A forum for advanced pancreatic cancer issues

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confused
Posts: 1
Joined: Wed Nov 21, 2012 1:45 pm

Re: Another 'newbie'

Postby confused » Wed Nov 21, 2012 2:17 pm

Hi just want some advice really mum had stent fitted in September but is telling everyone that she has had the tumour removed and is going home when better. The tumour is inoperable and she is having no treatment only palative care. Cant find anything out from staff just saying she is very poorly. So basically she has no idea she is dying should they not have told her?. She is in a rehabilitation unit but has lost all mobility and forgets to walk she is very confused sleeping all the time eating very little. We dont know if it has spread or the time she has left. What should we do?

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Another 'newbie'

Postby susikus » Wed Nov 21, 2012 3:14 pm

To 'confused' I would say you need to talk to the staff. Are the palliative care team involved, if not ask why not and ask to meet with them. Or ask for an appointment with your mother's consultant. Talking to ward staff and junior doctors often leads to not much information and further confusion in my experience. You can ask what your mother has been told - it may be that she has been given more accurate information and has 'chosen' not to hear it - you also said she was confused so maybe she did not understand. Who is her next of kin - the docs will not want to deal with lots of people and that can make it difficult in some family situations. But as your mum's family you do have the right to better quality information and care. It is sadly often the case with the NHS that you have to be assertive to get the care you and she deserve. Good luck and do come back and tell us how you get on. So sorry you had to join us in this horrid situation. Lots of love, Sue, xxx

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Another 'newbie'

Postby susikus » Wed Nov 21, 2012 3:30 pm

To LesleyJS, goodness me I hear you! I can remember feeling exactly the same when Pete was diagnosed and yet everyone told me it was all going as fast as it could. We were also told terminal pancreatic cancer on the basis of the CT scan. A biopsy followed a week later - my understanding is that they need the biopsy results to be able to know what chemotherapy to offer - and then we waited for the result before referring to oncologist (on the basis that what if the biopsy didn't show a result - which is what has happened for you), then having got the result we had to wait another 10days for a consultant appt, then a stent needed inserting so it was another 2w before chemo could start! So what can I say that might be any help at all? First of all be polite but be persistent - ring every day, ask questions, ask staff to commit to helping you. In retrospect I did do a lot of this but wish I'd done even more. Secondly explore all the drug options - is Tony in pain, needing painkillers? Is he nauseous, needing better anti-nausea meds? He is losing weight, is he on Creon? Could he have steroids - these increase appetite and feeling of well-being? Is he being seen by the palliative care team - get them in as they are superb at symptom control and quality of life. Is he getting GP support - have you had the Disability Living Allowance sorted out and applied for a blue badge? GPs can be great (I work with them) but they are also not expert in anything so you may derive better help from some other health professionals. And finally (I know - loads to take in - sorry it's felt a bit rushed) have you looked into nanoknife - look at other threads for more info - this is something I wish we'd known about much sooner. Please do come back and tell us how you're both doing, love to you and Tony, Sue, xxx

LesleyJS
Posts: 3
Joined: Wed Nov 21, 2012 11:30 am

Re: Another 'newbie'

Postby LesleyJS » Wed Nov 21, 2012 8:27 pm

Dear Susikus, you've made me feel better already-thank you!! Your advice is really helpful and at last I've found a direction and have some goals to aim for. I will be carrying out research on all of your suggestions as soon as I've finished this message. With the help of our excellent GP Tony's pain is currently well under control with oral morphine. Since changing to this from Tramadol the nausea has subsided and he is on steroids to increase his appetite. I'm glad to say that has improved somewhat-I can do some proper cooking again!
I wish you and Pete all the very best. Everyone out there is in my thoughts. Love, Lesley X

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Another 'newbie'

Postby susikus » Wed Nov 21, 2012 9:14 pm

I am sorry that I was not clear Lesley, my Pete died four weeks ago. He was diagnosed in August and the end, when it came, came a lot quicker than anyone could have predicted. We did, though, make the best of those two months and I have no regrets. Pete would not have wanted to be ill for a long time and would have hated needing care. You can read more of our story on the 'new to this' and the 'living day by day' threads. with love, Sue, xxx

LesleyJS
Posts: 3
Joined: Wed Nov 21, 2012 11:30 am

Re: Another 'newbie'

Postby LesleyJS » Fri Nov 23, 2012 2:57 pm

To Susikus. I am so sorry to hear about Pete; please accept my deepest apologies about my misunderstanding. Today we 100% confirmation that Tony has pancreatic cancer and we are hoping to have an appointment with the oncologist next week. Thanks to your advice I think we are better equipped to ask the right sorts of questions. It's a huge learning curve at the moment! I'll let you know haw we get on. Love Lesley XX