Stage 4 pancreatic cancer in my husband

Hi Sue. My husband got his prognosis last July. The shock is so terrible and you, I and others are in the same situation that no one else can imagine. My husband decided not to go through any treatment as he was told he had months without treatment or up to a year with, he’s not done bad but things are becoming more apparent he’s getting much more pain and feeling sickly. I feel upset and frustrated sometimes when he doesn’t take the advice of the palitive care team regarding medication to help with the pain. BUT  I’m not in his pain. He has secondary in lungs and outside lining of stomach.  He really struggles some days but so do I when I can see the pain. So sorry yours is losing weight and no appetite. Are you speaking to palitive nurse team, they have told me to talk to them anytime. They will support you too. Sending my best regards . And try to get out with friends, even if it’s a walk, a lunch. Let it out x

jac 

Hi Sue

I'm sorry you are both having such a difficult time. I just wanted to comment no eating. I really stressed about this for my husband and stressed him as well. Unfortunately, Not eating is one of the issues of this disease and now I look back I think that it probably did us no good whatsoever. If you can keep giving him ensure and make certain he is hydrated then perhaps that will stop him thinking you are 'nagging' and you will feel better too.

Squeaky

Thank you, I have come to that conclusion now the ensure, and soup he manages midday, isn't enough to maintain his weight.  He is small build but now below 8 stone.  And sleeping all the time unless visitors here.  Fortunately we both have good friends who offer help but really there isn't a lot someone can do.  He prefers home to going out, always a homebody, so our trips are all to the hospital.  I do walk most days and have  lunches with friends now and then but don't talk much about my feelings because tears are so near the surface all the time

I am so sorry you are going through this.. I have just lost my dad 37 days after diagnosis

I went through the same with my dad not eating, but it's not a choice, he said he physically couldn't, it's awful to see the fast deteriation but what i would say is try not to nag (hard i know i did it) & enjoy sitting & holding his hand, being with him, sharing memories because time is short & life is precious. 

Big hugs   xx

HI Sue, we are in the same position,  husband diagnosed with inoperable pancreatic which has spread to his liver.on the 19th January. So far we have not had any further contact from the hospital , waiting for the results of a pancreas biopsy taken some weeks ago. We have seen or spoken to our GP about 3 times ( different one each time i call ). Despite that a request was made by the  hospital on the notes passed to the GP asking that he be referred to the Palliative care team, this has still not happened despite promises being made that it has been passed on. The receptionist chose not to tell us if this had been done and referred me back to the GP who also was unable to say one way or another if it had been done.  His only concern during a telephone appointment was to constantly ask if we had a DNR form completed and in place ! I have rung round endlessly to try and contact the PC team  myself but the system is so confused I have got precisely nowhere..
The frustration of not being able to access any real practical assistance leads to an awful feeling of isolation.
He is suffering quite a lot of pain and becoming very very confused - hard to tell if from the medications or something else. I
Have others been left in this position  since diagnosis ?

That is so shocking re your GP is  there a local hospice you can speak to?  My local were brilliant and came out all the time when my husband returned home after being given weeks to live. Before he was given the news of just weeks, We had already had meetings with them and they were suggesting extra pain relief etc.

It does sound like a postcode lottery.  From diagnosis, in 2020, it took 6 months to get into chemo after a succession of mess ups between 2 hospitals. I'm so stressed now he is having a blood transfusion today for anaemia, another side effect.  Sorry I just be  positive now in spite of some good care

The long saga of getting help and information, we still await the referral to Palliative Care - on Monday his condition deteriorated so much and in so much pain called GP and was offered an afternoon telephone appointment. !. Scared because he was so distressed I called my neighbour an SRN with cancer treatment experience.. She too was worriied he was so unwell and after making a few phone calls we got him referred to the SRC unit - one day he has had a full medical assessment,, pain relief , scans to check if he had a chest infection. My call to see how he was ( no visiting on this ward) the nurse looking after him gave me a full rundown on his tests, treatments and had organised a ward visit from Palliative Care Nurse - in her words they are the experts when it comes to pain management. and on hearing i was still waiting a referral , made a phone call and I can expect a home visit with a day.= - she even apologised it couldnt be today -  this was to offer me some support .
What a difference in attitude.
Consultant Oncologist reiterated his condition is inoperable but has put in place various regimes to giver him back some  quality of life
I am assured he will be on a ward for a few days while they stabilize things then he can be discharged home
A month from hell and hopefully massive steps forward in just one day .  God bless the folk at the 'sharp end of the NHS' and of course my lovely neighbour who made it all happen.

Oh brilliant news that at long lady you are seeing some movement.  I found that the Palliative team at our local hospital were brilliant fir Rob plus they put my mind at rest as I was so worried. 

The only part of care I was furious about was being rejected twice by the Dietician team.  Rob wouldn’t eat and only drank Ribena but they wouldn’t see him even though the Palliative and Oncologist requested.

sending you a virtual hug, I am thinking about you

Thank you, just spoken to him and as they have moved him onto an Oncology ward I can visit today... whew !!!