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This is my first post on here, I have lurked around a bit trying to get bits of information here and there since my mum was diagnosed and finally plucked up the courage to tell my story.

My mum is almost 72 and was only diagnosed when a routine blood test back in February showed some abnormal liver results. Of course, when she had the CT scan it showed that it had already spread to her liver.

I live in the US and she is in the UK so it makes this even harder! I want to know the truth no matter what but she just accepts whatever the Drs tell her and doesn't ask for more! The result of this is she thinks she will get well after her chemo and have a few more years! Problem was the first Dr she saw was a GI consultant who told her the chemo would treat both pancreas and liver, she then interpreted this as a cure!

Later, her oncologist told her the chemo was palliative care only and would only give her some extra time and not cure. Without asking she regards this as extra years not weeks or months! I keep telling her to ask questions but I am wondering if she just doesn't really want to know although she keeps insisting to me that she would rather know!

I was a registered nurse before I had my family so knew this was bad as soon as I heard the diagnosis so when she starts talking about years from now and what she plans to do I don't know what to say so I generally say nothing and change the subject!

She started her chemo early May and had a second scan after a week or so, it showed that it had spread to her lung. She has another scan next week which will be after her 3rd round of chemo (3rd month of 3 weeks on 1 off Gemcitabine only as she was told anything stronger would kill her).

She has lost about 3 stone, although she is enjoying her food again but in smaller amounts.

I have been so worried about her as for the past few days she seems to have been so much more lethargic, dozing on the sofa on and off all day and not even bothered to watch tv. She used to be an avid reader, knitter, cross stitcher and loved all the soaps on tv. Now she is doing nothing and says she can't be bothered. I have read some of the stories on here where people have said their loved ones were very tired but then suddenly their energy levels came back so I am hopeful that she has better times to come!

My aunt is her main carer, she is there most of the day for her (she is widowed and lives alone) and takes her out sometimes in a wheelchair (she no longer has the energy to walk anywhere)!

Like many people have already said it is so good to talk to people who are going through the same thing and I am so grateful for those who have already shared their stories.

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It must be so hard for you being so far away from her, particularly as you can't get answers to the questions you have but I'm glad you have posted your story. I am new to the forum too but lurked for a while. Have you been able to speak to her oncologist by phone? I don't know much about these things, but I would have thought that would be possible? I really hope your mum's energy levels pick up.



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Welcome both to the forum.

You will find it a great support I am sure.

As for speaking to the oncologist I think it varies from oncologist to oncologist. Normally you would get their secretaries number although you might find the oncologist is limited to what they can discuss without your Mum giving prior permission.

Deb, hopefully once the chemo kicks in your Mum will feel better but both the cancer and the treatment can cause lethargy so it's not surprising. Will have fingers crossed.

Cathy xxx

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How is your mum doing? Did you find out if she takes creons? I hope the scan results are positive for her. My mum had her second chemo treatment last week and hasn't had any awful side effects although she wasn't herself today.

Trying to stay positive and I am sure you are trying to do the same.

Take care. Sue

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