Surviving Oesophageal Cancer

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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

  • Hi Ben, Mick and Everyone
    Just to let you know that I had an email from Netty’s husband John, saying that Netty is doing very well. As you know, she had the surgery on 25 March and John tells me she was sitting up the next day joking with the nurse.
    Fantastic news Netty, I hope your recovery continues to go well and that they’ll let you go home soon.
    To All, hope your day is as good as it possibly can be.
    Love Crystal xx
  • FormerMember
    FormerMember
    Hi Crystal ,sorry lovely lady to have not replyed to your last months post ,but i hope this post finds you well .I have finished my 5fu and have got surgery for the 20th april,so it will be all go from now until then trying to get the odd jobs done.Hello to the kiwis-i lived and worked in Miarangi Bay and miss the life style .your thread and kindness is an inspiration peace and Love Woody xx
  • Hi Woody
    Thanks for your kind words and welcome back, I wondered how you were doing. How are you feeling now after the chemo and are you feeling ok about the surgery? You must just take it easy, try to build up your strength ready for surgery and do a little exercise if possible. Above all, it’s important for you to stay away from crowds or people with colds and viruses, because your immune system will be very weak at the moment, and any virus could make you quite ill and delay surgery. I hope you’re feeling good today. Keep in touch and if you need to know anything just ask.
    Peace and Love Crystal xx

    Hi Ben, how are you doing? I’m sure you’re getting fitter with the physio and all those lovely walks you go on around your neck of the woods. Take care.
    Love Crystal xx
  • FormerMember
    FormerMember
    Gidday Woody from the land of the long white cloud. But not a cloud in the sky today - a lovely 21degree cloudless day in paradise -probably similar to what you are having in your neck of the woods.Pleased to hear you have spent time down under even if it was in the Jaffa city of Auckland. Sorry we had to meet here but you are in great company - just wish I had found this site/group earlier.
    Crystal's advice to keep away from any "nasties' is a good one and to eat all your favourite dishes and keep in top shape over the next 2 weeks.
    Know what you mean about getting all the odd jobs done! just to let you know I spent 3 hours outside cutting hedges (with help from an 16yr old (strapping rugby playing) grandson and feel great! Had my plumbing rearrangement on 1st Dec 2008 4months ago so she's all go from here on.
    Will be thinking of you on 20th. All the very kiwi best.

    Hi Crystal,
    Yep the physio is working well tried the pool on monday and will be trying circuits in the gym next week after the pool. Has freed up around the scar tissue and I am moving easier.Maybe imagination but my appetite also seems to have improved! Anyway it's all good thanks .
    Chers Ben
  • FormerMember
    FormerMember

    Hi all

    Nick is doing well but energy levels come and go. Have been rather busy at school and we still have ofsted to look forward to. How are you doing Crystal? and Brumigen? We have a new addition to the family ... a labrador called snow! I must be mad but he is getting us both out and walking on the beach ... well I am the one who takes him running on the park at 6.30am and Nick takes him round the block lunchtime then we both take him to the beach 5pm for a run and play ball. Nick's weight has stabalised and I have lost 4kg. We have spent the weekend gardening as Nick was feeling really well. However he is tired tonight ... so is the dog!

    Hi Ben

    Would be great to meet up but Nick and I will not be in NZ this year due to his ops. Both my daughters are coming out in July with the eldest daughter's boyfriend and their aunty Fiona. I will miss my fix of paradise this year and Nick says he is looking forward to eating at Saffron in Arrowtown, will have to make it next year. The girls will be in Queenie to do a bit of snowboarding and relaxing in Aspects of beauty, they will be visiting their uncle steven who lives in Auckland, and friends who live in Kirwee. Small world but Fiona's husband (Geoff) has a good buddy from uni who is a doctor in Timaru. Kepp smiling :)

    Jane & Nick

  • FormerMember
    FormerMember

    Hi Jane and Nick,

    Great to hear you are doing so well. Nothing like a dog called Snow to get you going!! I brought my heading dog Trixi from the farm at Lawrence when we moved and she has that "dogability" to give me that look that says -if you want to sit there that''s ok but you would be much better off taking me out for a walk. I'm sure Snow is the same. Take care out there.
    Cheers Ben

  • FormerMember
    FormerMember

    Hi Crystal,

    Hope this share-let finds you fine and with a spring in your step as i see you have not posted for a while and was wondering if everything ok?.I had decided to go to the coast for a while ,so i was not in internet land for a while ,I have tried to stay away from people with the nasties but its not easy to tell who has and who has’nt got them.The sun blessed us for a few days and the rain blessed us for the rest of the time.

