Hi Rayb

just been through this had FLOT april and may operation in june  its a long journey but stick witk it.

It may all sound a bit frightening at first i would recommend you read up on your treatment the FLOT is bearable and the operation is not really a worry although it is a major operation i will say that at no point in my journey have i really suffered any major pain and i am 90  percent recovered as of today if i can offer you any help or advice please contact me as it is always good to hear from someone who has been through this procedure recently , our NHS will take care of you by far the best care you can get ,trust me.

do you know what a plo is in an operation? 

would be grateful if you have any idea

sorry to hear about your diagnosis x

Just my regular check-in. Thursday was my second chemo session (9 hours... ugh. Thankfully only have to do that every three weeks!) and my daily chemo tablet dose has been doubled as they found nothing odd or worrying in my blood work. 

Got myself a Nutribullet, got prescribed Aymes shakes and I think I'm finally getting into the swing of taking in nutrients despite having zero appetite ("only" lost 6kg in the last 6 weeks which I don't think is too worrying). My oesophagus related symptoms are now the least of my concerns (simply swallowing issues that don't occur as I'm not eating anything too big, dry heaving and mucus build-up). Instead, my more recently discovered bone lesions are starting to flare up more and more and my pain medication is getting a weekly boost up and up (and I'm not complaining ;) ) 

The family seem to be finally accepting my diagnosis (made easier by my declaration of zero visits for my first couple of sessions of chemo) and are now being a little more realistic about future prospects (and aren't trying to make me drink/eat disgusting new age "cures" for which I shall be eternally thankful for). 

Keeping the faith that my CX chemo will at least keep my lesions from growing and maybe even slightly shrink my tumour so I can eat something a little more solid by Christmas. 

Hi Jaeinkent, 

Yes all of what you've said we can relate to...my Dad is going through his second round of chemotherapy and his swallowing has improved but he also is suffering from real loss of appetite.  Nutribullet is a great idea - a real good way of getting nutrients and goodness inside by an 'easier ' form of swallowing. My Dad's last scan had shown a reduction in tumour/lymph nodes,  so hopefully you'll have similar results.

Good luck 

Lee

Hi All,

Jae I hope the chemo helps and good that your family are supporting you in the way you want them to. It is hard being an onlooker and we all want to 'fix' things.

Lee pleased your dad's chemo is having a good effect.

Our news is Kev had his first of the planned 4 cycles of post op FLOT. The District Nurse has removed the bottle this morning. Hoping all goes well. 

Also I managed to break my ankle as we were walking (getting fit lol). Went down a drop in the field and twisted it. As Kev said better me than him so I've taken one for the team! Fortunately it's not a bad break so no op or caste just a big boot for 4 weeks! It's the inconvenience of it! Luckily our lads live nearby so they are helping out but it's all about limiting risks whilst Kev is on chemo. Obviously I can't drive! I've had a bit of a meltdown as I can't help Kev as much as I want to. 

Anyhows just got to get through it - as the saying goes 
'It is what it is'.

Hope everyone else is chugging along and I do think of you all.

Still keeping the faith

Milly

Hi Milly,

oh bad luck with the ankle, so flipping painful and a real inconvenience! I bust mine last March, first bike ride of the year! That ankle still swells now annoyingly. Anyway, perhaps it's time for you to have a bit of tlc, I think you partners are so busy doing such an awesome job looking after us poorly bears that you forget to look after yourselves too, I know my HB does, I keep telling to go and have some 'me time', finally he treats himself to a long cycle ride now and again.

Jae, good stuff that your family are behind you, and yes, I feel your pain, my best mate is a herbal practitioner, you wouldn't believe the gunk I've been made to drink! 
Really good news about your Dad Lee, it's going the right way.

Had my liver ablation ok and then an iron infusion, still waiting for date for THE BIG ONE! Marked another milestone, my son graduated with first class honours last week, so proud of him. Another one next weekend as my daughter and husband celebrate part two of their wedding .

sending healing hugs and keeping the faith

Tabnabs

Hi y'all

Now, I have been 'abroad' for a week, somewhere beginning with AZ out in the middle of the Atlantic ( not sure if I am allowed to name places on this board like the Azores- cheeky). We got home at 6- where have I headed at the first sit down op ?? HERE - to see how all is with all etc.

Millie - WTH!! You poor thing. Now I have some more proof to my theory that exercise is really BAD for your health!!and the Keith Richards plan is the only way. Really glad Kev is on the juice- only 6 WEEKS and he's done. After all the months, that's it finito x

Jae- you are doing well. A lot of your stuff may well be chemo side effects, there is nothing that fails to surprise me with that amazing but foul stuff- bone pain is one of them, because your bone marrow & production is being given a slap. Which is of course is the whole point of the stuff, to stop cell division. Everything hurts on it ,even ,thankfully the cells we don't want. That old saying comes to mind " there are drugs that have side effects and drugs that don't work" chemo certainly does its job. As for family - what can I say, bless em," can't live with 'em, can't live without 'em". I bet you spend half your time worrying about them (:

Tabnabs- Nice one on the son & degree. Probably brought a tear to the eye- for both of you x. As for the big one- after what you have been through, get stuck into the ********. Chopped, gone. We are all 'experts in the lived experience' LOL so ask away and we are with you all the way.

