guy !. I think what the OC business has brought home to us it that we are all only here once and  it sharpens the mind into enjoying it !The objective before surgery is to put on as much weight as possible! I am not talking sumo wrestling size, but you will lose it over the course of treatment. Enjoy it. High protein and high fat, we didn't bother too much about fruit n veg, as nice as it is, we went for your Rhoda's cream, jersey milk ( normal for us anyway), suet puddings, belly pork, etc etc. When he was having trouble swallowing, everything was swimming in olive oil, and cheese melted in everything. Ice cream every day mmmmm

Lee- whatever you Dad wants to eat, love it any enjoy it. Salad is probably quite tricky to get down, so if he has got that down with no probs, then obviously chemo is shrinking the beast.

As ever I can blather on for hours. But I genuinely like 'chatting ' on here and he is down the pub, kids are probably fighting upstairs!

Y'all keep the faith

HILTS X

Hi Hilts,

Great to hear about your husband! Yes I agree definitely eat what you enjoy/fancy. My husband had Birds cream cakes/sausage rolls/full fat milk as well as all the protein etc. He managed to gain weight.
 

Just spoke with hospital and he is OK. It's so hard not seeing him. He was doing so well after first op and was up walking etc. Such a shock when he suddenly became critically ill. It's been a tough day again as he became unwell again. Procedure was going to be done yesterday but wasn't (maybe emergency cases). 
 

Re IMT training we asked about it but he wasn't given it. He does have a device which he was using after the op and was hitting the top. Surgeon said he was way above the expectations in every way.  Anyway just got to keep going - he certainly is doing. 

Keeping the faith

Milly
 

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...my Dad has his picc line 1-2 weeks before the chemotherapy started. Just a bit of info for everyone- my Dad has had his first round of chemotherapy starting Oct 2020 and it lasted for 6 sessions and consisted of 5 days with a slow release bottle (1 day in hospital and the other 4 days at home/walking about). My Dad has just started his second round of chemotherapy together with antiangiogenic (not sure if spelt correct) and this will consist of going to hospital one day per week for 4 hrs and this will last for 2 months. I am just writing this down as we are going through the Spanish health service and it maybe slightly different to the NHS. 

Keeping a diary is a very good idea - my Dad has been doing this and now he is referring back to the first sessions to get memories of what to expect. From the first session to the present day, my Dad has more or less constantly felt sick, he has had diferent spells where he has felt weak but also had plenty of times where he has felt good and strong...as you've previously mentioned, the journy has definetely been like a rollercoaster! 

Lee.

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 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 

Hi Daisy

Sorry to hear about the diagnosis,  and just to back up what Hilts says - it's rare for barratts to lead to cancer,  and is carefully monitored and managed with omeprazole.  Brother in law has had it for years,  and certainly hasn't stopped the caffeine,  alcohol or chocolate. 

Hi Daisy

Sorry to hear of your diagnoses, as previously mentioned you will be monitored and be put on omeprazole and keep enjoying the chocolate, alcohol and caffeine.

Hi Everyone

On my diagnosis last year the oncology team told me to put on weight 5ft 11 and 15 ½ stone , I didn't have a problem with that lol, eat as much as you want and drink carte Blanche, I wasn't advised to get fit or any mention of fitness, unfortunately my surgeon had a different mindset totally when I first met him I was advised to loose weight for the operation(2 Stone if possible), get as fit as possible for recovery purposes from the operation, I had a turbo trainer in the house and used it every day peddling along to you tube videos trying to keep up lol and walking the dogs legs off.

Just when I thought I was coming out of the low point of the first round of CHEMO Friday gone the bloody white blood cell injections show there lovely face and I am in agony, I did have an episode pre op to the injections but managed the pain with ibuprofen, this time Ibuprofen and Oramorph not touching the pain, wife rang hospital and advised to dial 999, Ambulance came administered a lot more Oramorph and I was put on gas and air ! ,let out of hospital 530 in the morning.

I`m keeping the faith on this roller coaster ride, Bumping along whooooo.

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