Scared

[Myfrenchieboy]

Hi, I’m one month post op, Ivor Lewis I spent 9 days in CCD and 5 on the ward. At home now and struggling to eat due to no appetite and not feeling hungry. I’ve lost quite a lot of weight and hate the way I look. All skin and bone. I am scared of the post op Chemotherapy as I struggled before hand, only managed 3 flot. I try to eat around 6-7 times a day and take supplements but it’s so hard. Feel like it’s one step forward and two back. I so want to say no to the post op Chemo but I also know that’s silly. Is it just me that feels this way or is this normal?

[Tanktank]

I am 6 years post Ivor Lewis and 4 + 4 FLOT. I have been in remission for 3 years. Whilst the surgery and chemotherapy were unpleasant I lead a remarkably normal life. I have lived to see grandchildren born and sit on my knee., My appetite returned, I have exercised well and look pretty good for my age.

There are so many positives from the incredible treatment that is available. You may be in a dark place at times now. We all were but there is a very bright light at the end of the tunnel.

Stick with it and you’ll be amazed.

Good luck and best wishes. Everyone is rooting for you.

Tanktank

[Myfrenchieboy in reply to Tanktank]

Thank you to you and everyone else that had replied to my post. I can’t believe how many lovely people have responded. It makes such a difference. I am seeing the Oncologist next week and will go ahead and have the Chemotherapy. I will take all the advice offered on here and I will remain positive. Thank you again

[Cavalier3]

Good morning, you are very early days yet and I think feeling like most of us did in those first few weeks. I’m 3 yrs & 5 months post IL and treatment ending. I’ve never felt hungry since my surgery and it does make remembering to eat hard. My biggest advice is to try and stay positive. Get up every day and go for a small walk. Keep eating enriched foods every few hours it’s the only way your body can heal. I wanted to live for my parents and my husband, my friends and my family. It’s a battle but it’s one you will win. I lead a fairly normal life now. Apart from having a small appetite and getting a little fatigue now and again I walk miles with my dogs every day. I eat out with friends. I have had some amazing holidays in the last couple of years. Take baby steps, one day at a time. You’ve got this! We’re all here for you too.

[DonegalDreamer]

I am 6 months post-op and I can totally empathise with all of your comments as I felt exactly the same. Eating was a struggle but I persevered as best I could. I lost nearly 2 stone from my usual weight and most of this seemed to be muscle. Sitting on hard surfaces was painful as I had no bum left. I also dreaded my post-op chemo but I got through 3 cycles of it and then I started slowly building up my walking (I’m up to 4 mile walks now) and doing some exercises to rebuild muscle and I am much happier with how my body looks now. I know I still have many more months of recovery before I’ll be anywhere near as active as I used to be but I am getting there. You will too. It’s a long road but, as Tanktank says, there is light at the end of it if you keep your chin up and take one day at a time. Good luck to you. CB

[Molly14]

Try take it one day at a time - recovery is a slow process which is often like a rollercoaster - keep speaking about things to your specialist nurse - do you have a feeding tube ? Try get outside for a short walk daily, walking helps so much. I’ve had zero appetite since surgery and eat to the clock but appetite usually comes back in time. I ate a lot of mash potatoes, creamed chicken, ice cream in the early days. Losing weight is normal and hard to put back on. Hang in there

[Ilfc2022]

I also struggled with FLOT, I actually only managed 2 pre-op and then did a lot of walking and cycling to get myself back to adequate fitness for the surgery. The surgery went well, but I didn’t have any post-op FLOT, based on my T3N0 diagnosis and my reaction to the pre-op FLOT. It’s now over 2 years since the op, I’m down from 82kg to 65kg and it’s a daily struggle to maintain my weight. I’m also all skin and bone! Like everyone , I try to eat little and often, but it’s not easy, often very tired after eating. But I do maintain a relatively normal lifestyle, exercising and getting out and about, but unlike cavalier3, I don’t eat out. But I’m here, I’m not in any pain or discomfort, I’m seeing all my grandchildren grow up, and I shall be eternally grateful to the skill of the NHS team that sorted me out!

