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.
I can't offer any words but a panda might help a little tiny bit
hugs
Carolyn
xxx
real life success stories to remind you that people do survive breast cancer
https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457
Dr Peter Harvey
https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf
Dear ,
I'm sorry to hear about your husband and your current situation. I lost my father to oesophageal cancer 15 years ago when he was 74. He was also unable to have the operation and lasted for 18 months from his diagnosis to his death. Fortunately he did not suffer the same neurological damage that your husband did so he was very much present and aware until shortly before the end. However by then he was taking so much painkiller medication that he was paranoid and thought that unspecified people were trying to poison him although he did still recognise his family.
It is so hard to deal with and I still feel guilty that I could have done more for him than I did. I also recognise the guilt at feeling that they have gone though enough now and should be allowed to go peacefully and with dignity. It must be devastating to you for him not to be emotionally engaged.
Sending you love and hugs.
Gragon x
Sorry for all the things you have to bear from this cruel disease. Mine has spread to my brain now, the one thing I dreaded, We have no option do we? You have to see your husband deteriorate in front of your eyes, so painful to watch. I try not to look in any mirrors because I do not recognise the person reflected.My prayers and good wishes to you both and I hope you both have the outcome you wish for xxxx
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