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Firstly, try re-posting this in the 'Carers' section of this online community, as that often gets more responses.
Secondly - I'm sorry you and your sister find yourself on this horrible journey none of us wish to be on. By the sounds of things, you are both a little in the dark as to what is happening. Sometimes you really have to get in these doctors faces and demand some information so you can really get yours heads around what is going on. Does your sister have an Oncologist? Access to a Specialist Nurse? This is where I would start and I wouldn't stop until I had answers.
My Mum was diagnosed with primary liver cancer that has since spread to her sacrum, spine and lungs. She has had a course of Radiotherapy and chemo (Sorafenib) which has unfortunately, not worked, so she is no longer receiving treatment. She is on various types of morphine and other drugs for her pain relief along with a multitude of other drugs to manage all her symptoms. So far, she seems to be doing 'ok'...but the situation is ever changing, and as most...she has good days and bad and we have to adapt on a daily basis.
We now fall under our local Hospice/MacMillan nurse (rather than the hospital), who is an absolute god send. If there's anything I need (as Mum's main carer) or anything Mum needs, he deals with it for us, i.e. liases with the GP for pain relief meds etc sorts Mum out with any cushions or other things that might help ease her pain or make her life more comfortable (as sitting down causes her quite a bit of pain because of the secondary tumour in her sacrum)...it might be worth finding out if you/your sister can also have access to a MacMillan nurse/specialist.
It's a bit of a whirl wind, but you must must must ask questions and get to speak to whoever you need to, to get the answers you need. It's difficult for anyone to really know what to expect throughout the process of this awful disease as it affects everyone differently and in a variety of ways...but your sister's medical team should, at the very least, be able to guide you.
I wish you, your sister and your family all the best during this very difficult time.
Gosh J-Dils, have just read your profile - your poor thing. As you may have read above, my darling Mum was diagnosed with primary liver cancer which has spread to her pelvis, spine and lungs (that we know about!)...she's been in such excruciating pain as one of the secondaries in her sacrum area has basically been squashing her sciatic nerve :( She had some RT to her sacrum back in Oct last year which did help, but she still needs nearly 500mg of morphine per day just to remain even remotely comfortable.
How have you found your treatment?
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