How to regain a positive attitude - Oesophageal Patie...

Oesophageal Patients Association
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How to regain a positive attitude

4.5 months post Ivor Lewis, my husband seems to be in denial as to how his life has changed , he is angry and frustrated that he can’t do things as before, he has no enthusiasm to do jobs etc which he did without thinking before his op because he knows he hasn’t the stamina to spend hours on one thing. He is disappointed in that. I have tried to explain that he needs help to get his head round it all, but, typical man that he is, he feels he should be able to cope without help. He say’s it’s frustrating that He is ‘sitting about’ waiting to feel better so he can tackle a small job. We are both awaiting some counselling and trying to get an appointment with his GP to discuss this. I keep trying to encourage him to accept the new him, and embrace his new life. Anyone got any tips, we’d be grateful to hear.

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Hi,

I am almost 12 months post Ivor Lewis. Life is completely different in every way. If your husband was hands on before there is no reason why he can't get back to some of the easier tasks he used to do without thinking. I was a mechanic on buses and coaches for thirty years before diagnosis, I could not do that any more so I have lowered my sights to motorbikes and scooters as the work is lighter and more manageable. If your husband got himself a little book and wrote down jobs that need doing around the house so he can set himself smaller more manageable regrets. We are the lucky ones to have actually had the operation and been given the chance of longer life all be it with different dietary needs. The best way to get better is keeping yourself active, if it aches it is probably due to the operation which is a big one but also due to the fact of you are working muscles that haven't been worked for a good while. All the best and keep pushing. PS if he hasn't got one he may need a man cave. ;-))

Paul

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Thank you, lovely positive words!

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Hi it is perfectly normal for your husband to be feeling like this. I am 15 months post op and still have down days. All I can say is it does get better but it does take time. I set myself small goals like walking a bit further with the dog each day but your husband is expecting too much of himself too quickly. I was told that it would take a good year to start feeling more normal and it did. Now I am back to doing all the things I used to do including jogging and gardening and looking after my husband and 3 children. I know it is frustrating but hang on in there it will get better just stay positive and enjoy small achievements at first. We have been given a second chance and I intend to grab that with both hands. I send lots of love just remember things will get better it just takes a little bit of time x

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Thank you, love to you and yours too x

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I’d recommend seeing a Macmillan Counsellor. They offer the service to both patients and carers free of charge.

It might be worthwhile your partner speaking to someone of a similar age who is much further post op and doing well.

Give the OPA a call and see if they can find a member to talk to.,

For what it’s worth, I spent 2 years post op trying to get back to pre-op fitness and eating levels and it was not very productive. It’s only when I stopped pushing myself so hard that things began to settle down.

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We are arranging counselling, thank you for your kind words

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I had my IL op for years ago and you husbands situation is very familiar to me. I went through the same thing at about the same time. I had a series of six fortnightly counselling sessions provided free by Macmillan. The IL process is very demanding psychologically and emotionally but you don't have time and energy to process your feelings properly while you are going through it. The result is that it all gets bottled up and keeping it like that uses up a lot of energy and is very draining. In counselling you are encouraged to eXplore those feelings and deal with them. My counsellor used an analogy where I had been on a long journey and had returned with a suitcase full of dirty and crumpled clothes, during counselling these a taken out , one by one, and laundered. I'd recommend contacting Macmillan or a cancer support organisation. There are a number of support groups for oesophageal cancer sufferers. If you contact the OPA they could put you in touch with your nearest one.

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Thank you, counselling will, I am sure he very helpful, we are arranging it.

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5 months post op and this has been the hardest thing I have gone through in my life. I have had 3 children natural child birth, spinal meningitis and lots of other painful tough things in my life and this operation is by far the toughest. Hard from a physical pint of view and tougher from a mental point of view. Once independent and the one doing for others, I now find my self dependent and others doing for me. I have told myself that my ‘job’ at the moment is recovering. If that is rest then I rest, if it’s crying I cry if I feel like a walk I walk but I am taking it one day at a time. I have started to see a psychologist so I can share how I am feeling without impacting my family all the time. I have great family and friends supporting me but sometimes you need to talk to a neutral party. My suggestion is to compare how you feel now to how you felt two weeks after you left the Hosptial not to what you were like before the operation. I don’t expect I will ever feel that good again but I expect to be pretty darn close in time! Best of luck and look after each other. This is hard in the partners and family as well.

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Thank you for your lovely words and sharing how you feel, we are arranging counselling, I thought I was strong but seeing the man I love go through this has almost brought me to my knees. He tries so very hard and we both try to be positive but it is a long, slow journey that we are on, BUT AT LEAST WE ARE ON THE JOURNEY!

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Please tell him, it takes a very long time to recover. Four and a half months is such a short time. I am 5 years post op.

He has to understand that his body has been through one of the most devastating surgeries. He can't expect to use 2000 calories working, if he is only putting in 1000 calories. He needs to slow down and let his body heal.

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Thank you, he is trying, we both know you can’t run an engine on little fuel, but it’s frustrating to say the least. Your comments and those from others certainly help us both to get things into perspective (well, most of the time anyway)

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I guess my biggest tip would be to realise............

1. you are one of only 30% who can have the operation and you are still here.......

2. you are no different from anyone else who has had the op, we all get tired, and it takes weeks or months to be back firing on all cylinders, try a new hobby and try a short walk each day, try to make it just that bit further each day, take your time you will improve, at the Queen Alexandra hospital they told me that this op is by far the biggest they do there.

