My Dad

[Lem]

My dad (at 77) was diagnosed with phase 4 PC exactly 1 month ago.  He'd been feeling a bit off and had been to the doctor several times with stomach pain and given meds for IBS and gastro issues.  He was taken into hospital with pain and they thought at first it was a gallbladder issue (we now wish!). After tests he was finally given the news (while on his own without me or mum there to hold his hand, I'm still furious about that) that it was PC and inoperable. 

We had consultations with the oncologist who explained the options and recommended treatment with gemcitabine and Dad had his 1st dose of chemo on Wednesday. He seems to becoming quite well with it and no noticeable side effects at the moment (except he's very tired).  The oncologist did say this was the least toxic treatment available. if he does not have side effects from this is it worth suggesting he asks for something a bit more (such as GemCap)?

He's now having issues with eating and cannot eat very much and is getting very tired and in pain (especially overnight).  As far as I know he's taking codeine, paracetamol and liquid morphine but the pain wakes him up overnight. Can anyone offer advice on this, do we just need to demand more powerful painkillers or are there other options that can be suggested?

He's being treated at a hospital that is not a specialist centre and the oncolgist believes in "quality over quantity" which is something my Dad is very keen on.  However, I'm a bit concerned that he seems to have been written off a bit.  The hospital is not a specialist cancer care unit and when i mentioned it, there did not seem to be much encouragement on contact with the nearest one (Bristol I think).  Should Dad be pushing for an appointment with a specialist care unit?  There seems to be an issue on consistency of care as they live in 1 county (Dorset) but the hospital is in Somerset and it seems the 2 healthcare operations don't communicate so the GP (in Dorset) isn't getting info from the hospital

I seem to have regressed into a small child - I'm 37 and should be able to cope with this but I just feel like a tiny kid and don't want my Dad to die.  Sorry, I guess I'm waffling a bit but just want to try and get info and make sense of all this.

Any and all advice gratefully received.

Lem

[J_T]

Hi Lem so sorry to hear your news. My husband (61) had a similar story, told the awfulness of his position with no-one there and I feel your anger. Our onc is not what you would call upbeat but we're ignoring that!

Your dad is on the chemo very quickly so that's good and good that he's tolerating it well. We are still waiting to see where my husband's bilirubin levels are so we can get going with some treatment (he had awful jaundice for a few weeks). We are hoping to go on folfirinox which is showing better results but is apparently more toxic that gemcitabine. You have to be pretty fit to have this treatment.

We are finding, as have many people here that YOU have to be pro-active and push for treatments and everything really so don't be fobbed off. Have you contacted MacMillan? They are really good and well worth having on board.

As for pain, again my husband is very similar to your dad. He progressed to 2 x 30/500 co-codamol 4 times a day with Oramorph to be taken as and when but the MacMillan nurse changed him to a slow release morphine tablet (30mg) that he now takes twice a day with 2 x 500 paracetamol 4 times a day and the Oramorph when he needs it. The regimen, which he only started at the end of last week seems to be working a bit better but its not settled down yet. He had a great night followed by a not so great night. Tonight seems to be another good one so far. Pain definitely seems to be worse at night. The slow release morphine tablet does come in different strengths so talk it over with your onc or GP and see if this may suit your dad better.

They shouldn't be writing your dad off at 77, my own dad is nearly 92 and still going strong so keep on pushing because he's your dad and he's bloomin' well worth it!