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.
Buster99, my husband also has oesophageal cancer, diagnosed in May of this year, at the time of diagnosis he was advised that it had already spread to lymph, liver and lungs... incurable, inoperable... I am not sure which oesophageal cancer your husband has or whether he has been tested to see if he is HER2 positive.. if not please ask them to test....there are so many trial meds for this condition and immunotherapy which can help in certain conditions.
My thoughts are with you both, here to chat if you would like
Lowe'
