I am completely new to this so please bear with me while I figure out how to use/ message!
My dad was diagnosed with oseophageal cancer in February and had a minor op where it was removed via endoscopy
Unfortunately we were told on Friday that it was not all removed and what they are recommending is the Ivor Lewis operation- we have no set date as yet but will hopefully find out on Tuesday!
I know this is a big op and the recovery is long . I want to be able to support as much as I can, the op in itself is a big deal and the side effects and recovery sound very hard to get through so any practical advice or tips would be most appreciated!
how long will he likely be in hospital?
Any tips/hints about dumping syndrome and how this is best managed?
Any particular foods to encourage or avoid?
Lynsey x
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Lynsey2601
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I have just posted a similar reply on the McMillan forum, but here goes...
My Dad is 56, he was diagnosed in December after a few inconclusive biopsies.
He had 3 cycles of ECX and then 7 weeks break before his op on 18th May.
My Dad was in intensive care for 6 days and in hospital for a total of 13.
I won't lie, recovery is tough.
My Dads surgeon said he could tell that my Dad had managed to keep himself fit before the op, this is worth knowing.
His op lasted 9 hours. And it was 9 and a half before we knew he was ok.
It's a hard day, but a necessary one.
He has been out of hospital just over a week now and has a feeding tube over night. He has lost around 10lb so far as he has had diarrhoea and can't really eat much still. The diarrhoea may be down to dumping syndrome, we haven't quite got to grips with that yet. My mom is making a food diary so hopefully we will start to notice a pattern.
He has also had a chest infection.
It's not an easy ride and the surgeon told my Dad it would be like running a Marathon.
He was not far wrong.
My Dad is quite a strong and determined person, so hopefully this will stand him in good stead.
My Dads wounds are slowly healing, he is building up his exercise and is able to walk around the block now, he has eaten a few things that have taken his fancy and he has been having a little more sleep over the last few nights.
The best advice someone gave me on here was to tell him to get fit and get fat. As awful as it sounds, so far it has been worth doing.
Everyone is different and there are some really positive recovery stories out there.
I bought my Dad the recommended wedge pillow, but I think that might be more useful later down the line, at the moment he struggles to get comfortable with a wound on his back and his front, and a feeding tube in the middle.
We have found lots of squashy comfy pillows help at the moment, although he is currently sleeping on the sofa as it stops him from rolling over.
I hope that your Dad recovers quickly, sorry I can't be of much more help.
Hi Amy- thanks so much for your reply and it is helpful!!! Thanks for being so honest as it will help know what to expect although as you say everyone is different and will recover at different rates
My dad is 57 so they are a similar age and he's quite determined but I think apprehensive of what's to come understandably
I had read somewhere about the wedge pillows before! So that's good to know and a good diary is a great idea - I will pass that on so we can maybe pinpoint the foods that don't agree
thanks so much for your response, it's sounds like a slow recovery but also sounds like your dad is very well supported and getting a little better each day Which am very glad to hear
I will keep you posted- thinking of you and your family
If you are to support your Dad in the manner in which I am sure you would wish then you need to be very well informed.
This site is the definitive source of info regarding Ivor Lewis but it is an enormous subject, mainly because there are so many varied aspects and every patient reacts differently and those reactions themselves vary in a random and confusing way, making it impossible to give succinct, meaningful advice in a few lines or even a few pages.
If you slog through the last two or three years of posts you will know almost as much as your health professionals; critically you will have heard the views from the widest possible spectrum; from those who sailed through the op and afterwards with little or no difficulties to those who have suffered greatly.
This will empower you to recognise and respond to each and every event during your Father's convalescence.
You can of course come back here at any time and we will do our utmost.
Thank you for this it has indeed been so useful to read through others stories and you're right I think it has highlighted just how different peoples experiences are
Lynsey
I think the silver lining on the cloud is that it sounds like your dad's cancer was caught in the early stages. Otherwise they would not have tried to remove it endoscopically. So the prospects for a positive outcome are good.
It is not automatic to suffer from dumping syndrome. There are people who seem to progress after this operation very much better than others. So whilst it is important to be realistic about the time it will take to recover reasonable fitness and strength, it is also important to retain some optimism.
Some surgeons recommend 'get fit, get fat' before the surgery. It does take its toll on one's resilience so getting as physically fit as possible would probably help. There is some good advice about dumping syndrome on the OPA website including factsheets opa.org.uk/pages/factsheets...
Your Dad may, or may not, need chemotherapy. It all depends on the stage of the tumour.
I would seek advice from a specialist dietician if you can, and try experimenting with low glycemic index food before the operation. Making adjustments to your diet beforehand is sometimes easier than doing this afterwards. But it can be really tricky to try and adapt to not eating sweet food when you are feeling rough after the surgery and are also trying to combat the insulin spikes that dumping syndrome can produce.
