POST Oesophageal cancer - 18 months on

Hi, not been on for some time now, i was told in Jan 2018 that i had cancer, Type T1T3N2.. what a shock. Had a heart condition and thought i would most likely die of a heart attack one day, then when i got this, thought , ohh noo,,, that's me done for,

I was very lucky,.... the tumor was large and they gave me chemo to shrink it, had to do this before they could remove it. If the chemo didn't work, i would have been terminal. It worked and i had my operation in May 2018 at St.Thomas's in London, under the team of James Gossage, my surgeon was Miss Cara Baker.

Took some time for me to be able to eat, everything seemed to stick in throat,, i had 3 stretches done,,, i also should have had 4 more chemo after, but had 2 and suffered very badly this time, lost my hair, not a problem as that would re grow, no big deal. But this this time, though same chemo they said, i got terrible ulcers in my mouth, could not eat, drink,, they were everywhere, and thrush in the mouth,,,

It took some time for Guys hospital to sort this out, and give me drugs to help, finally one day i took myself there, and they took me to a unit, put me on drip, dehydrated as could not drink, so sore,, was there all day,,,,, finally they gave me loads of stuff for the ulcers,,,,why had they not given them to me earlier after 1st chemo after my operation?

So they only gave 2 chemo's not 4, due to the problems i had.

I also,, and i wonder if anyone else has this problem,, got BAM after my OP!!!

It is chronic diarrhea, body cant absorb fats now, this is a nightmare. Was so scared to leave the house,,, was like i was in prison,, when i had to go to hospital for checks, i dreaded being caught out,, sooo many near misses. I now have powders to take for this,, but they now are not being made, as the company who made it,, have sold out to another,,.,June 2020 it seems before UK get some they say. Told my Upper GI team,,, as i still cant swallow tablets ( now 18 mths on) they tell me at GP's that im not allowed to crush the tablets?

WHAT WILL I DO, the team has not got back to me at Guys? I see them again in Nov 2019,.,, I feel like ive been slung out in the cold,

I still cant eat meat,.,. it seems to sit on my chest or in my throat,,, just managed now, 18 mth on, to eat some salad items, and fruit, but have pout on allot of weight?

Id like to ask any others on here,,, how were they 18 mth on? Do you have these problems?

I think i am DUMPING, maybe eat to much in one sitting, not that it feels like i am,, still getting hang of how much i can eat before i feel sick.

Was to see Dimbleby cancer helpers,, upper GI team put me forward in abt April 2019,,, heard zero,, rang abt 3 mths later to ask about it,, she had forgot?

So been told i have now had name put forward,,, seeing Physios now,, as lost much muscle in upper body,,, he also has put name forward, still waiting??

Just had a CT SCAN, so wait results,,, this is another thing that worries me,, was told that we don't get FOLLOW UPS , CT scan checks for this type of Cancer? My sister in law does for her breast cancer!!

When i asked why was told they dont do for this one,, so i asked,, how do i know it it has returned? I was told you will get pain!!!! NICE, THANK YOU,

I had a CT early in 2019, after the op , after the chemo, after i didnt go see the cancer team, re diet, and oncologist anymore,, but assigned to the Upper GI aftercare. On results, it mentioned a NODE they were keeping an eye on? NEWS TO ME, so i asked abt this, and if there is something they keep a eye on, should i have not been told?

I insisted to see Oncologist when i spoke to Upper GI team, as they were not really giving me a answer, or one that i understood, so say Oncologist again, around April, may 2019,, yes there is a small node, all ok then, but keeping eye on it,, well if that was the case, why was i not told, and IF as i was told they dont do follow ups on this cancer, re CT SCANS, how the HELL can they keep eye on it?

He consented to give me another CT in 6 mths,, that's the one i have last week,, We will see if it clear,,, i presume if bad, they will call me in,, if i dont hear, i presume they will tell me good news in Nov this year when i see Upper GI team,

ANOTHER QUESTION if anyone can reply,,,

I get often, pains/aches around one of my scars, the under the arm, back one,, my neck and stomach ones are ok,, also the ache as i call it,, as not required medication for pain for it as yet, also comes under my right breast, and my chest feels really tight!! My breathing is very bad,,, and my cardiologist says its not my heart?

I have had 2 lung function tests, cardiologist advice, so GP sorted this for me,,, first x ray thought was a shadow,,2nd x ray month or so later, showed all ok,, but my GP has now recommended i see a LUNG SPECIALIST, just incase?

I have been very upbeat during all my illness,,, my way of coping was to tell all to everyone,, all over my FACEBOOK account,, pics of me in hospital with all tubes, my baldness,, thats me,, i have to get it off my chest.

I am now quite run down, and bit depressed, as to me, i thought i would be ok by now, able to eat properly, but the breathing is the worse part,,, and i have an idea the powders i take for BAM,,, cause some of this ,,,, but why sometimes when i eat, it seems to stick and hurts a little,,, IN MY BRAIN, it says, maybe cancer is back, hence after eating it can , NOT REALLY HURT, but becomes uncomfortable?

See, i didnt have that problem b4 i was told of the cancer,, the pain on eating,, i had pain in shoulder blade,, thats how i found out,,after x rays etc etc then finally a camera down,,, so is this feeling i get at times when eating, a tumor coming back?

