Tom Henderson

[TomHend]

In January, 2015, I was diagnosed with OC and as result underwent a course of chemotherapy. In May, 2015, I received a Ivor Lewis Oesophagusectomy(?). I am still trying to come to grips with the radical transformation of my body as a result of this operation.

[haward]

It is very early days Tom. I am now 30 months post op and it's only in the last 12 that I have begun to put on weight and muscle. My digestive system still misbehaves ; seemingly in a random fashion but I have learnt to live with that.

If you are struggling with food keep a food diary. There is a good example on the OPA website. I did this and it was very encouraging as it showed no link between particular foods and problems so I have persevered with eating and drinking and I now eat three meals per day and have few problems.

It does take time for your body to recover from this very heavy surgery. Most surgeons think 12-18 months. But you do recover. Come to an OPA meeting and see some of us. Where are you based?

[TomHend in reply to haward]

Thank you Haward for your words of encouragement. Waiting is the hard part and in these early days ver frustrating. Thank you also for the invitation to OPA meeting but I live in Australia. Commuting would b a drain. The medical team I am under are very happy with the way things are progressing. I think I will have learn quickly how to be patient. Once again thank you. Tom

[haward in reply to TomHend]

Australia! If it helps I managed to fly from kuala Lumpur to Adelaide for the third Test in 2013 and drove from Melbourne to Adelaide and then took the Ghan to Alice Spriings last year. It does get better.

[margie1 in reply to TomHend]

Tom m 3 years post op now and still getting used to my new plumbing lol I promise it does get better 😊

Where a outs in Austrdlia are you? I was over there last year visiting my brothers in Melbourne and Sydney. Take care

Marg x

[TomHend in reply to margie1]

G,day Marge, thank you very much for your words of encouragement. I have to learn to be patient(not easy) and from other contacts this is an important part of the recovery. I live in a town called Werribee, which is a suburb in Melbourne. Once again thank you for your advice.👍🏻

[RobinAylott in reply to TomHend]

Hi Tom, I'm in Oz too. I had my IL surgery in September 2013. Fortunately no chemo needed, but it still took me a good 9 months or so to feel nearly normal again. I still get a bit of pain from my tummy scar, and as Haward says there are still times when the system misbehaves! But things are great most of the time, and we've had a couple of O/S trips to the Balkans and Bhutan and taken the camper van Sydney to Perth and back since the op, so I can't complain! Stay positive, and every day will be a bit better than the last. You'll be able to look back in a few years time and be so happy that you had the op, 'cos the alternative doesn't bear thinking about!

Cheers, Robin.

[olive14 in reply to haward]

Howard do you know if there are any OPA meetings in Cornwall? My husband would be interested in meeting up with others who can share their experience. Many thanks.

[The_OPA Partner in reply to olive14]

The nearest OPA support group to you is in Exeter, please see our meetings page on our website opa.org.uk. I also know there is a Hospital led group at Derriford Hospital. If you need a chat please call the office on 0121 704 9860

[olive14 in reply to The_OPA]

Thank you for replying. I will pass this on to my husband.

[SteveJ]

Hi Tom

Have a look at the post's that have been put on here and you will see that what is happening to you is not unusual at all, and is something all of us who use this site have been through to a greater or lesser degree. Try to look at it as a journey on the way to your recovery.

Kind Regards

Steve

[Hidden]

Peter Harvey wrote a piece for the Cancer Counselling Trust, called 'Now the treatment has finished, then what?'

cancercounselling.org.uk/Pe...

I think it does take quite a time to come to terms with what you have been through, and your loved ones would feel much the same, but with different aspects. Macmillan did a survey that found that 25% of patients who had undergone successful cancer treatment benefitted from talking things through with a professional (such as you may find in a Maggie's Centre or equivalent), and that a proportion of those (10% overall) also needed some form of medication to help them over the mental process of recovery. So feeling as you do, and your family probably do, is very normal.

There is the added issue of your new, shorter, digestive system and how it behaves, or misbehaves. I do think that this aspect is quite complicated, and, as Haward says, inconsistent. Your pattern of eating will have become quite different from how it was before. People may see much less of you than they did before, in the sense that some people lose quite a lot of weight, and then remain at that lighter weight, and this affects one's self-image. But being smaller does not mean being unhealthy, and, provided that you keep up nutrition, mineral and vitamin levels, good progress is not related to putting weight back on putting on, despite the advice that you may receive and however much you might wish you still retained your old shape.

When this surgery is successful, it is quite often the case that people never felt actually ill beforehand, but the treatment and its after-effects certainly do make you feel old, ill and tired for a period of time. So one other aspect of it all is that it can make you feel that it was the treatment that has caused you all this trouble, and you wonder what it might have been like had you never found out about it. Your head tells you that you would have been struck down with cancer and it would have not had a positive outcome; but your heart sometimes wonders about it, especially in the middle of the night.

