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Newly diagnosed with oesophageal cancer and the Fear

Boxbrain0
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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. 

  • Offline in reply to Rhubarbdragon

    Thanks so much. Yes, a relief. Hope alls good with you & hubby

  • Offline in reply to Boxbrain0

    haha. Thanks Marc. How's your recovery going?

    I've been trying to get him moving for a while, he's also waiting for a knee replacement as he tore it to shreds a few years ago. He gets sciatic pain in his hip in the opposite leg due to compensating for the bad knee!

    He's definitely eating the calories though and doing as much moving about as he can. Did you have one of those incentive spirometers before your op to strengthen lungs?  They gave Dean one yesterday. 

    Also, I have accidentally come across you in a group on FB - not stalking you honestly.

  • Offline in reply to Karren

    I had a bottle which I blew into and made bubbles that helped to strengthen my lungs. I am sleeping reasonably well now but still get tired quickly. A lot of the pain is gone in my chest and back now. Eating is a problem as I get tummy ache every time afterwards and therefore don’t enjoy it. Also my vocal cords must have been damaged as my voice is really high and croaky. I am seeing the oncologist tomorrow and she will no doubt tell me that I am starting chemo again In two weeks and *** me up completely for a few weeks. Still I’m still here and that’s something. 

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    I was diagnosed 31/2 years ago with oesophagus and lymph node cancer had 6 treatments of chemo and 2yrs immunotherapy and the cancer in the oesophagus is all but gone I still have it in my lymph nod in my neck and waiting to start immunotherapy again soon as I had a bad skin reaction. be strong..

  • Offline in reply to Boxbrain0

    Thanks for reply Marc. Sounds good except for tummy aches and voice issue. Did you raise the voice issue with oncologist? Hoping its a temporary thing. Incidentally about 10 months before Deans diagnosis, my husband had thyroid cancer and the op caused changes in his voice and definitely his eating habits. he loved a point of beer...or 6! but now has no taste for it hardly, same with indian curries, he used to have vindaloo but can barely tolerate a bhuna these days.    

  • Offline in reply to Stpatricks

    Hi there. Thanks for sharing & I hope you are good. How many lymph nodes were involved? Did they not do surgery then?

  • Offline in reply to Karren

    Hi Karen. Just wondering how Dean is getting along now. I’m half way through my second lot of chemo sessions and not too bad this time so far. Eating is still not great as I need to have my throat dilated a bit to make it slightly easier to swallow. I don’t really enjoy food any more but the weight loss has made me so much more mobile and I can’t walk for miles with no problem anymore. I haven’t taken pain killers for weeks now so that’s good . I can also sleep fine on my side with just two plllows so that’s good is great. I have had to buy quite a few new clothes as I am three stone and a bit lighter now. I also hope that you are doing well as I have seen how difficult it has been for my wife with all that is going on and I know it effects our family so much.regards Marc

  • Offline in reply to Boxbrain0

    Hi Marc, good to hear from you. So they made your join a bit tight, or maybe it healed a bit tight? I have heard of many who have had ivor lewis having to have dilation. So weight wise are you happy you lost weight or is it a bit too much loss? Great you're not needing the pain killers. Appetite can go at first I heard but can gradually come back. Are you saying you can or can't walk miles anymore? Sounds like you're not doing bad as you are only a few weeks ahead of Dean.

    So Dean had the op on Friday 1st August, 7 hrs so not too bad. left him alone on the Saturday but he wanted us there on the Sunday - he could barely talk as he was so breathless - I was bloody worried! I raised it with a medic (obviously Dean was telling them as well) and they said they weren't concerned. I raised it a couple more times over the next 6 days and then on day 7 when myself & his wife were there he took a turn for the worse and it was action stations - very scary. Emergency scan, back into ICU on oxygen & IV antibiotics, as he had been moved to the normal ward 2 days previously. 

    They thought it was a tear in the join (long story) they took him back into surgery next day - general anaesthetic for endoscopy procedure where they fitted a little sponge gadget on the join, even though they could not find any tear, they put it there just in case it was too small to see. Then, after anaesthetic they couldn't wake him up and his breathing and SATS were all 'off'. They called us to say they were putting him on a ventilator so we were beside ourselves with worry. They said to call back in 2 hours to find out what's happening! The mad thing is that about 1 hr into the 2hr wait, Dean messaged me like nothing happened :) He knew nothing about his possible brush with being ventilated - no one had mentioned it to him. 

    It turned out there was no tear, it was pneumonia and a collapsed lung. Within 4 days of all that he felt really good. He came out 8 days ago and is eating alright, says he's not sure if he feels hungry or not but is eating what he can as he's lost about 4 stone since diagnosis. Luckily he could afford to lose it.

    He has appointment 2nd September to find out pathology.....why do they keep you waiting to find this out I wonder.

    Yes it's hard for those that love you but we would swap places so you didn't have to go through it. 

    Regards Karen

  • Offline in reply to Mouser

    Hi, just hoping you are still doing well.x

  • Offline in reply to Karren

    Hello all, I have spent the last hour reading this entire thread. It has helped me a great deal.

    my 49 year old wife has been struggling with swallowing for the past four months and had an endoscopy on Thursday.

    The doctor found a mass just before the stomach. It was big and he struggled to get the camera past it. We have been told it’s likely to be 90% chance of cancer. Her CT scan is tomorrow and we wait the biopsy results.

    I have been a complete mess for days with full breakdowns while trying to be normal when my 14 year old daughter is around. 

    My fear is that she perhaps only has months to live, as I read that once swallowing difficulty presents, it normally means the cancer is well established. We were told that if it has spread to the Aorta area then operation is not possible. 
    it’s been the worst weekend of my entire life. 

    My wife, bless her has been very calm about it. She says she has had no other symptoms and her bloods and poo samples were all fine. 

    she is now on a liquid diet and she is keeping it down which I am so happy about. She has gone from 60kg to 50kg in six months. She had never smoked or drunk more than a glass of wine now and then.

    Having read through all of your journeys, I’m feeling a little more confident that I’m not about to lose the love of my life. 

    So THANK YOU all again for giving me hope. It seems that this cancer can be battled with.

    Alex.

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