Maybe all in my brain,, but until the results of CT who knows,,, if nothing shown on CT, then what is the problem?

Would love to hear if anyone else had similar things happen to them???

Pic is of when i went bald,,, lol

[slobjohnb]

I am 21 months post Ivor Lewis, pain in my right chest/ribcage which moves around, sometimes under the right nipple. Now pain in the left lower back, not so much pain as discomfort. Of course you think it's cancer coming back but I keep being told it's not. It just makes you worry. Other than that I am very lucky and quite healthy, putting on weight now which I don't really want so no more chocolate etc. Good luck to you, I hope you begin to feel a lot better soon.

[kiddy]

Sorry to hear you are feeling low. A lot of your symptoms about pain in scar is normal. I attend some of the OPA meetings we discuss symptoms and a lot of people still get pain in the scar under arm. We have been through a major op bigger than heart ops. The pain can be referred pain like if you overeat i get pain under my arm. Cold weather doesn’t help.

I take creon which helps with the loose stools ,it helps digest food

. When your stomach is pulled up it sits high in your chest wall so everything is squashed in more, this might not help with your breathing.

Dumping look at what your eating and drinking. I can only sip water with meals otherwise it causes dumping. Child size portions is normal amounts.

Be careful with full fat. I cant eat ice cream, yoguart some full fat cheese and fatty meat this causes me dumping. Also sugar like cakes can cause problems. I also and many people have problems with the digestion of some meats causing reflux at night if eaten too late.

Exercise is a must i built up from walking t no attending a gym 2 to 3 times a week. I did have help from Macmillan exercise see if they run anything in your area. My right side is now much improved.

I hope you have positive news.

Best Wishes

Debbie

[jeffw663]

I also have started on 'Creon' which is a great help with digestion and improved bowl movement no end.

Also advised no further endoscopy following I L which I am happy about, I'm now 16 months post op and am eating quite well as long as I don't over eat.

Good luck

Jeff

[Gary61]

Hello Yvonne just want to send you big hugs and keep feeling positive x

[liz_crisp]

Hi I am nearly 10 years post op, you are actuallŷ doing well, it takes a long time to get over the effects of this op and the treatment normally takes about 9 months to a year. Then at least another year to build you strength back up and adjust to the new you. Remember your system is starting again to learn what to do with food, it's also getting over being poisoned by a lot of Chemo, but you are still here. it took a while for my system to cope and it kept changing as I got better but if I got too tired it would seem like we were back to square one, food going straight through or not actually moving through at all. I ended up in A &E a few times as I had just got so tired my body had said no just stop. The pain in my chest and across my back was from nerve damage during the op I got some nerves cooked which helped a lot but agin if I get tired I still get a pain when I do too much or sit in an office chair for too long. I take dissolvable pain killers still as normal tablets burn sometimes if they get caught on scar tissue.. I buy them from the chemist . A hot water bottle helps too. It took me many years to put on weight , I also took creon for a while to help with fat absorption it does work but you have to take it with a meal not before but after a couple of mouthfuls so it is with the food, or with something like applesauce before you eat apparently. I graze all day when I'm at home to keep my weight up, as when I'm out and about a lot I find it better to not eat lots and if I'm working I try to just have liquids . The chemo fatigue is still there when I get too tired so I manage my energy and have learnt to be kind to myself. I did get very down and depressed as well it was a mix of grief and realisation that life was not going to go back to what it was before and I had to accept that. Also I felt guilty about surviving and feeling so sad because I thought I wasn't doing well, you can't rush recovery and you have to give yourself time. I moved to Norfolk from south Essex 3 years ago and the slower pace of life has been fabulous, I have put on 2 stone and kept it on, I do more exercise and feel stronger but it's had its up and downs I got too tired and ended up with puenomia in the summer of 2018 as I was doing too much again, I still get dumping but I have learnt to cope with it. I find that stopping eating when my bowel goes nuts and I can't be too far away from a loo and then eating very small amounts of plain food not a lot of sugary food or high carbs and no orange juice, coffee baked apple, bananas rich pasta dishes or foods that I know will give me late dumping or stomach cramps. It's different for each one of us but you will learn to recognise them. A friend has problems with pastry, fried foods, and milk so she cuts them out for a while, I drink hot water and fresh ginger rather than tea for about a week and let my system calm back down again. Codine phosphate works better for me than Imodium. I take an iorn tonic just a few drops on my tounge a few times a day as lack of iorn makes a big difference to how you feel but supplements can create havoc with your gut. Not all the time just when I seem to be run down. I also take meta tone a vitamin tonic occasionally if I'm feeling run down. I find liquid medicine and vitamins much better. life is great and i am really enjoying it, I have learnt to be kind to myself and to accept I function differently now than I did before, and it's actually better than before.

Hugs Lizzy

[Steve101]

I think you are an exceptionally strong lady!

I am sure things will get better for you, big hugs over the ether ........

Steve

[Bazzer2003]

So sorry to hear of your problems...think I am on step one. Got all the symptoms and appointment to see oncologist 6th Feb Best wishes