But there are many people who have had this operation who are still around enjoying life many years afterwards. David Kirby, who founded the OPA in 1985 is still alive and well, and there are plenty of examples of people enjoying life to the full many years afterwards. If you and your Dad want to speak to somebody who has had the operation I am sure the OPA helpline will be able to put you in touch with someone from your area (0121 704 9860)
Thank you for the extra advice- I was reading a lot about dumping syndrome and how people have struggled in various ways so I will take the suggestion to try and change diet prior to surgery and try and implement that!
Although everyone has their individual journey what is really making me feel positive is the responses I have received and as you say there are plenty of examples of people who have undergone this surgery years ago who are leading full and active lives
I had a Transchiatal Oesophagectomy in London Bridge in 2014 for Oesophageal Cancer. They removed 75% of my stomach and all of my oesophagus.
Amycaz and her father are a great source of help and inspiration for you here as they have gone through what you are about to. I can add little to what Amy states in her reply.
What I would say maybe states the obvious. You have to come through this and need to keep that at the front of all your thinking. It is a small part of the journey and soon over.
I spent 10 days in St Thomas's before returning home. I now am back at work full time and enjoying life.
It is not easy, mainly because we are all so different. What one person can eat, another will not tolerate. It is a learning curve and you learn quickly what works and what does not. It is helpful to keep a food diary with EVERYTHING that you eat and drink and when.. That way if things go wrong you can readily find the trigger. Dumping is a mechanical process, so happens on a clock. What you eat at 09:00 will start to cause problems by 09:15 (early dumping) or 10:30 (late dumping) this does vary slightly, person to person. But 1.5 hours is a good guide.
The good news!! It is manageable and treatable usually be self control and recognising what the triggers are. In the early days it can feel like it will never get better, but it does and it will.
My wonderful surgeon - James Gossage, told me "If it wont go down a plug hole? It wont go down you" That is very true. So avoid things that would get stuck, until you get confident. Bread, cake etc.
Well that's a Mantra that I'll be sure to remember!
It sounds like you have been through quite a journey yourself and so glad to hear that although it can be hard and a bit unpredictable at times you're back to work and enjoying life
The food diary seems to be a running theme which is really really helpful
It's very true- we have to come out the other side and we will, just have to be sure to remember that on the more difficult days
Thank you so much for taking the time to post - will keep updating
Most people's experience will be different in terms of pain, dumping syndrome, etc but there are some fairly common things to note. For your information I am about 18 months post Ivor Lewis and I was 52 at the time - relatively young to be having this op. To specifically answer your questions:
At least a week in hospital. Depends on your Dad's fitness. The fitter he is the better, and the sooner he will be allowed out. And eat to take a run-up at the post-op weeks.
Dumping Syndrome. Varies. He might suddenly find he's lactose intolerant (stomach cramps, diarrhoea) but luckily you can buy Lactose free milk. Too much sugar in one go will give problems about one and a half hours later (like a hypo in a diabetic), as could high carb (sugars in waiting) foods like potato. Sweats, feeling faint and wobbly. Keep some Dextrose tablets to hand. Early on, anything above about 5g in one go could give me problems. Luckily there are diabetic jams, ice cream, and sugar-free products around now. It gets a bit better over time.
He won't be allowed any food or water in hospital for a while, then will move up to very small amounts of easily digestible stuff - soups. It's a long and gradual process. He mustn't rush to eat or drink too much as this can pull the stitches apart. Sometimes you don't know you're full up until you're full - so little and often. He may feel bloated ten minutes after and will need to sit down after meals.
Toast rather than bread. I found crumpets good and easier to digest with liberal amounts of butter! Porridge. Further along - fish, chicken, salad, brown rice. Berries rather than whole fruits. You'll find tons of material on here and elsewhere.
The area to his side will feel painful for some time - months for me. Mine still twinges and lets me know when I've overdone it. Don't do any heavy lifting - he might feel okay at the time but may have problems after. He'll have had major surgery in there and it takes a long time to heal. I found one of those small square (about 12") electric heatpads useful at night and sometimes in the day for some symptom relief. And invest in a foam wedge for the bed, or better still, an adjustable bed.
Thank you for posting- hadn't thought about a heat patch before but it's all these practical hints and tips that can help me be as supportive as I can be!
I'm sure we will find out food wise what agrees and what to avoid- although I will need to do a bit more research on the slow release sugars (thanks for the potato tip) Know that changes will be gradual like you say and need to be sure to bear that in mind as I'm sure this process can get frustrating at times!
Hi Quicksilver I posted a similar question to this before but don't remember getting any replies. Is there a link between this op and developing dietery based diabetes? I have had the odd spells of feeling shaky and having cold sweats accompanied by a craving for chocolate!! Eating the chocolate seemed to resolve the issue. You talk about 'like a diabetic' and diabetic jams etc, is it that we develop diabetes?