Leechap- good to hear your Dad is getting results. That chemo stuff is seemingly doing the trick for a lot of us. 

Tbh- I did miss  tuning in while away (:Anyway , off to scratch my mozzie bites and cool my ginger tan ,well burns (:

Always keeping the faith

Hilts x
 

Hi Hilts, Tabnabs and everyone,

Thank you for your good wishes. My ankle is less swollen so hoping 4 weeks  in the big boot should do the trick! 

Well hearing about your AZ trip certainly lifted my spirits! So pleased for you all. Tabnabs wonderful news on your sons graduation and your daughters marriage. I hope you soon have a date for your op.

Kev has had a few rough days after his first of the second round of FLOT which started Friday 6th but by yesterday he was feeling a bit more human. He has even managed two short walks yesterday and has been on another this morning. Incredible when I think how at the end of June he was in a wheelchair and had to get his breath to even talk! Without the last emergency op on his lung he wouldn't have got better. His eating (apart from when he felt nauseous) is really amazing. He has eaten lots of different foods. He has had a couple of the 'dumping' episodes but can link it to sugar (too much chocolate!).

I had a bit of a worrying time as I had a suspicious mole (noticed it but dismissed it as we had enough going on!) anyway urgent referral last Thursday  to dermatologist but everything is fine phew!

Just to make you smile it was our 37th wedding anniversary on Wednesday so it was another night in never mind an out out night! So we now have cards for Kev, anniversary cards and cards for me up! The cards for Kev are staying up until hopefully he finishes this next round. 7 more weeks and counting ....

Keeping the faith and sending healing hugs (nice one Tabnabs)

Milly
 

Hi Milly,  good to hear kev is on the mend and your ankle is also. Congratulations on 37 years!

Lee

Cheers Lee,

I hope that your dad is continuing with his treatment which sounds very encouraging.

keeping the faith (for everyone)

Milly

Hi Milly 

not been on here much recently but did notice your comment about the dumping , yes to much sugar is a definite cause as i have learned also , anyway hope you are all getting on with recovery and take care of yourselves

Regards

Douglas

Hi Douglas,

Thanks for that and I wondered how yiu found the complimentary therapy that yiu mentioned in a previous post?

keeping the faith

Milly

Hi Douglas,

Thanks for that and I wondered how yiu found the complimentary therapy that yiu mentioned in a previous post?

keeping the faith

Milly

Hi Milly

I am waiting on a course of reflexology provided via  a local charity and a general fitness course from my local authority , hopefully in the next few weeks and i will let you know the outcomes , take it easy.

Regards 

Douglas

Hi Everyone.

after 1cycle my only real problem is acid reflux between 12 noon and 5pm every day. I think I am doing the right things like eating slowly and softer food for lunch, + fortisip, and I also have the fortisip and Ames savoury soup to add to normal food. As backup I have a prescribed Peptac liquid which is equivalent to Gaviscon and which coats the stomach lining. My main "defence" is Omeprazole from my GP and the dosage is 2 once in the morning.  I am posting this to give my experience of omeprazole together with peptac.
The issue is this. The omeprazole is not sufficient. My GP says don't take 3 per day but use the Peptac instead of a third omeprazole. Peptic instructions say clearly not to take other medication including the anti-emetics within 2 hours of peptac because it inhibits absorption of the other medication. Any schedule changes I make would not quite fit in stop the pm acid reflux. This will be surmountable so any bright ideas ?

walter Mac

Hi Walter-Mc 

Welcome and glad you found us! I'm afraid I don't know what to suggest but others on here may do and if not I would suggest that you speak to your cancer or GI nurse specialist as they are fountains of knowledge!

keeping the faith

Milly

Hi Millie

as always I contacted my upper IG before anyone. Their suggestion was one in an then one in early evening which didn't work, then they were unsure so suggested taking 3 a day. That won't work because the prescription was not from the hospital but came from the GP who said unequivocally don't take three. So that is why today I asked for anyone on the forum. for good ideas. 

keeping the faith, the only way is up !

Hi y'all.

welcome Walter mac. To the oesophageal club. Hope you find it as useful as most of us do

In fact I have just been for a long weekend in the big smoke, and where is the first place I come when back? Here.

