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.

So Torn............

No. of entries: 7 | Posted on 26 Sep 2011 1:25 PM

So Torn............

  • Need some advice............................ In the last 24 hours the Hospice seems to of got my husbands pain under control and bless him he's hoping to come home maybe tomorrow,of course i want him too but am extremely anxious.This dreadful disease has understandably changed his personality i have never underestimated how awful it must be for him.Yes i deal with his anger anxiety because i love him to bits and want to do all i can for him.The problem i have is that i have a lovely teenage daughter whom also has seen and heard the change in her stepdad and isn't keen for him to come home because it upsets her to hear him be so different with me.I have tried to explain to her that it's the illness that has changed Russell................................. I feel stuck in the middle i want to have Russell home and i want my daughter to be happy and less anxious,has anyone been in this situation??

    Thankyou Emma XX

  • So sorry to hear your troubles.Maybe make a blog because you might have a better chance of an answer.Good luck xx

  • I thought i was blogging!!!!! I'm useless with computers and technology thankyou for your advice XX

  • Bloody hard one this.So easy for us sufferers to change personality.My life has been changed.Yes still here but that can change at anytime.Think us who have the disease must accept it and remember we cant or try not to take it out of our loved ones ! My family gave me a good talking too when I was all me me me and making them miserable.Dusted myself down accept it as cant change it and for myself getting on this site found I wassnt on my own.May sound hard but think a good talk through is needed.

    Thinking of you

    Griff x

  • Not quite in the same situation, but  I have found that the illness has heightened existing anger/blame problems, which I try to absorb, but my son won't accept,  He deals with it by withdrawing, which is a pity, but give your daughter benefit of the doubt regarding how she deals with it, she may be more mature than you think.  You can't split yourself in two, but you have responsibilities to both of them, and you may have to be cruel to be kind, maybe to them both.  As long as they both get your understanding and love, you can do no more than that.  They have to acknowledge other people's feelings, and you may need to tell them both that, more than once.  I'm sure you will find the strength to be there for him when he's at home, and I hope you can manage.  Someone suggested to me that the macmillan nurse talk to our son, we haven't done that, but I think we should have, I'm sure the kids take on board what they hear from a macmillan nurse, as they would respect and like them, whereas we are just parents,,,, know what I mean?  Anyway the best of luck to you all for what you are going through xxx 

  • Hello Emma - I do identify with you on this particular dilema. My partner Nielsen also has oesophagel cancer - I have three daughters but not with Nielsen. My girls have already been through a loss when their father died seven years ago and all three are very fond of Nielsen . The two eldest girls have left home but my youngest is still at home with us and this illness has opened a lot of barely healed wounds for her. Where we do differ is that Nielsens' personality has not changed and he is very conscious of the effects his illness has on us all and in particular my daughter, also a lot of her fears centre around me and the effect this has had on me and what the future will bring - has your daughter considered talking to anyone about how she feels ? I know my daughter finds it hard to talk about but it may help. She needs to understand if she can that as difficult as it is sometimes for us with the mood swings etc we would still rather have them with us than not and just how precious this time together is - it would be such a gift to you both if she could welcome him home whilst continuing to support you. I wish you all well during these difficult times and hope it all works out for you .


    Lyn x



  • hi lynchy,, i'm sorry to hear that you are at this stage now,, not nice ,, i do so feel for you,, have you got yr husband home now??  all our kids have long left home so i don't have this issue but they have all taken a back seat  for a while now as i've been so taken up with nigel this past year,, but they are all older in their late 20's early 30's,,  it must be different with children still at home as they see so much of the suffering and changes that can take place ,, our kids have seen a bit but not lived with it at all so in some ways don't have a clue whats been going on , we have been very open with them all ,, i'm sorry i'm probably not any help what so ever!!  but i think i would keep talking to her and however hard it may be for her she needs to be mature and try to understand that at the moment yr hubby has to come first... has she got grandparents or aunts and uncles that may be able to step in and offer her some support and make a fuss of her?  sometimes someone else can step in and bridge the gap and lend a sympathetic ear as she'll need to know that she will be listened to as well,, its so hard what ever way you look at it. so difficult at times to know what to do for the best,, you will feel torn whichever way you run with it,, its never easy when you feel like your being pulled in different directions,  i'm constantly wondering if i'm saying the right thing to any of our mob, 7 in all so pretty well strung out sometimes!!  i sometimes find it hard to appreciate that they are all worrying about their dad, and me too while we worry about them but i think so far they have all coped really well,, its when its all over i worry about how will i cope comforting them all when i've my own grief to deal with,, all but 2 of them have wives and partners so they mostly have someone to turn to apart from me,, i hope you find a way through this difficult time,, you never know your daughter may well surprise you and be ok,, we do tend to under estimate our kids at times , i know i have in the past ,, take care luv linda xx