Hi , I’m new to this site but wanted to share my experience of living with oesophageal cancer. I realise that I’m one of the lucky ones in that my cancer was caught relatively early and was therefore operable.
I was diagnosed with cancer of the oesophagus in February 2007 and after many tests and two sessions of chemotherapy I underwent an Ivor Lewis operation, which is major surgery to remove the cancer, and lasted around seven hours. I responded well throughout and remained only five days in intensive care before being moved to a general ward and released a week later.
Since then, I’ve continued to do well but suffer from dumping syndrome as a result of the surgery. This is an unpleasant side-effect that causes fatigue, sweating and nausea after eating. Also, I now have to have vitamin B12 injections every three months as my body can no longer process this essential vitamin.
All in all, I feel ok and have remained positive all the way through. I realise I’m extremely lucky and count my blessings every day.
I’ve read so many negative reports about this type of cancer so I felt I had to share something positive for those of you who have, or know someone with, Oesophageal cancer.
All the best
Crystal
had trouble navigating the site and finding this group again, but i am back with a vengance. Yes Crystal have read several books on food synergies, biochemically there is a lot of merit generally. I downloaded a kindle ebook ' the complete book of food combining' by Kathryn Marsden which i found interesting and was really impressed with the book 'food synrgy' by elaine magee
by the way Crystal, i like your new profile picture
At last I have found this thread. I think I'm getting more familiar with the new site. I hope you are all well as you can be.
Kenny has had another stent put in to help with swallowing difficulties. He is having terrible burping episodes since then. Does anyone have any advice to help with this.
Sheena xxxx
Hi Crystal
I too love the the photo. This thread has so much in the way of support for people with OC so I hope to see you back posting soon. I know you have a lot going on at home at the moment but this place gets very quiet without you here.
Take care,
Steve
Hello Steve, it's great to see you! I hope that Crystal will be back soon, her advice on here has been wonderful.
I showed my Dad Crystal's fabulous photo - as a way of saying "SEE, this is how you will look after your treatment!". Well...you know what I mean! Can't imagine Dad with blonde hair and looking all glam, but you never know!
I've also discovered the OPA - I spoke to the most positive, helpful lady and it's really lifted me. We are going along to a local meeting in November to meet some survivors. I think it will do Dad (and us) the world of good.
It's good to see this forum up and running again, lots of love to everyone.
xxxx Sarah xxxxx
Hi Sarah
The OPA is often mentioned within the threads, but not everyone always picks up how well informed they are until they actually get around to giving them a call. Griff is doing a charity CD to raise money for them. You should get a regular news letter from them now you have made contact.
I went to see my consultant the other day and am waiting for a CAT scan. Life is treating me well at the moment, I normally turn the scans down but my consultant made a good case to have one. It is over three and a half years since the op so it will be good to know one way or the other.
Take Care
Steve
Hi Sarah
You may be interested in the Mac film they did of me back in December. In that film you can see what a porker I was getting because of my love affiar with food. The thing is I have never looked better weight wise since the op, some people have to pay good money for that sort of result!
http://www.youtube.com/watch?v=u311Txlv79s&list=PL5E21C608F7C6CC94&index=2
Steve
Hi Steve,
I've just watched your filum.....Steve the film star!
You are right - you do look different. BUT you look great!!! You also look a lot younger than your ever-so-slightly stern profile picture.....it looks as though your weight may be under control, which is great.
I know how much everyone on here has fought to get where you are now. It's an incredibly hard journey but it really helps Dad to know that he's not alone. I don't think that you, Crystal and everyone realise how much help you all provide.
I'm so impressed with the OPA and I've only spoken to them once, I'll have a look at Griff's CD as I think it's a wonderful cause.
I wish you all the best with the scan Steve and I'm sending you lots of love.
xxx Sarah xxxx
Sarah I can relate to your fathers feeling about the doctors trying to get rid of you with chemo, the pre surgery chemo was OK, I struggled with the post surgery chemo. I just remained positive and focussed on the outcome, sometimes as the old saying "you have to cruel to be kind" rings true. In the final analysis the demon that possesses us can be a lot worse if left unchecked. I also can relate to Steves video, well done mate.
It is a great help knowing that you are not alone in your struggle against the demon, and this site has been a great help and there is nothing more pleasing than the oncologist saying "your scans are all clear"
Regards Lou
Hi Everyone
As Steve says, I have a lot going on at home right now, but hasten to add it's all good, as we are moving house. I'm really excited about this move as it has been something we've been trying to do since a year before my illness in 2006, which then of course precluded us from moving for a few years. Now, with everything the move entails I've been incredibly busy with only limited amounts of energy but loads of enthusiasm. Reading all your kind words whilst having your own problems made me realise that I shouldn't neglect my friends here for much longer.
Lou, I'm so glad that you think the food synergy has some merit and I think it's worth keeping an eye on, or even putting it into practice. The food combining I think maybe is a different concept whereby protein and starches are kept separate and are not eaten together. It originates from the Hay diet and having tried it way back in the early 90s, I can vouch that it's a great and easy way to lose weight without going hungry. xx
Sheena, I'm glad you found this thread again and I hope that Kenny is doing really well with the stent and is able to build himself up on a more substantial diet. The involuntary burping is nearly always a problem caused by trapped wind escaping and I suffer from it horribly so very rarely eat out anymore. Some people say bicarbonate works well, whilst others have various meds from their GP. I find that eating slowly and eating far less than I want to, helps a little, but it is an embarrassing problem. I can laugh it off at home with friends, but am mortified when it happens outside. It once happened on a bus and I fell about giggling and couldn't stop, which made it all very much worse and gave the impression that I must have been drunk. If you're reading this Sarah, that is definitely not a glamourous look lol.
Anyway Sheena, is Kenny to have any follow up treatment or is he being monitored with the new stent? I hope it all goes well. Xx
Sarah, you really made me laugh by saying your dad could look like me lol. It is a major operation, so you never know, heeeeheeee. The main thing for your dad right now is to keep his spirits up and focus on what he can do to help himself both physically and mentally. A little exercise goes a long way in helping to raise spirits, alleviating chemo sickness and preparing the mind and body for surgery. You seem to have a great and positive attitude, a can do approach, which I'm certain is a great help to both your parents. I'm glad you finally called the OPA, they are a fantastic support. xx
Steve, as you know, I've been a touch busy, but this weekend I shall do my catch up emails, and that will also include ordering a couple of copies of your newly published book as shown on Amazon uk. I love the title 'Reaching For Rainbows - a practical guide to living alongside cancer', and cant wait to read it. I also like the idea that you've incorporated your writings from 'The Demon' to emphise certain aspects and lend a spiritual viewpoint occassionally. I see your book already has a customer review full of praise for the content. Well done Steve and many congratulations on what must have been a very challenging project, but one that will be of so much benefit to others.
Good luck with the book and I'm sure that anyone newly diagnosed will find hope and encouragement within it's pages. xx
To everyone looking in, big hugs.
Love
Crystal xx
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