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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.

Finding the last few days difficult and worried about the next few :-(

No. of entries: 14 | Posted on 15 Aug 2012 4:14 PM

Finding the last few days difficult and worried about the next few :-(

  • Hi all,

    My Mum was diagnosed with OC in early April this year and has been in a hospice for the past month, slowly deteriorating.  She is on Diamorphine via a syringe driver etc. with other drugs...  I have been visiting her with my Dad on an almost daily basis, sometimes to support my Dad as she was angry for a time and could be nasty.

    When I visited her on Monday afternoon she was very quiet, like the fight had gone out of her.  With yesterday came another change.  When I visited in the afternoon she'd been out of it all day (asleep) and not drunk anything.  She's not eaten solid food since the end of May and struggled with pureed food.  My Mum hasn't had any pureed food for at least 6 weeks and has survived on sips of water etc. so far.  She's obviously lost a lot of weight and has gone skeletal :-(

    I know time is short now as she is mostly asleep and barely aware of what is going on when she semi-wakes.  I visited alone this morning and sat with her for a while.  I tried not to cry because I didn't want to cause her any upset, but I ended up breaking down.  My Mum came round and tried to comfort me by putting her hand on my head.  I should be comforting her, not the other way round.  I said to her to ignore my tears and pulled myself together.  She can barely speak now, just a whisper.  For the rest of the visit she just held my hand and we said nothing.  She seems very tired now.

    I feel so sad.  After my visit I spoke to one of the nurses who said my Mum hasn't got long left (I asked outright).  I know my Mum is going to, but I don't want her to die.  I know she is in pain and will soon be free of it but I'm finding things very hard today.  I know I've had since April to prepare but I know I'll never be ready for the day she passes.  I know things will get harder over the coming days/weeks as other things are happening too.  I've been in tears on and off since the early hours of this morning.  Today is also my 25th wedding anniversary, what a mixed day!

    My Dad also has renal cancer and will hopefully have surgery in a few weeks.  I worry that I will lose him too ....

    I try not to think about this but it's like everything is happening at once.  Also, my youngest will be leaving for uni next month, so I'll be an 'empty nester' in my mid '40's.  Several changes in a short time ....

  • Hi, My mum has also been diagnosed with OC cancer and until recently we thought she was currative in fact her operation was due to happen tomorrow. Unfortunately the tumour grew and spread during chemotherapy and she is now terminal. My mum is still at home and is struggling to get her head around the fact that she has no future to plan for. I feel so scared for when I have to go through the stage that you are now at and I think it is natural that you are going to break down from time to time. Like you I want to be strong for my mum but also like you sometimes I cant because not only am I scared for my lovely mum but also for me. I am sorry that your dad is poorly to you must feel very conflicted and I think one of the hardest things is that there is nothing that we can do to change the course of life. Things will happen whether we want them to or not. I dont want my mum to die and I know we would hold them to us forever if we could. I also feel for you with your youngest leaving home my oldest leaves on the 1st September and although I will still have my youngest girl with me it still feel like I am losing too much too quickly. I am also in my 40's and know how hard this all is, i look at people with their elderly mums and I feel really jealous that I wont have that. I, like you, don't know how to do this part of life it is the most difficult thing I have ever faced and at the end of the day we are the ones who have to go through it regardless of whatever support is available. I'm afraid I may not be saying the right words to help you but I am happy to talk whenever you need it Fran xxxx

  • Hi Carer66,

    I am so sorry to hear about your parents. It must be hard to take on so many changes in such a short period of time.

    Maybe if you call our free Macmillan helpline on 0808 808 00 00, they should be able to give you emotion support and guide you though this hard time.

    Best wishes,

    Macmillan Community Team

  • Thank you Fran and Moderator for your replies.  I appreciate you both reading my post.

    Fran, somehow like me you will find the strength to somehow get through this.  I'm sorry to hear about your Mum's illness.  It is hard, I take things day by day.  I've supported my Mum the best I can.  She has rejected all treatments including the operation, chemo and radiotherapy.  Her tumour was quite large when diagnosed and it had obviously been there for some time.  It is the squamous cell type cancer.  My Mum was a heavy smoker for most of her adult life, only quitting smoking a few years ago.  She also liked a drink!

    Situations like this make you really take stock of life and make the most of what you have.  I've lost the majority of my family to cancer over the past 20 years.

    I don't go to church but I wonder if there is something after death?  That is partly what I;ve been thinking about today.  Will I see my Mum again etc?  My Mum had Peritonitis in May and we were told she would die on the operating table, but she survived the operation despite having part of her lower bowel and stomach removed and having 40 stitches!  However, since then her quality of life considerably diminished although she healed well from the op :-(  She often said after she wished she'd gone on the operating table.  I feel like I'm saying goodbye twice.  I'm just having a really bad day :-(

  • Update - My Mum passed away yesterday :-(

  • I m so sorry that you have lost your mum,my thoughts are with you and your family.

    Sending love & hugs

    Annette x

  • so sorry to hear your lovely Mum passed away, and your father is ill too my thoughts are with you xx paula

  • So sorry to hear your sad news. You must be feeling so lost and sad today. My mum passed away 16 months ago in my arms so I do know how you are feeling. My thoughts are with you and your family and wish you lots of strength and courage for the coming weeks, try to remember good and happy times with your Mum not the last struggle. Easy to say so difficult to do. God Bless. xx

  • so sorry to hear your sad news, my thoughts are with you at this time xx

  • so incredibly sorry to hear about your mother. My thoughts are with you at this terribly sad time. Much love, Louise x

  • Thank you all for your kind words xx

  • adding my condolances to all the others, really feel for you, wishing you lots of strength in the coming days and hope your dad copes as well as can be expected.  with love kaitie xxx

  • Also sending you my condolences for your so sad loss and hope that you and your family and managing through this difficult time. Sue X
  • Hi hon, I am so sorry to hear that your mum has died. My thoughts are with you. I hope that there is something after death, I know that when my mum goes she will never be very far away whether it just be because she is so deep in my heart or because there is more I dont know. I am not a religious person so am unsure about anything like that really. I just know that we keep them close by the fact we loved them so much. I wish there was something more effective that I could say but there isnt. Lots of love to you and your family. Fran xx