I'm now 10 months post op and am trying to exercise more, I go metal detecting once a week and cycling once or twice if it's fine. (only 8 or so miles but that's enough at the moment)

But most of all I'm still here ! ! at 74 I have my family and had I not had the op, well, it does not bare thinking about, be pleased to be alive, you will recover but you need time, we all do.

Jeff

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Thanks jeff, your comments and tips have just put things into perspective! I didn’t realise that only 30% have the surgery. Your positive comments really help.

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Great, he WILL get there.

Jeff

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Would be tough for you to do this, but find a way for your guy to be reminded: in statistical terms this is a terminator cancer; that he’s on the top side of the grass is cause for daily thanks. In physical terms, during the healing period (no substantial nourishment by mouth) his body consumed 2-3 stone of his lean muscle mass as its only source of protein. Pre-Ivor Lewis that muscle mass was his glycogen reservoir. Now, absent the reservoir, his body’s working on a “just-in-time” energy protocol. For many of us most days we make it work. But some days the short horizon sucks. Short horizon=short work=short energy span=short fuse. Plus: It’s a challenge to find attractive ways to ingest ~90 grams of protein/day and be faithful about workouts, try to restore some of that muscle. And smile and be cheerful. Helps to look at the grass now and again, appreciate how green—especially viewed from the topside.

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Lovely words, many thanks!

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Great response

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One other tip that has really worked well for me is 20mg of amytriptline every evening. It ensures I get a good nights sleep and also increases my appetite. It’s an anti-depressant, but at 20mg/night, it simply helps with sleep & reflux.

I also take sublingual B12 and a multivitamin spray.

It’s difficult to accept that it could take quite some time to recover, we’re talking years, not months. Counselling will help, but also speaking and meeting other OPA patients will be useful. Just make sure the person is also an active individual, so they can talk about the recovery journey. You can find your local meeting here.

opa.org.uk/patient-meetings...

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Thank you, we’ll ask about amytriptyline, have asked about b12 but apparently that’s not an issue as my husband still has his stomach. We are OPA members too, and are arranging some counselling.

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I was offered an operation, could prolong my life and give me another 3yrs. Similar to you and I went from feeling fit to wondering how I would cope. A short walk and I swung round the first lamppost and staggered home. Conscious of the overwhelming amount of support I was getting from folk who I had never heard of I decided to pin a smile on my face and keep going ( pride was not going to see me give up.) Aware of how ,much people wanted to help me, they were probably suffering more than me trying to find answers that would help me. I kept on going, one step forward two steps back, slowly more steps forward and less back but oh it seemed forever.

How can I describe my journey, totally unpredictable lots of potholes along the way, was it worth it oh yes, I've seen my children married, my grandchildren grow up.

My 3yrs has turned into 25yrs post op. but I still remember how difficult it all was at the start. Also very aware of the devastating worry that my entire family were having to cope with.

I'm 21 this year, old enough to be forgetful and not remember the x 4 that goes with it. Travel the road with hope and best wishes to you both sally

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Sally, your words are wonderful, I have just read them to my husband, he is trying so very hard to be positive and hearing your words (and those of others) is an inspiration to us both. I hope that as he progresses we can, like you, be of help to others starting their journey . Best wishes for the future xx

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I agree withall the above. I think I only started to make positive progress mentally when, with the help of counselling, I stopped trying to get back to pre op health and concentrated on progress post op. baby steps start to add up. a friend gave me a notebook and told me to note my progress in it. I did help. Also the saying "only look back to see how far you have come" is one to keep in mind. my opp was Sept 17 and I still can't acheive all I used to and have given up aiming to. Either I will get there or not.

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My husband is slowly realising that a very different pace of life is the answer for him at the moment, we are both going to have some counselling, which I am sure will help. It really is about getting your head round it all, and as you say the saying “only look back to see how far you have come” is a good mantra! Hope you continue with your recovery!

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Hi Luvver my husband had his ivor Lewis 9 years ago now. He still can't do certain things that he never used to think about doing. It's very hard in the early days. It completely changes your life. I do hope your husband gets the help he needs. My husband now looks at it as his life may be different now but the main thing is he's still alive. Good luck and remember one step at a time

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Hi,

I'm now almost 11 years post Ivor Lewis & now well into Retirement and a man too, so I understand perfectly how your husband if feeling at the moment. However, for all it's a long & sometimes hard slog to get back to some semblance of 'normality', it is far, far better than the alternative! We are all different in the way we recover & cope with symptoms and I still suffer with 'Dumping Syndrome' even now, and admit to being occasionally 'down' but on the other side of the coin I have been slowly renovating the house we moved to 4 years ago and believe it or not I have just completed a single storey brick kitchen extension and the only thing I didn't do myself was the Plastering! Admittedly it has taken me almost 10 months, but I had never managed to lay two bricks straight together properly before, and the Internet, Youtube & Google provided me with the knowhow & determination to give it a go. Also, I could not have got this far without the Patience, Love & Encouragement of my long suffering wife so I know what you are going through too! Stick with it girl, keep badgering your man to try harder to be positive & you will both get there sooner rather than later.

I wish you both all the very best for the future!

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Thank you for your positive words, I will get him to read them. He is trying so very hard. Like you, he was always very active, could turn his hand to almost any task so it comes very hard for him to adjust to the the new ‘him’ We are going on holiday soon and hopefully the change of scenery and some sunshine will do us both good.

Well done on the house renovations, you must be so proud of your achievement, and rightly so!

all the best for the future. X

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