Mum decided against further chemo…now EOL

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Mum was diagnosed with pancreatic cancer over 3 years ago and was fortunate to be offered surgery. After a complicated recovery she had chemo for 2 years to control metastases into the hepatic portal vein, which it did. She was unable to tolerate further chemo so made the decision to stop in November. In March she found the aggressive cancer had spread into her liver and a stent was fitted. Although initially effective she is beginning to decline. The oncologist has been pushing her to take a ‘window of opportunity’ to have further chemo but she is struggling with food tolerance, her blood glucose levels are off the chart and she is increasingly in pain and has lost 20lbs in 6 weeks. 

She has felt pressure from the oncologist and some family members to go ahead with chemo but now just feels too weak and I have been the only one to stand up and say that she isn’t strong enough to tolerate further chemo and all the possible side effects. I have tried to be impartial until now, but once I told her I don’t think she should have it now, she was immensely relieved. Obviously I would support whatever decision she made but she says her gut instinct is telling her enough is enough - and so is mine. 

if she were stronger I would say it would be worth the fight, but there is no hope of a cure, only control of the disease. Mum is in a bad place psychologically right now and doesn’t want to die, but equally she doesn’t want to live a poor quality of life at any cost. It’s been a very turbulent few days trying to support both my parents and advocate for mum. I just hope the coming weeks are peaceful for her - I hope palliative care teams show up for her and give the care that she deserves. 

She sees the palliative care team at home already but now have to negotiate her accessing inpatient care and don’t know where to start. Feeling tense and worried about what may come. 

  • I really feel for you all in this situation. I don't know if you're talking regularly with the palliative team, but I found that helpful with my Dad, as I could tell them honestly how things were and they could go in to see him with the agenda already set - Dad's problem was that he'd had enough and didn't want people trying to keep him going for longer, but it was not easy for him to open up that conversation with them. 

    I'm sure the palliative team will help advocate for your mum too if they know what your Mum wants, and you won't feel like the lone voice. Beyond that, it's a case of helping other people in the family to accept the situation, and for your mum to have a chance to come to terms with what is happening. It may be possible to get some counselling support, and that could be useful for you and your Mum. The hospice near my parents was able to refer for psychological support (and I think the palliative team could too, as they were strongly linked). I was very lucky to be offered counselling when I was visiting my local cancer support charity to get information for Dad. They asked if I would like counselling. I hadn't thought of it at all, and said, 'well, no, surely it is for the people with cancer who really need it'. But they said they provided their services to support the families of the patients as well, and that I definitely was eligible.

    I found it incredibly useful, and it helped me to concentrate on carrying on making memories with Dad, and focus on the good times and the positives, which was enormously helpful as dealing with the unknown and such an awful time was really hard. The palliative team must be very used to familiies where not every member is on the same page. I'm sure they can be a good support to you in how to communicate your Mum's needs to the rest of the family as well.

    There's no denying that dealing with the unknown at this time makes everything doubly scary and stressful. I'd see if your Mum is happy for you to be able to talk with the medical teams around her (and be able to share the load with your Dad maybe). It will help you to feel more confident if you know what's going on and have someone you can raise your concerns with.

    I wish you all the very best and that you can access the help you need. And in the midst of all the worry, I hope you can grab the moments to look through happy photos, or share a TV program, read a newspaper article, or just be together.

  • I'm so sorry to hear about your mum, it must be a really difficult and hard conversation to have with your family when trying to advocate your mums wishes as I'm sure there is nothing in this world you want more than for your mum to continue treatment so you may have that additional time. 

    My husband was diagnosed last week with a 3.8 tumor on the pancreas that has spread to both sides of the liver. We are waiting to find out the treatment plan. I've never felt more lost in my life. However, this is about them, not us. We have to put our feelings aside and hear their wishes instead and that I think is going to be the hardest of all. What your doing is amazing in advocating your mums thoughts and respecting her wishes