Oesophageal cancer - End of Life

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Hi,

So I posted a month ago about my father, who was diagnosed with Oesophageal Cancer at Stage 4, with metastasis to his lungs and liver. It has now spread to his bones, resulting in a broken back, and the hospital are now looking to have a CT scan of his brain done tonight to look for any abnormalities cancer-related due to a very sudden, very severe overall decline.

I knew that we would not likely have long, but this is hitting hard and fast. I hate to admit I need support, as my father needs support more than anyone else right now, but I'm scared for both myself and him.

Since my previous post, he is now permanently in hospital and has not been able to leave since his admission maybe about 3 or 3 and a half weeks ago. I fear it is unlikely he will get better. My dad is now no longer eating or drinking at all, not talking or communicating, is often laying in his hospital bed with his eyes rolling upwards and rolling around the room. He is no longer verbal either with myself and family or staff on his word. They have started him on 3 different antibiotics in case he is suffering from infection (maybe from his liver, was the impression I got, since his liver function has further declined and he appears to have abdominal pain) and aside from this, can only be made comfortable.

The doctor I spoke to said usually they would move a patient in this way that is not responding to antibiotics to ICU, but under the circumstances and given my dad's diagnoses, they will not do this in my dad's case. Instead it will be a case of keeping him comfortable.

I will continue to be there to support my dad, even if only now all I can do is continue to visit and sit by his bedside. And apologies for the morose subject. But does anyone have any advice about what I should be doing for myself to process this and look after myself? It's all hitting me rather hard and I've been feeling extremely low. I cannot seem to help feeling guilty, or extremely critical of myself and my thought process. I am struggling to hold myself together. 

  • Sending heartfelt sympathy to you in this horrible situation. My husband is 7 months post op and doing well but the spectre of recurrence is always hiding in the background. There are others here who will be able to give you more practical support and information but as a thought …. has hospice care been suggested at all? Just thinking that it might be a more calming annd nurturing  environment  than hospital for your Dad and also for you. Have you reached out to MacMillan or to the oncology team for support for yourself? You are there for your Dad and that is a wonderful thing. Sending love.

    Geraldine Rose

  • Sorry I don't have much advice but I just wanted to let you know that I'm in similar situation. My dad has oesophageal cancer that has spread to his liver, lymph nodes and spinal cord. Last Saturday he ended up rushed to hospital with a ruptured gallbladder and on Tuesday he was sent home to die. Everyday he is declining and we know we're looking at days now. It is the most hardest thing I've had to do and he's been though so much since March 24 when he was first diagnosed and spent last year going through chemo and the Ivor Lewis op. 

    Please acknowledge that it is so very hard. And I have the guilt, I have two young sons and I have to carry on with life as normal as possible for their sake, but the guilt of giving them a normal life whilst my dad is dying and suffering is immense and I'm exhausted trying to juggle my roles of mother and daughter. I've been seeing a counsellor for a while now and have found it incredibly helpful so maybe when your ready to that is something you could look at. And I'm on antidepressants which I've found helpful in just dulling how I feel a bit. Back in the summer I was just so tired of feeling all my feelings and that has helped to control that so it's not so overwhelming. 

    X

  • I fear he's too sick for the time necessary it would take to find and be transported to hospice care. From all likelihood after seeing him last night, I wouldn't at all he surprised if he only had days left. The decline was very severe and happened seemingly overnight, the staff were even surprised by how quickly things changed. He has only just started radiotherapy and I think he was very recently in contact with Macmillan but I haven't contacted them myself.

  • I am currently just waiting for my counsellor to book me in but I was sceptical about whether I'd even be able to properly talk about it all, to be honest. So it's helpful to know that you've found that space useful and worth having. I'll definitely push myself to keep that appointment. Anything that can help right now would be a true life saviour. I am already on a lot of mental health medication as unfortunately I've been plagued with mental health issues for some time. I lost a previous partner only a few years back, and my best friend a month and a half ago, so I know it's really taken it's toll on me mentally.

    My dad was only given his diagnoses maybe a month and a half ago. It's happened so swiftly, it's difficult to even keep task of my own thoughts and feelings. He's gone from being diagnosed and visiting me himself about a month ago to now being bed bound, catheterised, not eating and drinking or talking or moving in the space of those four weeks. I am fortunate that I don't have kids. I'm 28, I still live with my mum so I suppose I do have that support (although, despite being separated for some time, she really isn't handling things well either) and at least I can solely focus on my own wellbeing. I just don't know whether I'm coming or going at the moment. There's just a myriad of emotions and I can't sleep at night and feeling so much guilt for having certain thoughts in moments.

    Feel free to drop me an inbox if you want to stay in contact, if you feel that might be useful. I absolutely wouldn't mind. Thankyou for taking the time to respond x

  • No wonder you are finding it so difficult, you have had to deal with things changing so very quickly, you must be in an element of shock too. We were told in May that my dad had approx 12 months left to live so we have had time to process it. 

    I'm just about to do the school run but I'll drop you a DM later on x

  • Well, we were told months a little while back. But given how he's presenting, I don't imagine it'll even be weeks. It's unfortunate. He may have an infection and with him just starting radiotherapy and already not eating or drinking much due to pain, I think it's just too much for his system to handle. They're concerned about organ failure, essentially. The body can only take so much. It's just happened so fast, it's hard to process anything.

    That would be lovely, but obviously no rush to inbox. Thankyou for your support x

  • god love you two, i think us lot that have had to deal with cancer wether a patient or a loved one, you always have that "what if" sitting on your shoulder.  no words, just sending lots of love, theres no right or wrong, just take care of yourself and reach out as much or as little as you can manage

    so sorry xxx jules