Gullet (oesophagus) cancer

A group for anyone affected by gullet cancer (also known as oesophageal cancer) to get together, ask questions, share experiences and support each other.

Here we go again ! De ja vu

No. of entries: 9 | Posted on 24 May 2013 2:33 PM

Here we go again ! De ja vu

  • J had his 3 month scan on 7/5. Results given 10/5. Bad news. Disease has progressed in both esophagus and liver and now mets to lungs, sacrum and possible secondary tumour in the soft flesh in his arm. Bone scan organised for 28/5 and awaiting CT scan of both upper arms. Lump in right upper arm is size of half a tennis ball. Has had the lump for around 8 weeks now but didn't even say anything to me until he had had it for 6 weeks then told me it was a pulled muscle from an old sporting injury. Today is his 33rd birthday so very emotional. Chemo started again last Friday . Another 18 weeks :( then reducing to a lower maintenance level. Fingers crossed as our youngest starts school in September so will be another day to remember. Bless you all affected by this. X
  • Hi Im sorry to hear about the scan results but at least they are still doing something for your husband, I dont know if you noticed my post yesterday? they cannot do anything else for my husband, not sure why as he has similar. How is your husbands weight? what hospital do you go to?I do hope you both can enjoy his birthday best you can. It is so hard isnt it?But keep positive, we are still going to fight.Thinking of you all, and we are here if you need to talk. x

  • Hi ally, yes I saw your post and am sorry to hear that you have not been offered any options at the moment. My husband weighed 16st 4 this time last year and now 12st 10. We go to st james in leeds. Very pleased with how they are dealing with things but very difficult to get CT scans, seems to take weeks. He wanted to go out for lunch for his birthday , then tea , then a takeaway but now nothing. His mind and his body are at odds with each other. Other than pains in his arm he says he doesn't feel Ill would not have known tumours were growing again . He even asked me if they might have made a mistake on the scan, bless him. Bless you, thinking of you both. X
  • Hi Dawn, sorry to hear that the news wasn't better, but good that there is a treatment plan ongoing. I'm sure that it is so difficult for him (and you) to reconcile the fact that he is feeling quite well, but gets this news of progression. But feeling well is a positive to take from this situation, and will give him strength to continue with the chemo. Not much of a birthday present for him, but hopefully you'll settle on something that he feels he would like to do just to mark the occasion.  It is so hard, but I feel that your fighting spirit has kicked in already, so give it socks! Thinking of you both xx 

  • Some feelings of déjà vu can be good and some are pretty shit aren't they ? So sorry you are having to face this again it's so very hard. My thoughts are with you as you embark on this journey again. Lyn x
  • Hello DawnO

    I am sorry to read your latest news, it is so hard to keep taking the knock backs, thank goodness you have confidence in his onc team and treatment plan.which I hope will hold the beast at bay.

    Its really tough being back on chemo, but somewhat reassuring  there is a plan for maintenance beyond the 18 weeks chemo. 

    Sending warm hugs to you both.hang on in there x Mushty

  • Hi, so sorry to hear about your latest news. Don't know what else to say, really, my husband's affected by this cancer as well, 3rd ECX treatment last Fri - all okay so far, minimal side effects, but swallowing still a struggle. Keeps losing weight... Just wanted to wish you well, stay strong (I know it's soo difficult)! How are your children coping? How much do they know? Hugs x
  • Hi Tanni, thank you for the reply. J swallowing only improved after his stent was fitted so could have small portions of food but now has no appetite, I feel like the nagging wife trying to force feed him, cake, ice cream fortisips, anything. The older two children are from my first marriage so j is their stepdad, however, he has brought my daughter up since she was 3 so to her it is her dad. She has recently broken down at school so macmillan are now trying to sort out some counselling for her, she also asked if she could phone the mac line to talk to someone , she felt this helped her. She is due to start high school in September so really feel for her and don't want this hanging over her :( my son is nearly 17 and he just accepts that it is one of those things, he is a quiet lad who keeps himself to himself but I worry if I should be encouraging him to talk about it without ramming information down his neck. Our youngest two girls aged 5 and 3 just know that daddy is poorly, takes medicine and sometimes goes to hospital. They have accepted that he can no longer play tig or football or anything that needs energy, very sad for me to watch. It's a cruel cruel disease. I hope for a better day tomorrow, he has a bone scan in the morning so another dreaded week of waiting for results. Take care x
  • Hi Dawn

    I'm so sorry about your awful news. Only 33 - cancer seems so unfair at an early age especially when children are involved.

    My heart goes out to you