We (husband = victim, me = watcher and resident chatterbox) are out the other side - for now, I always say that, feel like I'm 'jinxing ' if I don't. After 9 months of treatment he is (for now) active/ visable disease free. A year ago last week, we got the shock, sudden diagnosis at the age of 56. Started treatment on 5th September finished on 23 rd March. What a 'spectacular' year it has been. We still look at each other and think what the heck just happened.

Most on here are pretty fit people, the diagnosis coming completely out of the blue, bit of sudden food clogging and bob's yr uncle adeno.

I can probably come in on your 'omeprazole' issues. We are generally NOT a good example to follow, as we do 'tinker', but given the diagnosis, we thought 'well, the worst is happening, so let's just try things.

Husband started before diagnosis on 20mgs, of course it did nothing, it was only once the 2 nd chemo was given did his food clogging improve, but of course with the blockage in decline, the GERD increased. He would take his omeprazole in the morning and quaff a load of graviton of an evening. Since surgery and post op chemo, he still has the reflux, but he now takes 80mgs of omeprazole, 40 in the morning and 40 in the evening. Recently, he has not needed the gaviscon. Also what does sometimes 'escape' is not acidic. So doing it job. Omeprazole does take time to work, about 3 weeks I would say.
Millie- yep the 2nd round/ post op chemo is pretty grim, but of course it will be doing its job. So now 'only' 2 more to go FOUR WEEKS. Then the recovery , both physically and more difficult emotionally,really begins.

One thing for us- anyone have info tips?
Husband eats pretty well, BUT, he can't seem to hold on to much weight. His big losses came during the post op chemo. He muscle loss is quite noticeable, his butt has vanished , legs like sticks, he didn't have much to play with before!. Eats loads of protein, fat etc, but nah, still skinny.

Any tips?
Anyhows laters folks

and keep keeping the faith

Hilts x

Gosh - I posted the following in the wrong chat:

Hello to fellow rollercoaster riders,

I’m still chugging along – but more of me later!

JaeInKent – hope you are coming out of the feeling like youknowwhat for the first week after chemo.  Glad that you are not on the new-age food anymore – it feels like a bit of a free pass for me at the moment, eating what I want, and the missus keeps threatening to remove it and get me eating “sensibly” again as my weight is relatively stable.

leechap – great news on the shrinkage.  Loss of appetite is a big problem – certainly in the months post op it almost seemed to be the teams biggest concern that I didn’t lose too much weight as it leads to other problems on vitamin and mineral deficiencies. Even now, I enjoy eating mostly and have gotten into a routine for eating – but if I don’t eat, I don’t miss it (I don’t get the rampaging hunger that I used to get). I too was given a sample pack of the Aymes – with a view to getting them on prescription.  A couple of them were palatable for me (vanilla being 1 and chocolate being the other), but the rest……..  Fortunately, I ate food so didn’t need them.

Milly – what are you trying to do to us?  Hope your ankle is improving!  I bet that big boot is fun – gosh, I wonder if they do a boot for me if anything happened to my ankle – best not find out. Delighted to hear about hubby too – I was the same on the 2nd round of chemo, right of food for a few days and then picked up afterwards ready for the next bout.  The dumping syndrome is odd – I found when I understood the dynamics of why it happens quite interesting

“Early dumping syndrome can occur because of the dense mass of food that gets dumped into your small intestine at an earlier stage of digestion. The intestines sense that this food mass is too concentrated and release gut hormones. Your body reacts by shifting fluid circulating in your bloodstream to the inside of your intestine. As a result, your intestines become fuller and bloated. Diarrhoea often occurs 30 to 60 minutes later. In addition, certain substances are released by your intestine that affect heart rate and often blood pressure, causing many of the symptoms of early dumping. This can lead to lightheadedness or even fainting.

Symptoms of late dumping happen because of a decrease in blood sugar level (reactive hypoglycemia). Reactive hypoglycemia is low blood sugar caused 1 to 3 hours after a large surge of insulin. You are more likely to have dumping syndrome if you eat a meal heavy in starches or sugars. The sugars can be either fructose or table sugar (sucrose). Insulin levels can increase to high levels, and then lower your blood sugar too much.”

I tend to get “late” syndrome, but not all the time.  I had chocolate cake (that was almost pure chocolate) at a restaurant on Saturday without any problems and again for 11’s this morning.  Last weekend I had a problem after a beer and a few crisps, so go figure.  It has certainly eased off since the early days post-op.  I have mixed fruit muesli for breakfast every day – and have yet to have a problem post that.  If I get it, it’s usually either mid-afternoon or late evening.  And sometimes, I can just rest when I get the palpitations and sweats, and it just eases off.

And congrats on the anniversary! 

My news is that my partner and I got hitched last October after 33 ½ years together and have only just told our friends (hence a party on Saturday).

Tabnabs – great news on the progress and congrats to your son – 1st class! 