So hang in there, it’s not easy, but it’s worth it.

[Deeedals]

there’s no doubt that the post op FLOT is tough but you’ll get through it . My Ivor Lewis was June 21 and I completed my chemo in October 21.

There are a lot of adjustments to make and I have no appetite which my surgeon tells me is a common side effect due to nerves being severed/damaged in surgery.

I now eat by the clock and things with high calorific and nourishment values.

Believe me it all gets better and it’s definitely better than the alternative 🙈

I wish you all the very best xx

[kewl1]

I was lucky as my chemo did not bother make me sick. I had a choice between 3 or 6 months and I took the 6. I also had a choice between a pill and having a drip at the hospital every two weeks and then going home with a PIK line bottle for a couple of days. They said the pill was 95% as effective as the drip so I took the drip. I wanted the max of everything so that if in the end it didn't work I would not be saying "If only I took the max". I sat next to a lady in the waiting room who said that she chose 3 months because it made her husband sick when he had it. What? !!

My cancer operation was 7 years ago now. I ended up losing 65 pounds and have kept it off. I walk 45 minutes every night for cardio. That was the advice of the Oncologist. He actually said 30 min 5 days per week

Good Luck

[Vitex]

Sound normal to me. Chemo is shite but necessary. I lost loads of weight too and despite initial reluctance I had a stomach peg fitted, thank heavens, cos it really helped me get back to a correct weight. Good luck

[petercaron in reply to Vitex]

I am now one month from 7 years since my surgery. I had 25 radiation treatments and 5. Chemo before my surgery. The doctor after surgery and biopsies felt the operation got it all and I did not require additional after surgery chemo. I guess they were right as I just had my 7 year scan and all is clean

I lost about 40 lbs and probably 50 until I was able to start eating. Now consistently around 160 lbs I can eat anything I want, just smaller portions, so hang in there Like you , i never feel hungry, but I am eating 3 meals a day, mostly by the clock

There is really a very decent life after the first difficult year hang in there

I got a dog to help force me to walk it really increases my walking and is a very loving addition to my family

[Artiquety]

I am so glad you brought this issue up. I have had several weeks of chemoradiotherapy, then 8 days in hospital (being unable to eat), 5 days of home forcing (fortisips) any soft food down, before my Ivor Lewis operation on 23 June. I then had a chiley leak-another operation later, heamothorax in both lungs (having 3 drains put in), was discharged 2 months later with dvt, ecoli and Cdiff! Went back inside and finally came out of hospital on 28 August : weighing just 6.2 stone.

I am now 7 stone 8, stretching my small stomach was labourious, often being sick- if eating something with too much fat/cream/wheat content. I cannot eat and drink at the same time, unless I have an oatabix with half a bowl of soya or oat milk (which is fine, no issues). I can only digest soft fish and meat, no spices, with the daily omeprazole, gaviscon, multivitamin, vit d and blood thinners.

To read your below fan replies- certainly gave me some light- to the end of my tunnel (it has been touch and go in the past). But now it’s trial and error in what my stomach can digest, without regurgitating, I cannot bend down after eating. Even if I take small quantities-every few hours, sometimes gives rise to many aches and strains: in one orafice to go back the same way, or excruciatingly midway to go out the other end. It isn’t easy, oramorph takes the edge off, but my surgeon did say that it is one of the top major surgeries, that has more complications, than any other surgery to deal with.

We are all different, some have it easier than others, but we are alive, and still here to tell the tale, life is testing…..

