Advice needed please

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Long story alert

Please bear with me! My ex husband went to his GP in September, CT scan showed 2cm pancreatic cancer mass. Southampton consultant said ok to operate, 95% success to be cancer free after. Fast forward to last week (2nd CT scan 3weeksago): He got an email from Southampton to say come in for a pre op appointment on the 11th of December on Monday. Within an hour of receiving the email he got a call from the consultant to say that the mass had spread to his stomach and was now inoperable?!? He was told this bluntly over the phone with no one with him, he was not even asked if he was with anyone for support. Can you imagine his shock??? No information other than you’ve got about 6 months to live…. I rang the consultants secretary and said that I was disgusted by this callous treatment and asked that they ring him to explain exactly what was going on in a compassionate way. No call so I rang AGAIN and eventually a cancer nurse rang him to apologise. He saw his GP yesterday who was unable to give him much more information on going forward. How long has he got? She didn’t know, what happens next? She was a bit vague!? He is now waiting for an appointment with a pancreatic specialist. He’s in excruciating pain and has been prescribed cocodomol and paracetamol only which isn’t really touching it. He currently lives in Guernsey and is moving back to Dorset to be with us on Friday. My question is where do I start! He will need help financially, do macmillian help with this, and obviously needs to register with a GP over here too. I just feel helpless & that this is not how you are supposed to deal with such devastating news. If he had had the operation there and then would he not be facing death now??? (I know you can’t answer that obviously) He asked me to tell our (adult) children that he’s dying but until I’ve got the full picture I can’t do it to them but if he as the patient isn’t being told anything I don’t know what to do…. Do I just take him to Poole hospital on Friday afternoon and beg for help? This is a ridiculous situation… and breathe, sorry I just feel helpless

src60 4 days ago

Hi Rachel.Cb07c62

So sorry to read your story, truly shocking how the consultant treated him. Guernsey's healthcare system is somewhat different to the NHS so it could be helpful that he is moving back to Dorset.

He might find it useful to contact Macmillan and ask to speak to one of the benefit advisors to see what he may be eligable for.

Focusing on you now - feeling helpless is fairly normal but so glad you came here. Something I find quite helpful is looking at Your feelings when someone has cancer as being able to recognize these emotions and accept them as normal and valid can help make them feel less overwhelming. One of the elements of the living with less stress course I did was actually about conscious breathing so really relate to your comment on "and breathe".

For your children it may be worth looking at the pages on talking about cancer and how that can be helpful.

<<hugs>>

Steve

Rachel.Cb07c62 4 days ago in reply to src60

Thank you, so appreciate your words I do a lot of 4-7-8 breathing, couldn’t cope without it! x

Malengwa 3 days ago

Hi Rachel, im sorry to hear that you have been treated this way. When my husband got the news following a scan that his cancer had spread, they switched his appointment from phone to in person. I knew instantly that it meant bad news. Like you, he had gone from a good chance of survival to 12-18 month prognisis over the space of a few months. I often wonder if he'd had surgery sooner, would he still be here? Of course i didnt know nor will I ever know.

Hopefully the move will put him in touch with a local hospice, in fact you can research this anyway, I did, ours did self referrals if required. He definitely needs better pain relief so you can ask about that. If you have GP in mind, get him to register asap. I dont know how things work in Guernsey but you can access your own records via NHS app, is there anything similar there?

I dont know about finance, it may depend on if he is a UK citizen who just lived in Guernsey or not, but I found MacMilllan very helpful in sorting out things he was entitled to.

I hope you find answers soon, I found the waiting and not knowing really tough.

Rachel.Cb07c62 3 days ago in reply to Malengwa

We’ll never know about the surgery time line so I’m trying not to think about it too much…. I’m so sorry you’ve lost your husband to this vile disease and thank you so much for your kindness is replying to me.
He is English he just lived over there for a couple of years. As soon as the ferry docks I’ll be whisking him to get registered at a local gp’s surgery. He’s in agony with inadequate pain relief. Pain can make you give up so as soon as I can get him help with that the better. It’s spread to his stomach in a matter of weeks so I’m guessing that’s the pain source. No one is telling in anything after the horrendous way he was told, thsts what’s so wrong. Thank you again for your kindness x

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Advice needed please