[patchworker in reply to Hidden]

Alan, as usual you're absolutely right. Especially about the midnight thoughts.

[AndrewB]

Hi Tom

It is such a shock after surgery and it will take a while to get over the physical and mental issues, however you should ask for counselling as this is normal. I know right now you probably can't imagine you will get better but you will. I lost nearly 4 stones but have regained weight an I am now 8 year post op!

Andrew

[TomHend in reply to AndrewB]

Hi Andrew, thank you for contacting me. The message that is coming through from the other people that have contacted me is that I have to be patient(very hard). You mentioned you lost a lot of weight. In my case, so far I have lost 40 kilograms(84lbs). The weight loss is slowing down which is good. I believe this is one time when being overweight has had its benefits. Thank you again for your support. Tom

[olive14]

Something one can never prepare for hey Tom. Its a massive shock to my husband how bad he feels. He wasn't great to begin with as his chemo did not agree with him. He ended with clot's on his lungs and had two heart attacks so chemo with abruptly stopped. Now to be going through all did horrid post op stuff as left him really weak and very down. You've had the same operation as Graham, lets hope things can start going good for you guys. Take care Helen.

[TomHend in reply to olive14]

G,day Helen, thank you for your contact. I believe initially the individual thinks they are the only one that this has happened to. However with contacts such as your self you soon learn that you are not alone. There is support there. All you have be is patient(very hard to do). My regards to your husband and for him to keep his chin up. Speak again. Getting ready for an extremely hot day here in Melbourne, Australia. Tom

[olive14 in reply to TomHend]

Thanks Tom, its just getting really cold here in Cornwall England, so a tad jealous of that warm sunshine. I think your right when you say it feels like your the only one going through all this. The other two guys that were in hospital same time as graham having the same operation appeared very text book, eating and drinking well, home after 6 days felt ok when leaving hospital, just the very opposite to my husbands experience. We met one of the same guys at our first follow up appointment he was doing really well. He is a 80 year old man and he was walking over a mile a day with his dog and eating very well. My husband is 52 and was in good shape up until his chemo can barely walk to the end of our pathway can't eat anything solid and is in and out of hospital having dilations everyones experience is so individual.

[sallym]

It is a massive learning curve to adapt to all the changes, and come to terms with a new life style. I was 58yrs when I set out on this journey, never then did I know that I would survive and finally reach the age of eighty. What a lot of anxiety I could have been saved!

One foot in front of the other and just keep going life is worth it.

Best of luck in your journey and one day you could also be looking back over the years. Take care Sally

[TomHend in reply to sallym]

Hello Sally, first of all I congratulate you on achieving such a milestone in your life. Secondly thank you for the words of encouragement. It means a lot when it comes from such a inspirational person such as yourself. Thank you. Tom

[sallym in reply to TomHend]

A sense of humour does help at times when things don't quite go to plan. A recent removal of a polyp, slight complication and a four day stay in hospital, shortage of beds and at the age of eighty I found myself on the maternity unit. My fellow patients thought I had got lost but I had a wonderful stay.

A lot of encouragement from other patients is almost like having a second family along the way. Take care sally

[olive14 in reply to sallym]

Wow this is wonderful to hear. Bless you for staying in touch after all those years and giving such hope to all new sufferers since. X

[toots1951]

Hi Tom,

The weather sounds glorious over there - rather miserable and cold here ! my husband had his Ivor Lewis May 2014 at the age of 66 - no health problems or issues up to then. Just discomfort on eating just twice and then confirmation it was EC. He had chemotheraphy but like Olive's husband Graham it made him extremely ill with blood poisoning so when he had his operation he was more than relieved to have reached that stage.

I armed myself with as much information as possible about the recovery stages and this prepared me as much as possible on what to expect. I think as you say it is the way it changes you physically and mentally but when you think of what you have gone through during the operation it is only to be expected.

Take it a day at a time - doing a little more each day and if there is a day when you can't then don't worry. It is a lengthy process but you will get there in the end.

Something my husband said the other day when he was feeling a little low (which does happen every now and then even now) 'I have been given this opportunity and I need to grab it with both hands'.

You will get there.

Sue

[MikeK]

Hi Tom as everyone will tell you it will take a while for things to improve and the important thing is not to worry and don't try to do much during the initial 12 months post surgery. I had my operation in February 2013 so now 2 years 9 months on I feel pretty good most of the time. Although I live in the Isle of Man I had my surgery in Newcastle, England and was operated on by one of best Upper GI surgeons not only in the UK but worldwide. He always used to tell me that this operation is major trauma surgery and for example heart surgery was a walk in the park compared to this. The body will take its time to heal and to adjust to the various changes so just be patient and things will improve. Although I am now 65 I can still do most things and whilst I don't really enjoy going out to restaurants any more it is a small price to pay! I did keep an informal diary for the first 6 months or so and I would happy to send you over a copy if you would like to read it. Just send me your e mail address.

Mike