Have faith, good luck, sending healing hugs out to you and everyone else. Thank you all for the encouragement and support given in here 😘🥰🥰🥰❣️❣️

[grandylynda]

I am 7 years post Ivor Lewis. Had all my radiochemotherapy before surgery. Recovery is HARD and I am still not back to pre op weight. But , I have a life well worth living. I think maybe the hunger sensors get taken away with surgery, I try to eat by the clock but can forget when I am out of routine. My advice is take baby steps, record your progress ( a friend gave me a pretty notebook for this purpose). Use you upper GI nurses, they are there for you and don't be afraid to ask for help with mental health if you feel you need it. My first 6months was hell but them I began to see light at the end of the tunnel and after a year I was back to trying 8 mile walks with my group. You don't say how old you are but don't take too much notice of other people's timescales for what you should achieve when. I was given a plan which had hospital discharge on day10. It was actually day17. I had a four month time scale in mind for getting back to voluntary work etc. It didn't happen. Make goals as small as making yourself a drink and feel good when you have done it. Only you can decide about more chemo but I can assure you that a lot of people come through and get a good life back

[kiddy]

Hi,

It is early days and you sound like you are doing everything right. It is a rollercoaster of ups and downs. I am 8years post op and chemo, doing well apart from a bit of reflux and dumping.

I remember feeling the same way after having chemo and op then thinking I can’t go through with chemo again. I did go through with it. It was hard on my body and had it adjusted. I live a good life although adjustments to diet.

I lost 3 stone but gradually put a stone back on.

Good Luck stay positive

Debbie

[worthbanner]

I would only add that you should try at least one post-op infusion. If you don't tolerate it well, your doctor will possibly agree to let you stop. Not the same situation but... I felt awful during pre-op chemoradiation (after 4 FLOT) and my doctor said I could skip the last infusion. The first year post-surgery is rough but you will learn the adjustments to make and be happier for it thereafter. I'm 9 years post-op and doing fine. Strongly recommend pantoprazole and Gaviscon Advance for the reflux.

[LondonMan]

Hi Frenchieboy,

Your “one step forward” is a giant step if you are now cancer-free. The post-op chemotherapy is extra insurance that it does not return. If you skip this second session and the cancer returns how will you feel? 4 doses of Flot is 6 weeks and then it fades away - just do it, get through it and look to the future. Nobody, absolutely nobody, likes having Chemotherapy. Post-op I was 8 weeks in hospital, I lost 4 stone in weight and was too weak to endure the 2nd session of Chemotherapy and I very much regret missing it.

2½ years down the road I still have no appetite and never feel hungry (“sensor” removed at surgery) and eating is just like taking medication – it has to be taken at certain times. But I am alive and I play a number of sports. Eating out is rarely enjoyable although tapas bars are good with their small portions. A goodly number of beers down the pub watching football is a no-no! Though I have expanded to a pint each half.

You have a life ahead of you and you want it to be as long as possible – beat the hated chemo.

[LarryLamb69]

Hi I am 6m post op, and finished my post op chemo (4 x FLOT ) 5 weeks ago, I would concur with nearly all of the prior posts, My system struggled with FLOT post op as my white cells (neutrophils) were always low, so each session got delayed a bit, my taste and want for food is just coming back in now, with portion sizes increasing to the point where I might put weight on!! For last few weeks it was enough not to drop anymore only...for context at start I was just under 11 stone, and I am now 8,8..I also hate it..being skin and bone, but just stick with it, remain determined to improve and you will, it will just be in stages and maybe not as quick on occasion as we would hope!..post op chemo is almost a must do if able, I know some don't but why take the risk when you have put yourself through the mill already, not going to sugar coat it, it was a tad more draining than preoperative chemo, but still manageable with a sense of humour and positive outlook!!..all the very best and stick with it..you will get there👍

[walking-in-wales]

Five years on from post-op chemo & doing well having been "signed-off" from oncology earlier this year. Never going to be the same as I was but have regained some weight. I had a different, but similar combination of drugs to FLOT & suffered most, if not all listed side effects to varying degrees during the post-op series such that dose of the cisplatin / epirubicin were reduced.

The nausea was awful, but I managed to work through it & things did get better over the following months. As others experiences described here, it can be very hard, but persevere if you can & seek support if struggling. My wife was my fantastic support.

Rest as much as you need but try to exercise as you can. It took me several months to appreciate food more than just a necessity. Taste was affected & I developed a lactose intolerance which subsequently faded.

I now have 3 (small) meals a day with "snacks" inbetween.

Take care & good luck with it all.