New here please advise

[tanya69]

Hi I'm new here, my partner (male 50) had surgery for oesophageal cancer 4 weeks ago after 3 sessions of chemo . He just got the all clear and is cancer free for which we are so grateful. Has had a lot of issues , Mrsa bug , blood clot in leg, can't eat much ( has already lost 5 stone ) , reflux, nausea , extreme tiredness , aching joints, his front wound not healing , and now is losing his voice . Any tips or suggestions please

[brucemillar]

Tanya

Warning I am not a doctor. I had an oesophagectomy three years ago.

It is all cyclical in the early days (which is where you are today).

As you lose weight you get weaker, as you get weaker you get more infections & bugs and also suffer from the inevitable fatigue.

It does get better. It takes time, but it will get better.

The reflux, nausea and voice loss are possibly all connected. Reflux acid is very strong and will damage your throat. He needs to try and tackle that. There are many suggestions on here that wil help.

For me:

Don't eat after 19:00.

A small swig of Gaviscon immediately before bed.

I also found that the Omeprazole (if prescribed?) made me nauseous. I stopped that and the nausea stopped. But it does help with the reflux so it is a trial & error thing. If you can control the reflux you may not need the drugs.

When eating. Remember that your new stomach is likely to be tiny (smaller than the palm of your hand). So a portion of food needs to be that size or smaller and you must include fluids as they will fill you up. As your new stomach settles, it will reject anything it does not like. Keep a food diary and do not repeat (no pun intended) the bad stuff. Sweet stuff can be bad news (Reactive Hypoglycemia is common). It also causes reflux and makes us 'over tired' The issue is, that sweet stuff is usually what we crave and what we can easily get down us. Try and avoid it. A few Quality Street can have a big downer within 1.5 hours of eating them. So look for the pattern in timings. Mark this in your food diary.

Early Dumping is within 15 minutes of eating.

Late Dumping is 1.5 hours after eating.

In reality what is that like? Well for me. If eat a few chocolates at almost exactly 1.5 hours after the last one, my sugar level will collapse and so will I unless, I take glucose. The solution is 'not to eat chocolate'

Walking is good. As much as you can manage. Take your time and remember, on the way out, you have to get back. Do not overdo it. It helps your breathing and your legs etc.

Sleep when you can where you can. Who cares? Nobody, just have a kip (not when driving). The fatigue can be very upsetting, but it is a reaction to everything else that is happening with your new plumbing. Be angry, let it out. I tried to keep smiling and saying I was "fine" When I was anything but fine. Mentally that proved very draining and hurt my recovery. This is a 'life changing event' we are entitled to be angry that we here, and grateful that we survived. But surviving is challenging and does not stop when the surgeon goes home.

He is still very ill at this stage, very ill indeed. You will read on here many, many times about the "early days" that really extends out to the "early years". You do start to feel better in very small steps and the lousy weather will not really help. Like you I was home just before Christmas, I started to feel better about May/June time.

Summary:

Food diary Avoid Sweets & Cakes etc.

Walking

Sleeping

Good luck..

Bruce

[tanya69 in reply to brucemillar]

Thank you for your advice

[haward]

Are you using a wedge pillow? This can reduce reflux while asleep. The OPA has an offer going for these at present and they are very popular (600 so far). On eating use food supplements and add butter, cream, cheese to everything and ask the OPA for our recipe booklet.

and I agree with everything Bruce says. His advice is always excellent

Haward

[tanya69 in reply to haward]

Yes he is using a pillow wedge , and Bruce advice was very helpful . My partners problem is that he hasn't eaten since June, has no appetite at the minute, is eating small cereal for breakfast and some days soup ice cream etc. He has lost 5 stone and can't really afford to lose any more . He is on a nightly jeg feed

Thank you

[DeborahGale]

Hi, I am new here too! My Mum had her esophagectomy 25 days ago. I think we are at the same stage of the recovery journey! After advice and reading the posts, it seems it’s quite a long road. It is early days and everyone says it does get better, but takes time. Mum had a chest and water infection, which set her back. She is going through similar issues as your partner, lots of sickness, fatigue, weight loss and is quite weak.

We have to keep them positive, but it is hard to watch them go through such a rough time.

I wish your partner well with his recovery.

Debs

[tanya69 in reply to DeborahGale]

Thank you and I wish your mum well too. I agree keeping them positive is a very important part of their recovery but it is so difficult watching them suffer 😐 .

[xxBANJOxx]

Hi - I’m 7 weeks post operation 49 male, I didn’t get Mrsa but I can sympathise with how your partner feels, it is a slow road, things do improve sometimes I think they aren’t until I think back carefully a few weeks.

Bruce’s advise covers most things I could add, I hope his advice is useful to you and try and keep positive things do improve

Simon

[tanya69 in reply to xxBANJOxx]

Thank you and it's good to hear the difference a couple of weeks makes .

Best wishes to you

[brucemillar]

Something that I maybe should have mentioned that is worth remembering:

Stomach Acid (Reflux) is always there in your stomach (or what is left of it). It is there to break down and hep digest the food you have consumed.

