Operation apprehension

1. As for the operation itself I'm sorry I can't give any advice as my mother had jaw reconstruction to remove cancer.It will be tough on the both of you but any extra time together is a bonus.

Hi, it’s only natural to be worried about surgery but sometimes the alternative is even worse.  My husband had an oesophagectomy in 2009 after an awful prognosis the year before and he has just come in from the garden after rearranging plants!  He eats very well and hasn’t had any problems over the years beyond needing the occasional throat stretch in the months after surgery.  I really hope your husband will opt for surgery, he’s lucky to have you by his side encouraging him.  Take care.

J x

My husband had surgery in June with flot chemo both before and after. He was eating really well in the run up to surgery after struggling until he started chemo. He also eat really well after surgery, can eat much in one go so is constantly grazing if you like, most people I think struggle eating as they don't feel hungry but he was the opposite always hungry!

I don't know how old your husband is, but Rob is 48 and wasn't prepared for quite how tired and frustrated at how little energy he had just after the op, he's always been a runner so has always been fit and active. 

Hes lost his appetite a bit from having the chemo, taste buds aren't great but getting better daily, hasn't been enjoying food quite so much. He's walking lots but still struggles with up hill, if he over does it he will more or less sleep the following day, but he's never been one for just chilling out so makes himself do something each day.

For us as soon as they said surgery was an option, Rob took it, we'd been told it was edge of operable, so surgery was our life line. He would have the surgery every time if you asked him.  I hope your husband makes the right decision for him x

Hope all goes well, take care x

Hi, I can understand your husband's concerns, I was a smoker for about 45 years and the idea of having my right lung deflated for about 9 hours didn't appeal to me. Tell him to ignore the statistics,if there was 49 poor men in a bar and Bill Gates came in for a drink, the the average wealth of each man would be over a billion dollars each. I didn't have treatment prior to surgery, I was 57 years old and not very fit. It takes time to recover and eating is a new learning adventure. It is worth having the surgery in my opinion, I am enjoying being able to eat again. I had some fatigue problems and still get random food dumping episodes, they are a nuisance but not serious. Good luck and kind regards, Frank

Thank you to all for the comments. It's a great help and he will have the op.  Think it was just a passing thought.  It's going to be a long couple of weeks till THE day but we're mostly positive. Thanks again.

Halfpenny, I'm pleased he's chosen to have the op, it will be a very long day for you, so keep yourself as busy as possible, Rob went down at half 8 and surgeon didn't phone to say all had gone well until 6.30pm, the op itself was over 8 hours, he then went to hdu after recovery at 11pm so didn't get to speak to him until the following afternoon with a bit of a groggy phone call. 

Wishing you both all the best, look after each other

Maria

Thanks Maria, Yes I've yet to decide what I'll do with myself! We've just had all the info through re eating before and after the op. He likes his food so I'm hoping that it's not going to be too traumatic for him.  He's a bit older than your husband (20 years on him) but is active and continues to work - like your Rob he likes to keep busy, which has been his saving through all this so far.  He knows he will feel drained for some time, but hopefully will cope. He won't have to have anymore chemo or radiotherapy after, so unlike Rob his taste buds won't be affected. Hope they settle down for Rob soon.  Steve's did go strange when he had it and he had cravings for food then didn't want to eat it ever again. Hence, a cupboard full of crackers!!  Maybe I'll jump in the cupboard???? Trying to keep smiling. 

All the best to you too 

Hi Halfpenny,

I was in a similar situation to your husband 2 1/2 years ago. I had my oesophagectomy at the end of May 2018.  I can totally empathise with your husbands apprehension, I felt the same.  Following the chemo and radiotherapy I had 10 weeks of recovery and getting fit for the surgery and felt really well prior to the operation. I was told by my surgeon that it would be life-changing surgery - my primary concern was that it would be life-saving surgery. 

There’s no sugar-coating it, the surgery and recovery is a very hard gig. I was in hospital for 8 days, 4 months at home recuperating and then back at work - with hindsight that was too early, I should have stayed at home for another 2 months, but with two young children I was keen to get back to some sense of normality.  In terms of physical pain the most difficult thing I found was the two ribs they broke as part of the upper-surgery, but once they had started to heal (6-8 weeks) not much pain. Although I would say it was 18 months before I started to feel back to my old self physically and mentally. In the big scheme of things that’s not too long if you know the end result is a positive one.

Undoubtedly adjusting to the new way of eating is overall the hardest part of this process. Initially your diet is quite limited and you have to take 30-40 mins to eat a meal, which isn’t easy. You have to have 6 small meals throughout day rather than the traditional breakfast, lunch and dinner. The reason for this is your digestive system no longer has the valves controlling your foods entry to the digestive system, it work’s purely on gravity. And if you eat too much or too fast, or drink while you’re eating everything gets pushed through your system too quickly and it causes a not very nice reaction referred to as “dumping syndrome”.

Importantly your husband needs to know this situation does improve, your smaller stomach stretches and your ability to eat a wider range of foods gets better up to two years after the surgery  - although some foods (overly sugary substances - cakes with cream and icing) will remain no go areas. Everyone is different and he (with your help) will need to (through a certain amount of trial and error work) find out which foods work for him. Carbs tend to break down into sugar too quickly and aren’t great, so if you eat carbs you need to go for for the complex carbohydrates like wholemeal bread and wholemeal pasta. But you will be assigned a dietician who can guide you on all of this.

He also needs to be prepared for significant weight loss and probably a new wardrobe too. I was/am a relatively small guy and I went from 70kg to 54kg, which is a bit depressing. However, I have now crept back up to a healthy and leaner 64kg.

The good news is I now lead a relatively normal life.  I work full-time, cycle 10 miles a day and feel as fit (if not fitter) than I did prior to my diagnosis and surgery. Yes, I still have to be careful with my food, but can eat it in 15 mins and my capacity has increased significantly . You do need to rest for 30 minutes after eating. He will need a wedge for his bed to keep his torso slightly raised to prevent stomach acids coming into his throat where the sphincter valve has been removed. Some people invest in a new electric bed. Less expensive options: put a couple of bricks under the legs of your bed. I personally use a pillow wedge which I am now used to. Life is great, and the dark days of my diagnosis back in Feb 2018 now seems a long time ago. Even the surgery and treatment seems like a distant memory.

All the very best - your husband and you can do this - there’s life after this cancer and surgery. The fact that he’s having the surgery means they think it’s curable.

Best of luck

Shadwell

Hi halfpenny , so glad to hear the surgery is going ahead I also had a wobble and told myself I couldn’t do it ,but I did in January 2019 and although I have needed a few stretches due to scaring I am doing really now now lost 2 stone but feel better for it . Brought a new wardrobe of clothes but now have had to go on a diet as the weight is creeping back on , so grateful for still being here and hoping it never returns wishing you both lots of luck come.

It's a worrying time that I can sympathise with, having had my operation in March 2019. Rest assured though, surgeons do brilliant work - many folk in the Oesophagal Patients Association are well into double figures in years since their ops and are doing really well. I have been through the recovery period - your husband will need best part of a year post op to get over it fully, so be patient. Tell him to follow dietician's advice but eventually he will be able to eat most things again (as I do) Strength will return - importantly lung capacity will return. I do a lot of exercise and physical work around the house without getting out of breath. Stick with it, honestly, it will be worth it!