My girlfriend is dying and I am lost at sea

My girlfriend took ill in Feb with abdominal pain, jaundice, nausea. She was taken to A&E and treated for a biliary obstruction with a stent. Her bilirubin improved and all her blood levels returned to normal except her CRP for a while.

Since then she has been in and out of hospital with sharp pain under her right ribs radiating to her back, the diagnosies have varied from acute pancreatitis to constipation, treatment was usually pain medication. In all this time she was almost constantly nausious and has lost almost 20 kilos, something that was never addressed by the doctors. Never was there any talk of cancer, she even asked once and was told there was no indication.

She has been back in for 2 weeks and I found out yesterday that the doctors are almost certain my girlfriend has Stage IV metastatic pancreatic cancer that has metastasized to her liver and lungs. I've done my research and I know this is pretty much a death sentence for her.

She hasn't even found out yet, the doctors have been pussyfooting around with maybes till they get the final biopsies to confirm but I have gathered from my conversations that they are almost sure, the dark spots on the liver and shadow on the pancreas on the CT are very clear indicators.

Now I don't know what to do, she is in hospital but healthy, eating properly, 46 years old and clean living. I want her to come home and be with her family not stuck in a hospital with no visitors allowed. I know there are treatment options but that the hope for success is slim.

I feel like I need to tell her what I know and help her prepare but I also can't face breaking her heart and think I should let the doctor do it.. Then I feel like a terrible coward.. does anyone have any advice? I'm so so sad..

  • Im so sorry your girlfriend has been unwell for a long time without really knowing what the doctors think it is.You sound very upset and anxious and nobody would blame you for feeling that way. Its hellish not knowing for sure, and speculating and waking up at night terrified about the what ifs. My mum had a totally disabling stoke, it took nearly 5 days for that to be confrimed as they messed about and delayed on a confirmatory scan, Subsequently we were told she had bleeding when passing poo, and they told my dad over the phone they wanted to do a test which would have  involved sticking a tube and a camera up her back passage. He lost it over the phone and told them no way, on grounds she was already very ill, and if they had found cancer no way she couuld have survived surgery. We went through weeks then months as she declined, but she lasted another 2 year, with moments of sanity, they ducked out of mentioning she had vascular dementia on top of it.  You dont know for sure what ails your girlfriend, All I can do is wish you and her good luck and kind treatment from the medical staff.  Perhaps the hardest thing, but the kindest course of action is to remain as closely in touch with her and the medical tream, and for you to know you have her best interests in hand,  You dont mention if you are married or in a formal legal civil union, but when and if decisions re long term care or medical treatment need to be considered, there are things called lasting powers of attorney for health and welfare / financial decisions.  they are not free, but if she ends up facing a complicated diagnosis, it may ne useful to get legal advice sooner not later. Both my parents ended up needing me to act on their behalf to manage their finances to pay for their residential and nursing care and eventually to sell the family home and dispose of assets. Its a horrible situation, but having it all planned out in advance with the lawyers took a hell of a lot of pressure off me. Both parents made their decisions whilst fit enough to do so, and all the lawyers had to do was get it registered with the courts (not cheap) and I took copie of the papers from the couurt s to banks and buidling socieities and estate agents etc and job done. Making a will wont kill is the tough advice, but planning ahead can save endless heartache, and prevent arguments amongst next of kin if it does end up being a terminal diagnosis. Im sorry if Im  appearing blunt, but I hope that wont cause offence, it is based on harsh very personal experience, and I know of several friends who have gone through similar things, and all say that a plan ahead "in case" can give some respite from worry.  With all best wishes,  keep in touch with the group, and I hope for you both that you get clarity soon, and that its good news. all best wishes

  • Thank you Poland19 for all your words and advice. I am sorry your mother had to suffer excessively, I feel the same way about how my girlfriends illness has gone, there was almost certainly more that could have been done but the NHS here is in a bad way and sometimes things slip through the cracks.

    It is all very raw and I can't really deal with the legal side of things, we aren't married or in a formal union so I will definitely keep what you told me in mind.. my struggle right now is telling her, hearing her say the words "I don't want to die" to me on the phone when I know she most likely will, breaks my heart. But its not about me, I will be strong for her and if something needs organizing or doing I will do it. It's all I can think of to keep me busy and away from the terrible grief I am already beginning to feel. But she can't know that because I could be wrong and she could have a more good years. So for her I will be strong and for me I will learn to survive.. I just wish it all didn't hurt so much.

    P.S. I am not really uncertain about the diagnosis because I have talked to some of the team who are caring for her now and they have let me know they are almost 100% sure. Of course there is a tiny hope and I will pray for it but I have to also be a bit realistic.

  • What a sad situation for you and your girlfriend to be in, Sailor_Sam, and I'm sorry for the hurt that you're going through. I hope the final biopsy results arrive soon, so that the two of you can chart a path together.

  • Thank you for your kind words, I feel so grateful for the support right now because I just feel very overwhelmed.

    I did go and see her and told her what I know and she took it hard but I think she can deal with it. Now we have to make those difficult decisions once the full picture is clear, treatment yes/no and if yes then which kind.
    This all feels like such a mountain to climb but all we can do is take it one step at a time. I am glad there is a place like this where I can share because facing this alone with noone to talk to would be too much for me.

  • Hi Sailow_Sam,

     

    I can relate to the pain you are going through, it is really hard watching a person dear to us going through such an awful disease.

    I think that biopsies will help them with the diagnosis and treatment, as they can test what chemotheraphy works best against certain cancer cells.So there is still hope that a good treatment can cure her, no matter the stage. My mom has also been recently diagnosed with stage 4 b cervical cancer- metastised to a lung and adrenal gland,however, sounds like the doctors still think there is a chance for her cancer to shrink with a chemo cocktail , as that's what they have seen from the biopsy tests. So try to stay positive,especially for her!

  • Hello im very sorry to hear bad news. my partner just died  2 months ago august 2nd,aged 47, terri. We live in sunderland were together 14 year, she just qualified as nurse 2 years ago and about that time was starting to get serious back pain which she thought was sciatica, but after scans was confirmed as bone cancer, she took news to well even tho it was confirmed as being untreatable, i had to try and stay strong as she has 2 kids from previous relationship and her son is disabled with cereabal palsy, she was taking to hospice in july as cancer had spread to brain,but a few month prior made me promise if that happened i would take her home i suppose being a nurse she knew what hospice meant, i would mean passing away alone with people you dont know, so i took her home after 3 days, she fought day after day, such a strong women but sadly died 10 days later, such a beatiful looking women with her life ahead of her..im so lost and struggle to live on but made promise to look after her kids who also are really struggling, only advice i can really give you is to be strong and cherish the time you have, and let her know what you know...think8ng of you through this difficult time