Excuse me I need a rant, this is gonna be long so apologies now but I need to get it off my chest thanks for reading
My husband got diagnosed with oesophageal cancer back in January 2018 it had spread to lymph-node‘s and because of that they would not perform the surgery to remove the oesophagus because they could not guarantee that he would be cured consequently he went on to have chemotherapy which upset his heart so had to stop it.
After a period of time he was offered chemo radiotherapy course which he undertook for 28 days solid. After a long wait a CT scan revealed no sign of cancerwhich bought us much relief. We returned after three months for a checkup following a further CT scan to be told it had returned back in the same places and to a further 2 lymph nodes
Another course of chemotherapy was prescribed on a different combination of drugs which he persevered with for two rotations at which point he started to suffer from severe symptoms of neurological damage to the point that his brain was sending a messages that it was constantly full up feeling that he had just eaten a three course meal and therefore eating food was becoming an obstacle he was gagging although not for any physical obstruction purely because he felt full.
Having previously relied on a feeding tube for nourishment in the early days he was loath to return back to that so started taking Aymes food supplements which he took for a couple of months which kept him nourished although he was losing weight but after a while he got so fed up with them so just stopped. Now he survives on just milk down to milk and water and tea milky coffee that’s about it no fruit juice because the acid cause him pain.
This was approximately f2 months ago when they told him there is no more they can do for him and would be put on palliative care and that was it. Over to the local GP and the Sobel house palliative nurses which was okay I guess but feel that they’ve just given up on him and that was the end of the road
He was given 3 to 6 months back then and he’s made 12 months so we are sticking two fingers up at the oncologist, but these last nine months have not been any quality just existing, not living, he is deteriorating in front of me, just a blank vessel, he’s there but he’s not there. he has no interest in anything, he don’t read anymore and don’t know what to do
I’m very lonely not for family and friends but for my husband to have him hold me, show interest in me, acknowledge my presence, hold my hand that’s all
At the same time I want this ordeal to be over for both him and for me he’s had enough. He wants to be at peace now, that sounds awful but this is the best thing for both of us.
then I have more thoughts in my head , how I’m gonna cope without him and go on wondering what the hell is the point of all this. If this is life you can keep it.
Anyway thanks for reading, I know you will all be dealing with just as emotional frustration issues if your own.
such a wretched disease. Stay safe and strong.
Jan.
Hi Jan and welcome to the online community
I'm very sorry to read that your husband has oesophageal cancer and also to read all the problems you've encountered since.
As the community is divided up into groups I'm going to suggest that you might benefit from joining the supporting someone with incurable cancer group where you can talk to others who will understand how you're feeling.
We also have a group called The Room where you can rant and rage and then slam the door! This group is good if you don't really want a reply but just want to get your feelings down on paper.
To join either or both of these just click on the links I've created and then choose 'click to join' or 'join' (depending on the device you're using) on the pages that open. You could copy and paste your post from here into a new post there so save you typing it out again.
x
Hello Buster99, I am very touched to have read your post, and relieved that you have now had a reply from latchbrook - I, for one, hadn't known about the Room group before. I too have Oesoph. cancer, and you might find it help to have a look in that group,too?
I am much earlier in my way through this disease than your husband, but I appreciate, as far as I can without the experience to come, how vile it all is for you and probably will be for me. First of all, you remind us of how awful it is for our partners, like you, who struggle in a different way with our condition. I am sure, even if he can't express it, he knows it's hurting you as well as him. He's frightened. It sounds as though you have some broader family, and I hope you are able to talk to them about your feelings. I'm sure that they would like to think that they can offer you support and help and love.
Some other things you might like to consider: try using the Macmillan phone helpline. It's not that anyone on a phone can can physically give immediate help but just by talking to someone who understands really can help a little, believe me, it has for me.
I don't know what you and your husband's beliefs are (mine are thoroughly atheist (at the moment!!!)) but there is a group here in this community for Atheists, etc. And you might consider the group for Incurable Cancer. Forgive me if they're inappropriate suggestions, but you and your husband just might find them helpful. I have on occasion.
I hope you and your husband can get through this. But it's quite understandable to feel hopeless in such circumstances so do ask for help wherever you can find it.
x
Hi Buster99
so sorry to read your post and really pleased you have found your way to this community for support
dealing with this disease and it’s affects on our loved ones is hugely draining and generates so much anger within us, the injustice of the disease is unspeakable.
i do hope you have been able to make contact with others here for support and you feel less isolated knowing there are understanding people here you can reach out to
take care and be kind to yourself and hope your husband is more comfortable
sending you strength and a cyber hug
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