Many people think, they are putting the acid into their stomach via the food they are eating so diet accordingly, when they suffer with reflux.

As I understand it? We suffer from reflux due to our surgery and the missing bits that are not there to contain the acid - that is doing it's job.

Some foods require more acid than others to be broken down and digested, especially non-soluble fats and many that use preservatives.

It can be rewarding to have a Google and look for foods that do not encourage acid or are easily digested? That said.... Volume is still King. If your intake exceeds what your stomach can handle (tiny amount) there are two escape routes. Upwards will bring up acid/bile, downwards will be very unpleasant and cause cramps etc.

If you have not been eating for some time your tiny stomach will be even tinier and more likely to object to being asked to stretch. Start small and work up over long periods. Persevere. Water is very good as it will flush any nasty bacteria that have found a new home.

Good luck.

[Pogul]

Hi Tanya, I had an oesophagectomy two years ago (I'll be 60 in February). I've read Bruce's reply, he gives good. sound advice. What he has written is absolutely spot on and I can mirror myself on that. There are times when I wished I'd never had the op it but we can't be thinking like that. Hang on in there, time is a great healer. I'll never be the same again however, I consider myself a very lucky woman. Before surgery I worked a fifty hour week.......post surgery I'm back to the same job doing a fifty hour week, sometimes more. Went through everything Bruce has written about; please give it lots & lots & lots of time.

I bought a wedge pillow from the OPA, brilliant!! I need to have four pillows on top of that, bottom two in a 'landscape' position; top two in 'portrait' position. Even in this position I can get appalling reflux that fills my neck & ears and I could cry but the wedge is good, I feel I'm sleeping on a good firm base. Gaviscon, as Bruce, says makes a good night cap.

Best wishes to you xxx

[tanya69 in reply to Pogul]

Thank you and I'm glad to hear you are doing well and back at work

[Hidden]

It is indeed good news that the operation has cleared the cancer.

In relation to the weight loss, we did a poll a couple of years ago

healthunlocked.com/oesophag...

So losing 5 stone is a lot, and a bit more than normal, but there have been others who have lost that much and more after surgery and go on to make good progress. It depends on what weight you started from. I know that losing weight makes you think you are ill, but as long as he can take in a reasonable amount of nutrition, and get used to a new body image, the weight is almost certainly not a big problem in itself compared to the other issues. Regaining weight is not a sign of making progress necessarily; but managing to eat little and often is. He may end up at a new normal weight that is a lot lower than you are used to.

Have a check on vitamin / mineral levels because that can be a cause of fatigue.

The voice loss might be reflux (in which case try plenty of Gaviscon Advance) but it can also be the result of not breathing properly (your stomach should go out when you breathe in; and vice versa) and it is possible that breathing more shallowly to protect the chest area and to avoid stretching the lungs and provoking coughing does lead to the voice / vocal cords being strained. So resting the voice and then doing breathing exercises might help.

The aftermath of MRSA is always difficult and he will need to keep on top of possible further infections. The slowness in healing is always frustrating but the body does want to heal itself, and it might just take a lot more time than we ever would wish.

[tanya69 in reply to Hidden]

Thank you and I think getting used to how he looks is a big thing for him and lots of people comment on his weight which isn't always a good thing .

[brucemillar]

Tanya

When I started to feel a bit better and decided it was time to venture out. I was invited to a live music gig in my "old" local haunt. That was just weird I walked in and it was like being invisible. People I had known for years looked straight through me and others walked past me without a word.

Simply put: They never recognised the new me. I lost so much weight that facially I had changed to be almost unrecognisable.

I figured afterwards I should have robed a bank the day before surgery.

But mentally it is tough trying to adjust to the new you and it is very tough on those around us who have to suffer the mood swings and anger.

Pogul, hits the nail on the head. There are times when we wish we had just not bothered with the surgery. These times pass, honestly. Like toothache, when at it's worst we see no cure and would do almost anything to escape it.

I am vegetarian (had been for years) but I suffer very little reflux and have never used a wedge pillow (smug gin as I type). I also gave up all alcohol after several failed attempts at trying to enjoy it again. 1) It bloats me. 2) I get drunk quicker than a quick thing. 3) My wife thinks I am a cock when I get drunk. 4) the hangovers, which massive, remind me of my chemo and I have no desire, ever, t be reminded of that again.

I have had to re-invent myself and find new ways to socialise myself that does not involve drinking (that was always a fairly large part of my life). I am fairly comfortable now and do not really miss all that.

Some months after my surgery, I developed diarrhea that I was sure would kill me. I was so ill, nothing stayed inside me for longer than 5 minutes, even water. Eventually on the verge of being hospitalised, my local GP came out to my home (I could not get out of bed). He took one look and insisted that I drink 5 litres of water per day, starting there and then. Within 24 hours I started to feel better and within 48 hours it was like I had never been ill. His view was that I had a viral infection and the water was flushing it out, it did exactly that. By then my weight was down to six stone!!!

So water is good.

Good luck.