Oesophageal cancer

Hi....my husband has just recently been diagnosed with Oesophagul cancer. As you can imagine we are devastated. He has been told it's a stage 3 tumor, and it is operable. He's finding it very hard to eat at the moment. He's not the best patient in the world, and I'm finding it very difficult to hold it together. I know I have to be strong for the kids and him. But he won't discuss anything, and he snaps constantly to me. I can't imagine what he must be feeling, and he tells me this most days !!!!!! We have had the scans, the biopsies and laproscopys. We are at the hospital tomorrow for the staging results! Jude X 

  • Hi Jude,

    Good luck with the results tomorrow. Good to hear that his condition is operable - I hope that goes well too. 

    It takes time to get your head around news like this, whether your the patient or his/her partner. From his point of view, there probably isn't a lot to discuss - it can feel a bit like being on a conveyor belt at first.

     

    Best wishes

    Dave

  • Hi Dave 

    Thankyou so much for your reply. I've just read your story! What fab news.....

    It's  such a help reading all this positivity. It's been nearly a month now since Johns diagnosis, and at the minute I'm still struggling to come to terms with it all. His eating has gone completely out the window. And basically lives on fortisips through the day. 

    I find myself constantly watching him, checking up on him, trying so hard to stay normal. It's amazing how life changes around you. I work in a school, so have just broke up for the summer holidays. We were supposed to have gone on holiday next Friday, but have had to cancel! 

    Anyway, like I said, we are at the hospital today, so another step forward to recovery !

    jude x

  • I don' t know if it is any help to hear that, post-op, things will get much better. My man had his op on Sept 13th and it was very difficult at first but gradually, things are becoming more "normal".

    We are so lucky to be in the operable group because there is real hope of a cure, even though the journey is horribly tough.

    Take heart.

  • Hi linda

     Thankyou so much for your response ! We have had weeks of hell since my last post on here. In and out of hospital through the chemo. His weight has dropped dramatically, and we are now awaiting the latest scan results, as well as getting a date for the operation

    i would love to hear about the days from the operation Linda , just to give us some insight as what to expect

    xx

  • Hey Jude, sorry could not resist. My brother in law has it. It will be tough and you are right life has changed forever. May I strongly urge you and youq husband to get psycological help too. Otherwise the emotional burden will fall all on you. My best wishes to you both

  • Hi

    I had an op for stomach and oesophagael cancer 13 months ago. 3/4 of stomach and 1/2 my oesopagus removed and what was left of my stomach realigned. The surgery went well and lasted approx 8 hours but that was more to do with the fact that as a frequesnt gym user they had a bit of muscle to cut through!

    The recovery was relatively comfortable but was in ICU for a week but to be honest about three days would have been ok..felt a bit of a fraud after that. The recovery process means coping with broken ribs and getting used to the fact that your stomach is so close to your 'throat'. Eating gets progressively easier and after about 6 weeks you are free to eat what you want albeit in smaller portions.

    I did have some very dark days but that was to do with the chemotherapy not the operation.

    A year on i can reflect back on the dark days on see them for what they were a tough mental process. I was not the best at communication but worked out a simple few phrases to help others understand what i was feeling. For example if i wasnt feeling up to visitors and someone texted i would simply reply 'not good' and they would understand that a visit was not the best idea and leave it at that.

    My wife tried to keep things as normal as possible and left me alone when i wanted to be but also refused to let me 'wallow in self pity' on those dark days...but as i said this was chemo not op.

    I am now back in the gym full time-started back in April have gained a stone and a half and feel fine although still have some issues with my ribs..but i may be to blame for that!

    I found breaking my recovery down into small sections was easier to deal with from walking for five mins to ten then onto fifteen etc.

    This a big op admittedly but one that is manageable for all involved. Can honestly say that....in a years time you may be thinking of entering the senior Mr Wales bodybuilding as i have been challenged to do!

    Best wishes and if i can help further please let me know

    Paul

  • Thankyou so much for this Paul, I really appreciate your input

    will be in touch

    jude x

  • Hi Paul,

    Thanks for sharing your experience, it's always good to hear about positive outcomes. Breaking challenges into sections is always a good idea. Someone once told me that the only way to eat a whole elephant is one bite at a time. 

    Best wishes

    Dave

  • You will be given factsheets about what to expect and I have found these very accurate although reading about the op and recovery is much different from living through it. Paul was treated at St Thomas' and the care was very good. Although the operation is a biggy, I found my man did not look as scary as I had feared, despite the tubes and drips attached. Pain was very well controlled and the staff in intensive card and high dependency units were absolutely excellent. After a few days, the patient gets to the general ward wherd the nurse to patient ratio is much reduced. Paul found this difficult as the attention to need was, therefore, reduced but you have to think of it as being a sign of getting better - that the intensive care is not needed at the original level. Over about a week, the tubes and drips are gradually removed and, as each one goes, you realise things are movjng on and getting that much better. It is quite common to get a chest infection and heart arrhythmia but this is promptly addressed and need not be a worry. It was to us because we hadn't known it was likely.

    One scary thing was the discharge into the wide world. From 24 hour nursing care, there is suddenly no-one around and a tendency to worry about each new symptom eg sweats and insomnia. The GP comes into his own here and maintaining a sense of proportion keeps worry at bay.

    Paul had his op 6 weeks ago today and the extent of his recovery is amazing! He is still very tired and cannot eat large meals but is well in himself and able to do most of those things that were really difficult on leaving hospital eg putting on a jacket. The pain has largely gone and the large wounds no longer look so angry red.

    There is still a long way to go and it is a difficult and emotionally draining journey but it is strange how soon the days pass and the darkest of days are soon behind you with the prospect of a healthy future stretching ahead.

    Good luck andbest wishes.