Discussion forum - Pancreatic Cancer UK

Hello all this is all new to me I have never used a forum before, I guess someone out their is reading this & may be able to help, if not, well nothing ventured nothing gained.
The story so far..
My mother in her early sixty's was diagnosed mid April following suspected gall stones, following a CT scan, having become jaundiced she was informed she had cancer of the Pancreas & a tumor measuring 2cm,the good news was it was found early & their was no sign it had spread, my mother was fit & active all indications were this was operable.She had a Stent fitted which has sorted the jaundice. She then waited six weeks to have an endoscope, this revealed the tumor had now grown to 5cm & cancer had spread to the liver. This was a massive blow to her & all the family, she has now undergone two weeks of chemo including clinical trials, sorry but I don't know the names of all the treatments she is receiving. The problem now is she is struggling with pain so much so that today she has been unable to attend her chemo therapy session, she has been bed bound for most of the last week & eating very little, my Dad is at a loss as how to comfort her any further as am I my wife my two bothers & their wives. She is so determined to get back to some sort of normality but this pain she is suffering is preventing this. We were old by the Oncologist very early on that their is no reason my mother should suffer any undue pain, we all, my mother included, do not know whether the pain she is experiencing is the treatment taking effect on the tumor & something she can expect or should this be controlled. She has tried some of the Morphine based pain relief offered but found it left her feeling very fussy headed & quite frankly depressed. I would like to hear of other peoples experiences so at least we can be asking the correct questions of the doctors. We all want Mum to have the best possible quality of what ever life she has left.

Hi Peter
I am so sorry to hear about your mum - in particular that her cancer spread before they could try surgery.

I lost my dad to Pancreatic Cancer just recently, but I can't help with your question about pain as my dad had little or no pain during his illness. He was on a low dose slow release morphine (Zomorph) for most of the time. However, I just wanted to let you know I am thinking of you.

A couple of suggestions:
- has your mum got a Macmillan Nurse or specialist doctor who can advise on pain relief?
- there are different types of pain relief - I don't know the details but have seen people refer to different types of opiod drug (of which morphine is just one). Not all of them affect people badly.
- doctors can usually give extra drugs to help cope with any side effects that the pain relief drugs might bring

I hope you can get some answers - push hard to make sure this is dealt with quickly - your mum's GP should step in to help, too. The Oncologist was right - pain can and should be managed.

Best wishes.
Jan

Hi Jan,

So sorry to hear you have lost your Dad to this disease or "Bastard disease" as my Mum calls it.

Thanks for your response it does help to know someone is out there & has experienced some aspects of what we are going through.

Mum saw her GP yesterday; he spent quite some time with her chatting & has liaised with the hospital as to what course of action to take. Mum has stopped taking the tablet form of Chemo for this week to see if this helps & the Oncologist says they will revise the dosage of this side of her treatment.

Mum was in good spirits last night when i saw her, Dad is kicking himself for not making her see her GP sooner & for not getting her to the hospital for treatment, we have all told him not to be daft, Mum included. He looks after her 24/7, we worry about him & try & get him to let us help but he is so stubborn. I know he runs out of words of comfort for her as do we all.

We have reminded Mum that the Oncologist said she should not have to suffer any undue pain & that in future we need to contact her GP or her support Nurse immediately. She was under the impression the pain was the drugs doing their work & she was attempting to live with it, us Brits & our stiff upper lips, sad thing is I would probably be same.

All the Hospital staff, Doctors & Nurses are fantastic but they can't help if we don't keep them informed, so lessons learnt & back to fighting this "Bastard disease".

Many thanks for your words of support they do help.

Yes it's a good idea to make sure your mum describes exactly what is going on to her GP. My dad used to love his GP visiting (she came twice a week) as he always could have a good chat to her about what was going on (he had various minor things that needed sorting). After he died, his GP said that his approach to this made her job so much easier because she could deal with everything that he needed treatment for and keep on top of things rather than fire fighting after the event.

I'm glad your mum is in good spirits. I hope your Dad bears up - sounds like you are keeping an eye on him, and don't forget that they will be entitled to Home Care help if they want/need it - takes a lot of stress of the carer to have somebody else pop in to do some things.

Take care
Jan