    Have you been able to increase the range of menu options yet? ,do certain foods have a worse effect than otherstuff?,Going in on Monday to see the plumber so I find out myself ,I would like to discuss the food thing in more depth later but knowing how long it takes me to post ,it may be a lengthy correspondence. P& L Woody xx



    Hi Ben

    Thanks for the kind words from yourself, your Kiwi location sounds excellent for recoup-can I book in for for R&R? its a bit more frantic around these parts,lots of people and lots of noise …hope all is well…Woody

  • Hi Woody
    It’s good to hear from you, as I know your surgery is on Monday and I was hoping you’d drop by before you go into hospital, on the Sunday I presume. If you want to send me a pm before you go then feel free to do so. Your own profile doesn’t allow anyone to send you a message so it’s good that you’ve posted here. I hope you’re feeling very well and although I know you’re probably a tad anxious, don’t forget that you’ll be in the very best and most experienced hands. Before too long you’ll be posting here asking those diet-related questions. Is there someone that could post and let us know how you’re getting on until you’re fit enough to post for yourself?
    If we don’t hear from you before, I wish you good luck and a good and speedy recovery. ((((Hugs to you Woody ))))
    Peace and Love
    Crystal xx

    Hi Jane and Nick
    It sounds as though you are so busy Jane, but Nick is doing tremendously well isn’t he? It’s only been 3 months and already he’s gardening and running on the beach, no wonder his energy flags sometimes Lol. Though I do sympathise with the energy drain as I can still relate to that occasionally. How brilliant to have a lovely Labrador called Snow, who will make sure that you keep as fit and healthy as he wants! (Who’s a beautiful, wootiful doggie woggie boy then) Sorry, couldn’t help that, I just love dogs and all animals. Take care and keep in touch, especially about Snow Lol.

    Hi Ben
    I hope you’re still going great guns and out making hay with your dog Trixi. As Woody, Jane and Nick all say, you have the very best place in which to enjoy the walks in that superb scenery. Hope the physio continues to go well and that your diet has settled down more.

    Hi Mick ((((Hugs to you too))))

    As for myself, I’m fine, but after reading your stories of your dogs keeping you fit, well when I was in early recovery I could only manage a kitten called Elfie. He’s absolutely adorable, but I don’t quite get the outdoor exercise that you’re getting. Most of it is indoor activity called catch the vase or climb the curtains or shred the wallpaper Lol.
    Take good care everyone.
    Love Crystal xx

  • FormerMember
    FormerMember
    Hello Everyone

    I am finally at home - escaped last Thursday. I have an infection in the chest wound, but I mamnaged to convince the doctors to let me go anyway. The district nurse comes in to do the dressings.

    I'm pleased that John kept you updated while I was in there. He printed off your replies and brought them in for me to read. I was amused (and comforted) by the stories about batty behaviour in ITU. Relieved to know it wasn't just me! It seemed so real at the time. I agree with you Mick; imagine people paying good money for that kind of experience!

    I still cant believe that the op is over. I have to say I was much braver than I thought I'd be, when it came down to it. I did get pneumonia, but it cleared up very quickly, and I have to say I had excellent care and lots of encouragement.

    I have to say that the first few days home have been a bit hit and miss. I was a bit of a star in hospital;everyone was very pleased with me for doing so well, so quicky. I think I just presumed that I would progress just as quickly once I got home. I'm finding out that that isn't the case at all. I have to learn to accept that its a long haul, and its early days yet. I think the main problem was that I got so wound up about the surgery itself, that I couldn't see past it to listen to what people say about how exhausting I would find things and what a challenge eating would be!
    But I'm staying positive - I can celebrate the fact that I took on Mr Ivor Lewis and he didn't beat me - he knocked me about a bit, but he didn't beat me. Not so far anyway.

    My thanks to you all for the good wishes you sent, and for your support, which I appreciate much more than you know.

    Woody
    I haven't spoken to you before, but I just wanted to say that I so know what you are going through in the lead-up to the 20th. My thoughts are with you. Just keep thinking that you and me are going to be the newest passengers on Mick's Survivor's Bus

    Love to you All

    Netty xxxx
  • ((((Netty)))) Welcome home, and you’re a star for posting here so soon after your surgery. I don’t know how you manage it because I wasn’t fit enough to approach my computer for many weeks, just through tiredness really. You’re doing really well. I didn’t know you’d had pneumonia so that must have been very worrying at the time. But these doctors and nurses in intensive care are amazing aren’t they?

    I’m glad that you were able to laugh at our posts and John was an absolute star in keeping us informed of your progress, so a big thanks to John. We shall want to hear all about your hallucinations when you feel up to it. Bizarre aren’t they LOL, and yes, very real at the time.

    I imagine right now you’re feeling kind of knocked out and wondering however you’ll cope, and even do the simplest thing without sheer exhaustion taking over. You’ll see that day by day you will accomplish the small things and there will be a compilation of achievements. The main thing is to ride with it, your body has control for now, and it does get better, it really does.

    Hi to Woody, good luck and thinking about you.

    Hi to Ben, have a good evening Ben, how’s the exercise and eating?

    Hi to Jane and Nick, hugs to Snow, go on then, and you Lol.

    Hi to(((Mick)))

    And anyone looking in, hope your day is a sunny one.

    Love Crystal xx