Hilts – holidays in the Sun, weekend in the big smoke!  What’s it like? I don't know what to suggest for your hubby.  I've settled around 118kg, and have also lost a lot of muscle definition - certainly the legs are skiinnier (born out by the skinny fit jeans I've just bought).  I've started working out again, but its slow progress.  I will hopefully be building up the stamina over the coming weeks and will get advise from the missus on how things are looking.

Walter-Mc – it’s interesting that your reflux tends to happen 12 – 5.  How does it tie in with the eating?  Do you eat differently for breakfast/lunch/dinner?  Trying to find a pattern to what works and doesn’t is a challenge and google can come up with multiple answers – go for a walk after eating to let gravity do it’s thing and have a lie down after eating to slow down the movement of food through the stomach (mind you this is post-op).  I guess it’s a case of working out any patterns and trying different things both food wise and movement wise to see what works for you.

Apart from that – I am now 5 ½ months post op and 2 months post final cycle of chemo.  All good – I still have not managed 4 pts yet.

Cheers all. 

bfg

Hi Hills x 

tips for putting on the calories if using the Aymes actasolve savoury powder soup and Fortijuice drinks prescribed under NHS.

I think these tips may be out there already but.....

Aymes says add something like 200ml boiling water. The soup is both very thick and powdery and not at all tasty. So what I do is use a 500ml cup and add the portion of Aymes plus a much more tasty packet powder soup from our supermarket. (Not allowed to advertise names) Mix the two powders together then fill the 500ml cup up to the top with boiling water. Stir a lot and the water volume sinks a little, only then does it become a tasty drink plus you get more liquid intake from one drink. The other bonus is that with so much boiling water it takes ages to cool down to an undrinkeable temperature and can be sipped easily over a longer period.

My  friendly pharmacy unfortunately supplied 120 bottles of strawberry flavoured Fortijuice instead of mixed flavours. After a couple of bottles I couldn't stand it anymore because even as juice it is extremely powdery, and the only suggestion the upper IG team dietician would make was turn the 120 bottles into a jelly ( 1 year supply of strawberry jelly - I don't think so). So the trick is to get 2 bottles into one drinking flask topped up with water to heavily dilute and which removed the powder taste. I take the flask on long walks or even sip away at home, so again both more liquid and balanced nutrition with energy. 
 

I think these tips may apply to post op patients as well as myself in pre op chemo. 

Walter Mc 

From Walter mc

i will "digest" your dumping explanation over time. It was seemingly very comprehensive.
about the drinking bit. I love a whisky and occasional beer and wine, but because I am doing chemo I have 1" of unfinished whisky left in the bottle. It has been sitting there for 4 weeks.Before cancer I didn't buy whisky very often because it would get finished within 5 days. So now I have utter painful abstinence and am highly jealous of your beer drinking ! 
good to hear you getting on fine. Cheers !

walter Mc

Thanx, 

My husband is a bit of a rare breed (: He has not ever, I don't think, taken any of those 'fortified' foods. Can't even get him to sniff them. We too had loads of them, no longer, they now 'sleep with the fishes' LOL.  He can however manage 4 pints!. 
He does eat quite well, steak, had a huge Greek lamb dish yesterday, crisps ++, just had a huge hake from the chippy, but clearly it is not enough, or maybe I am , and he is expecting it to go on just as quick as I came off. It is the muscle mass that he needs to increase, exercise is unlikely to help as that means he will just burn off the calories !!
As for the whiskey- if we've learnt anything through all of this, it really is a case of a 'little of what you fancy does you good'. If you feel like it have it. Alcohol is not a villain in adeno ( is in squamous).

keeping the faith

Hilts

Hi Hilts and all,

It's been busy on here lol. Hilts so good to hear that you're getting to do normal things. As you know we are nearly 10 months and still going so hoping we can soon be out and about. 2nd cycle of post op chemo is this Friday. Your husband is an inspiration and very lucky to have had all keyhole as it doesn't appear to be common? Same op inside I know. . It was very unfortunate that Kev had to be opened back up after having keyhole on his abdomen but he's here!  Two stones lighter and trying hard not to loose any more weight. Going to buy cream cakes today! 

I get what you mean about 'jinxing' when life becomes so uncertain you feel you  can't 'assume'.

I have mentioned this before but just in case it's 'got lost' in the threads my husband has found the electric bed really helpful. I have too as I've been able to elevate my leg! Great for a cuppa too! We chose a super king (independent singles) so single bottom sheets but the rest super king  bedding.  You get VAT off for health reasons. We got ours from a local shop and it was made in Rotherham. I would suggest if anyone decides to look into buying one be a bit careful as some who come to your house can be very expensive. Anyhows we need to find an alternative for when we go away. I've looked at inflatteable wedges - has anyone used these?

Keeping the faith

Milly