As the saying goes "doesn't time fly" I don't think I will ever forget just how weak and down I felt when I was first discharged. Then I found HealthUnlocked, What a superb forum, all the help and support you need in one place. I soon realised how I felt was the norm for people recovering from the Ivor Lewis op. There's no getting away from the fact it is a life changing operation ( also life saving thank god) especially where food is concerned, I soon learned what suited me and what to avoid.
Three years ago today I was recovering in Intensive care, tonight I have been out with the family for a lovely meal, I'm enjoying life to the full again, holidays, cycling, walking and working full time again, doing a job i really enjoy.
I realise I have a lot of very special and highly talented people to thank for what was basically saving my life, but I will always be grateful for HealthUnlocked and its members for not only sharing their own experiences, but the reassurance and support that is readily available can only be described as invaluable.
Hi grandad4, I totally agree with every word you say, I am 4 years post op Ivor Lewis op and I can't thank the medical team (Queens Hospital Romford Essex) and the healthUnlock group enough, yes life has change but I have life !!!! Once again thank you all. Tina
Hi Grandad4 , l totally agree with everything you say, and l too feel privileged to be here and having a good quality of life. Yesterday at my yoga group l was called 'our village miracle '. I have Mr Raimes and his team from The Cumberland Infirmary to thank, and of course all you guys on here for always being there
Absolutely agree. I had a wonderful team, and still have at The Royal Surrey County hospital in Guildford. And a wonderful husband who nursed me back to health. Here I am writing this from a cruise in Norway. How lucky are we! Thank you to all those who post on this site, it's such a great comfort and support as we don't feel a alone. 😄
Well done! I think that this is a great site too. I am coming up for three years since my op and I am well and enjoying life to the full. It's great to be able to encourage those who are coming up for the op or in the nasty early post op stages. Haward
I agree. I am coming up 3 and a half years post op and am really grateful to the team at Coventry University Hospital. There are times,like when I am out for a meal with friends,I can start to feel sorry for myself because I wish I could eat like they do,but I soon rein myself in and think of the alternative. We are the lucky ones. Best wishes, James.
I was 3 years post op on 19th February and fully agree with all your comments. I had my operation at the Newcastle RVI and my grateful thanks go to Professor Mike Griffin and all his fantastic team.
Thank you for all these appreciative comments. This is a bit of history, but we heard about HealthUnlocked in the early days of April 2011 after they did a presentation at Cancer52. At the time we had a bulletin board called Food Tube Forum (now defunct) on which we posted quite a number of topics, but it never really took off in terms of participation from patients. So three of us from the OPA went to see the HealthUnlocked team to see what was involved to get it going - and now, in the nearly five years since then, we have come up to about 400 active members and around 50 new members each month. It is, of course, the members and contributors that make it what it is. It is not such a big membership as some of the other communities on HealthUnlocked, but it does fill that gap for people who cannot, or would prefer not to, come to a patient support meeting. That is what we intended and we are glad that you have all been of so much help and support to each other.
After a while we started OPA Charlie's Circle, named after a contributor, to enable those in palliative care to talk to each other in a separate forum, but this is nowhere near as busy, and with many fewer members.
It can be very helpful to communicate with others having the same problem. I went to a meeting of the Achalasia group last night. One couple came from Cardiff to London for the meeting, and we have had somebody from Sheffield a few months ago. We never know what to expect, going to a meeting like this for the first time, do we? But everyone valued the experience at the end of the meeting. Incidentally one person was there who had had an oesophagectomy just over a week ago and was looking really well. Which underlines the old saying that complications are not compulsory, and that there are many people who have such operations, get on very well, and we never really hear from them. It really is a tribute to the surgeons and the others in their teams, and we all have so many reasons to thank them.
I'm so thrilled for you all as a I know this is a very difficult surgery my father went through it years ago and had many good years after. My husband now has been diagnosed with adenocaranoma esopagus cancer Oct 1st 2015 because of mets to the abdomen it makes him stage 4. He is doing well now after 5 chemo sessions and not sure how many more he will need to have possible 9 months the Oncoligist said but last CT scan shrinkage in both tumour and nodes to abdomen. I hope and pray he can one day be lucky like all of you and be able to have the operation to be completely rid of the cancer beast.
Good luck to all you you in you journey and enjoy everyday 😊
Endorse all the other comments, my three year anniversary will be in June, and I'm so grateful for the care I received from Prof Wyn Lewis and his team at University Hospital of Wales in Cardiff. Life is not quite the same...but life is good and I count my blessings every day. X
Looking back over the years I realised the desperate need to find somebody else who understood what I was talking about.
Finding a support group in London with other patients organised by David Kirby was a tremendous relief and help.
I remember the start of going online, the amount of work undertaken by Alan and Larry Rees among others to make this work and continue to monitor it is something for all of us to be grateful for.
Possibly the most important thing post operatively is to know that somewhere there is a lifeline to hang onto when things get tough.
Yesterday I went with my husband (81 in May) to Southampton General for the 4th anniversary of his op. We too are so grateful for the good years we've enjoyed, thanks to the wonderful staff there. After the next scheduled visit in a year, if all is still well, he will be discharged
We saw only the specialist nurse this time, because the surgeons were covering for the junior doctors on strike. She said that the incidence of oesophageal cancer is rising all the time, and that Britain is a hot spot for this type of cancer. But no-one knows why.
I have been doing my best to distribute leaflets etc. to local pharmacies to raise awareness of the warning signs, particularly the need to take antacids continuously, something my husband did for years before his diagnosis.
Best wishes and thanks to all on this site for the support and help.
Like all of the above, I have also found great help and sometimes, comfort from this site and all it's wonderful contributors.
A big shout out here to the wonderful James Gossage and his team (Andrew Davies) at St Thomas in London. Eighteen months after my Transhiatal Esophagectomy, James still answers every email, stupid question and call for help. He never gives up and just radiates confidence. I liked him as soon as I met him. He saved my life and I am now able to enjoy life again.
I still marvel at the dedication of all the medical staff who looked after me all through my illness. They never knew me, but they gave everything for me. Wonderful people.
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nausea and sugar dips
Bad dumping incident?
