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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.

Carers & Caring...

No. of entries: 263 | Posted on 28 Jul 2010 10:17
  • Dear Sue

    What a lovely thing to say and like you, I regard this place as a small, close-knit family where we can share our stories, successes and sorrows.  Who else could know us better than all those here who understand this particular journey we make.  Here is where we can be absolutely certain that people know and understand one another through shared experiences.  Everyone here is in my thoughts.

    Crystal xx 

  • Hello Susan,

    Thankyou for such kind words, it is strange how people are brought together but I do think things happen for a reason. I look upon my last year and my cancer as a gift, one hell of a gift I grant you... and maybe be a gift wrapped in barbed wire... but because of it I have found such warmth in people, kindness and support in places I would never have thought to go and with people I would not have otherwise met.

    Life is for living, I think sometimes we dwell too much on things or worry about daft stuff when in the grand scheme of things... does it realy matter. People matter, I have....mislaid... friends due to my illness but i consider it their loss, not mine, the friends I have now are just that...friends, and I hold them dear to my heart.

    Take care

    Issy x

  • Hello squiress,

    I am only sorry that support and advice is all that I can do... I wish I could change so much for people. It is so hard to watch poeple you love struggle at a time when they need help the most. You are right to be angry. Don't hesitate in keeping in touch with the upper GI nurse, they don't often call you...

    I found 'Scandi Shake' much easier to take than Fortisip or ensure... still can get boring but it does have a more natural flavour as it is made with fresh milk. There is a Fortifuice you can get and use it to make up small jellies, not too heavy and slip down well... may help to have more good days.

    Take care

    Issyx

  • Reading all your posts make me so glad that I have joined this forum.  When the day just seems as its if its not getting any better I read your posts and it makes me feel so much better.  Got call from hospital today and have appt to get results of PET on Wednesday am.  Dad was very quiet all afternoon - think he is reflecting on what he may be told.

    Hope everyone is well and will keep you posted on results.

    Take Care

    Lynda x

  • Well we have had results. Dad has ardenocarcinoma T4,N1,M0.  They have also found another primary in the rectum which is T3, N0, M0.  We are absolutely gutted.  Chemoradiotherapy is the plan but need to get dad stronger first.  NJ tube was fitted 2 weeks ago and he spent over a week in hospital with numerous problems.  He is now home but says his throat is sore and thinks its still the tube.  Docs have said this will be in indefinately at the moment.    Docs have said that due to the performation in the gullet the cancer cells are now in the chest cavity which is why there is nothing they can do to eradicate it.  I think it just a matter of time before we have secondaries in the lung etc. 

    Last 2 weeks just been such a blur, dad asked me yesterday to pick up papers for him to make his will.  Hopefully get chemo started mid to late august.  Not been online a lot recently but hope everyone else is doing ok.

    Lynda x

  • Hi everyone

    Well it is now almost 10 weeks since Derek had his stomach and a quarter of the gullet removed, the recovery has been hard and long but we are finally there, he is doing fantastically, he looks amazing and everyone who sees him says they cant believe what he has had done because he looks so well, we have been back to Christies today to see the Oncologist and he is really pleased with how everything has gone, they are confident they have got it all out but as he said it can come back, we all know this and it didnt upset us to hear him say it, because lets face it we are not stupid are we and know how cancer works, the reason the oncologist said this is because Derek is going to be having 3 more rounds of Chemo as a mopping up process and oncologist told us they are doing this purely as a precaution to try to stop it coming back and in case any cells have broken away.

    Derek is eating well although he does forget sometimes how much he has to chew his food and swallows to quickly then it gets stuck, but not as bad as before the op, since his diagnosis in December last year he has lost just over 4 stone altogether, but he has been a stable weight for the last month now so hopefully we may be on the uphill climb.

    Overall we are really happy and feel we had a very positive appointment at hospital today, hopefully it is onwards and upwards from here on in, its so nice to have something positive to post instead of negatives.

    Thanks everyone who has helped me and supported me while all this has been going on, and hope everyone keeps fighting this demon and dont let it beat you, remember it can be beaten,  live life to the full, because that is what we intend to do, we feel we have been handed a lifeline.

    Take care and look after yourselves and each other

    Steph

    Steph
  • Hi there

    My name is Jo and my dad has been diagnosed with OC; with secondaries in the liver... was a shock for all of us.. but he is very positive about everything.

    Started as ulcer like symptoms and stomach aches- put it down to stress after an accident at work... and within three weeks of seeing the GP he starts chemo on Thursday....

    Mum and I will be looking after him (despite his groans) and are trying to get him to rest and eat if possible..  any tips for soft diet to make it taste/look appetising??

  • Hi Jo

    Welcome to the group although I’m very sorry for the reason that you’re here.  It sounds as though you are very supportive of your dad and will be a great source of comfort and strength to him, along with your mum.  The initial shock of diagnosis is always very difficult, but somehow, once treatment starts, a new routine begins and you learn to take one day at a time and one small step at a time.  I wish your dad good luck with the chemo and if you need any advice about that and potential side effects, then you’re in the right place here as there are many on similar treatments.  As for food and eating, this is often a difficulty, especially when chemo begins, and of course because of the difficulty in swallowing and feelings of nausea.  We have a few recipe ideas within this group, which you might like to take a look at.  If you look to the top right of this page under the navigation tag, you’ll see a list Home, Blog, Forum, Members, RSS.  Click on Forum which brings up a list of discussions.  Click on page two and you will see there Recipes and Dietary Issues.  I wish you and your dad all the very best and good luck with the chemo on Thursday.  Keep in touch as there is usually someone around who can help with any queries.

    All the very best

    Crystal