Pain management hell/dealing with anticipatory grief

Hi everyone,

First of all, I'm so thankful that a space like this exists for cancer support as it honestly is the most horrific and ruthless disease, and quite frankly it can do one. 
My dad was diagnosed with cancer of the biliary tract (has anyone else had experience in this type of cancer?) back in March and since then there has been a catalogue of problems. He was undergoing chemo and a few months ago he developed a pain in his side which turned out to be pain in the liver where the cancer tumour itself had caused a blockage. My dad has always been so energetic and has the biggest thirst for life despite any obstacle. You'd never hear him ever complain about being uncomfortable or unhappy and would always put others before himself, and more than anything he hated anyone fussing or worrying over him. This pain got so bad that he spent most of his day curled up in bed, not even having the strength to spend time with his kids and grandkids when we visited. 
Two weeks ago, I rushed him to A&E as he noticed blood clots in his urine and I spent 3 days by his side, and I tell you I HAVE NEVER SEEN ANYONE EXPERIENCE SUCH CONSTANT AGONISING PAIN IN ALL MY LIFE. It was enough to reduce this adult man to tears, calling out to god and his mother to please stop the pain. This has been so difficult for me to cope with, as I have been the one by his side throughout his stay in hospital. It turns out he had a hole in his bladder (due to bladder cancer treatment 10 years ago) so they took him into surgery twice in one day to mend. The surgery itself was high risk so we had to prepare for him to not come out and said our final goodbyes in case he didn't. Thankfully, he did come out but days later the hole had reopened and he was rushed back into surgery. He is now recovering in ICU and remains in constant agonising pain. We've been told the cancer is not curable and he is under the palliative care team so our goal is now to at least just relieve his pain so he has some quality of life.

Hes been reviewed numerous times by the palliative/pain management team who prescribed morphine but this has no effect at all. They upped the dosage but still no pain relief, and even paracetamol doesn't touch the sides anymore. Does anyone have any experience to share in relation to pain relief options? And also just generally coping with seeing a parent constantly in pain and feeling so helpless and grief stricken? I feel like I'm on robo-mode and not really processing anything. Everything feels so numb. I don't want to talk to any of my friends or family as it just makes me angry and resentful that they don't understand, even though I know they mean well and just want to be there. Cancer is the most horrendous thing and I wouldn't wish this kind of pain on my worst enemy! 
 

Thank you for reading and love to you all, hoping you're all winning those battles. 

  • Hi Nillyvanilli

    im so sorry you are going through this awful experience, you are doing a fantastic job looking after your dad. 
    my dad had aggressive lung cancer and I relate to the anticipatory grief, the fear and helplessness. At first my dad didn't want to take any pain meds but gradually had to take oromorph, then morphine patches at increasing doses and eventually a morphine driver. 
    from my experience i can only suggest you keep asking for help from the palliative team and other health professionals involved, be persistent if necessary. 
    sending you hugs and prayers for strength 

    Astoria x