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Well having had the news that the cancer had returned post Whipples in April for my dad, we were assured that there was lots to be done for managing the pain. We seem to have gone from codeine to morphine patches + liquid in a very short space of time, 2 failed nerve blocks, gabapentine which turned him into a zombie and last week radiotherapy and nothing seems to be working. My dad's pain seems to have stabilised ish at around a 5-6 out of 10 (10 being bad) but the pain specialist seemed confident that they can get him down to a 2 out of 10! (Not sure how well this sytem is working but it least it gives me an indicator of how much better / worse my dad is feeling).

I know that another option they're thinking of is ketamine. We're trying hard to get the balance between pain control and also dad being alert and able to drive, which is so important to him. He's reticent to start on the ketamine (just think he can't face another round of new side effects).

Any experiences good or bad of ketamine?

Feels like I just keep expecting too much. But people keep saying that he should be relatively pain free and I just don't know why they can't manage it. It's so sad and frustraing when we know we have limited time and we want to make the most of it.

C :-(

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Hi there

My husband was on gabapentine 300mg 3 x day, it made him so sleepy, it's for nerve damage.

Have they given oramorph solution? As Andy was on 20mg/1ml and it was a break through pain relief, as and when needed?

Maybe ask?

Hope this helps

Much love

Lynne xxx

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Hi Lynne

Now he's off the gapapentine we think it just wasn't contributing much. He's got the oramorph solution and should be taking it as and when he needs to, like you said, jut to 'top up' really. However, because fundamentally the level of pain is still bad he's taking it really regularly. He may well need a higher dose patch. We have another appointment with pain specialist on the 8th and then results of a full can on 15th to see how the cancer has progressed. There's still a chance the radiotherapy might make a difference I guess but it's been at least a week so I guess unlikely.

take care,


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Hi there

Well I kept a diary for my own benefit, I wrote down every time Andy had any medication and what it was.

The palliative care Dr found this a help too, he initially was on low dose of oramorph, and having 10ml every few hours, but very quickly this increased to 15ml and he said in the end it just wasn't doing anything, when they changed the dose to 20mg/1ml he only needed 2ml and could go 4/5 hours in between doses.

No one should be in pain, I do realise it's frustrating having to wait for appointments and scans.

Hang in there


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