Hi Eileenq. Sorry if my reply was misleading. I meant you could develop diabetes-like symptoms but not diabetes. A bit like being very sensitive to the amount of sugar you can tolerate. And as there are quite a few low sugar (often branded as suitable for diabetics) products around you can still enjoy a sweet tasting product. The chocolate is resolving the temporary issue of insulin levels, as would a Dextrose tablet which is what I normally carry around in case of any of those symptoms you describe.
Hi, Just a quick input on this thread. I am a fit 63 year old who after three cycles of chemo had my op in Wrexham 10 months ago. I lost almost 4 stone in weight as I had a lot of muscle going in and that disappeared after the op. It's hard to offer advice on recovery as he will have so many different feelings, dumping, hypo, dizzy, weak and probably depression but that came on to me after my last post op cycle of chemo . As I had keyhole surgery my external condition was really good and ten months down the road I am walking up mountains and back in the gym, although a session on the golf driving range was probably a stupid idea as I still have two broken ribs which are now really sore again :0) My advice is keep talking to the hospital staff and read this site and don't google anything :0) It is a tough road but it's also achievable, just tell him to take it easy, when he's well enough to do something then try it but not to be disappointed if he struggles. I am still having stomach troubles but basically it's a completely new lifestyle and things have to change. I eat whatever I want now obviously in smaller amounts and if I go out socially I love whiskey & Dry Ginger which I can have a few of and feel great doing so. I have skirted through this as it's so easy to get bogged down, follow the advice but most important be positive, my motto is 'You can't crack me cause I'm a rubber duck' This is my first visit to this site and will definitely not be my last, good luck and take care. Mal
Yes this was my first post and have to say am so relieved to have stumbled across such an informative group
I honestly feel much better informed although am sure there will be challenges but just makes things seem that they are definitely achievable to hear others stories as unfortunately I did Google and I work in a hospital (not in this area) I have since not gone near google and stuck to reading experiences and advice which is much more positive and offers practical tips!
Oh dear am sorry to hear about the golf- but that will be more tolerable in time am sure. It is a lifestyle change and I think mentally that will be difficult but there is no other way- has to be done
I am sorry to hear about your dad's diagnosis, but hopefully with it being in the early stages the prognosis will be good.
My husband was diagnosed with OC in May 2016, T3 and spread to lymph nodes.
We found the waiting to go into hospital (8 months, due to internal bleeds and other complications), and coming to terms with the diagnosis was as stressful as the op itself. getting fit is a good way to go, and gives you something to focus on and it really does help with the recovery.
Dave had his op early January this year, and phsically has done brilliantly. he is back at work and will be back full time from next week so am incredibly proud of him.
His eating still suffers and he has to go every 4/6 weeks for dilation. The surgery is life changing, and coming to terms with a new life is hard, but everyone on here understands and there is some really good and positive advice.
Good luck to you and your family and keep us posted as to how things are going,
Thanks for responding- am glad to hear your husband is doing so well and is back to work that's fantastic news
We will get more information tomorrow about a timescale for things happening and am hoping it won't be too long
Am Glad I've joined as the discussions I've read through and the replies I have received over the past day have been full of advice and practical ways to support
Will keep you posted- I hope your husband continues to go from strength to strength
Hi Lynn, I like so many other had my IL operation a few years ago in 2009 (22 Dec) and was in hospital for 13 days, I prepared with gusto putting on almost 2 stone in weight to get up to 15.5 st before the OP and went down to 11.5 after and am now a steady (ish) 11 st 10 to 12 st. I found the best thing for me for sleeping was investing in a very comfortable reclining chair, I found it easier to get comfortable and used it for over a month before going to my bed. I returned to work albeit 1 day a week after only 3 months! but please be aware that it really does take it out of you and if I am honest I did too much too soon. My wife was brilliant being totally supportive as to my need to return to work (I had been in the forces for over 20 years) and needed to be at work even if I wasn't doing anything productive. I am now over 7 years post op, I have retired early not due to ill health but due to the fact that life is too short and we need to have a decent work life balance - cancer at least taught me that lesson I now wonder where i ever got the time for work anyway being kept busy every day. I still get pains now, still occasionally get dumping, but when you consider the alternative I will always be grateful to Prof Barr and his team in Gloucester for doing such a great job in giving me a second chance to have a life. I am sure your Dad will do well with the support of his family and a little preparation life will soon be back on track, It is not an easy road but it is definitely one worth travelling along when considering the alternatives. Best of luck and keep us informed of his progress Best regards RAy
Thanks for responding! Dad has his pre op assessments and met his surgeon on Tuesday- as well as a dietician, a physiotherapist, specialty nurses etc
I think he is a bit more emotionally prepared for this having had that input and feels reassured there is a team of people behind him!
My dad just retired in march this year- and got the diagnosis a month before, it's definitely not the year he and my mum had planned however like you say in the grand scheme of things it will be worth it
Glad to hear you're doing so well and are enjoying your retirement with your wife- just right too
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Bad dumping incident?
