Newly diagnosed with oesophageal cancer and the Fear

Hi I was diagnosed with oesophageal cancer last month and I have had a laparoscopy and having an endoscopic ultrasound tomorrow. I wondered if anyone has any ideas how I can help the absolute overwhelming fear that I am experiencing. I am having really bad dreams and hardly sleeping. The smallest mention of cancer on TV sends me into a panic and I am so worried about upsetting my wife and 20 year old son. It seems to never leave my thoughts. 

Parents
  • Hi. The fear is understandable of course. Have you had any treatment yet? My son was diagnosed oesophageal cancer yesterday so we are all still in shock. Hes 42. None of us can think of anything else. I don't know how to just carry on and do normal things. Are you trying to go on as normal?

  • Hi Karren, Very sorry to hear about your Son. It’s all a bit much to deal with however even after just a month the fact that it’s real and the why me feeling gets more bearable. I know it’s difficult but please get him to try to NOT keep looking it up on the internet as this really is frightening and you nearly always get the worst case scenario on there. I had an endoscopic ultrasound this morning and it was fine. I had a laparoscopy 3 weeks ago and this was abit more uncomfortable and sore for a few days but another thing to tick off the list. Take each day at a time. I am a teacher with young adults with learning difficulties and autism so it was difficult to keep working as they are in your face a bit. It’s early days and I am doing as much as possible at the moment whilst I can before Chemotherapy. So yes as normal as possible. Take the scans and tests they will do one by one and make sure he talks to you and his loved ones about it. Please contact me anytime or get him to as it would be good to have someone else who understands the challenges. 
    All the very best

  •  Feel sometimes that i am having to keep contacting them for answers.I

  • Hi everyone I went to a local oesophageal cancer support group yesterday in the morning and my wife and I were really sceptical about it. However it was really fantastic as I met people who had had the op 10-20 years ago and were doing really well. I was so relieved that there really is light at the end of the tunnel. Most I met had had the op before the keyhole robotic surgery we can have was around and were opened up from front to back. It has made a lot of our fears a lot less daunting. I strongly recommend going to one if available. Also the main thing that they all said was avoid the internet at all costs when it comes to reading about it as it is often way out of date and always the worst case scenario. 

  • Also met a guy who had the surgery 9 months ago and he showed me the scars. It didn’t look that bad thank goodness

  • Wow thats so encouraging! - thanks for sharing. I'm going to screenshot it and send it to my son. I've suggested he join the forum but he isn't up for it at the moment. He's cocooned in his bubble with me, his wife & kids.

  • That is exactly how we were. We say it’s not for me but actually that’s exactly who the groups ARE  for. Information from people actually having had the treatment not just professionals who do the op

  • Is it the local Macmillan service that runs the support groups.

  • Mine was set up by the Upper GI nursing team but there are groups all over the country and macmillan gave me some info on some others near me. 

  • I will contact my local Macmillan tomorrow and also speak to my upper GI nurses to find out as I think a support group would help my anxiety 

  • Honestly it really helped so very much as it was good to hear from actual human beings about how they had recovered and are leading relatively normal lives now. One of the chaps there gave me his number and said to call him or meet up anytime. It was incredible but he was out jogging 6 weeks after his operation. Friends often just don’t know what to say and often say the phrases like you need to be positive but but it may be true but when it’s all so new and always on your mind that can be a bit difficult. Hang in there !

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  • Honestly it really helped so very much as it was good to hear from actual human beings about how they had recovered and are leading relatively normal lives now. One of the chaps there gave me his number and said to call him or meet up anytime. It was incredible but he was out jogging 6 weeks after his operation. Friends often just don’t know what to say and often say the phrases like you need to be positive but but it may be true but when it’s all so new and always on your mind that can be a bit difficult. Hang in there !

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