BEGINNING OF JOURNEY TO END OF LIFE CARE

Hello everyone.  I hope you all don't mind but I just need to vent my feelings tonight.  I just need to tell our story and get some understanding of this vile cancer which robs you of a loved one so quickly. 

At Easter whilst my husband and I were in Tenerife, he complained of pain in his leg and thought he had pulled a muscle.  It continued over the weekend and I told him to go to the doctor on the Monday.  He was diagnosed with a DVT.  He was given blood thinning injections and we were allowed to return home on the 8th May on the understanding he saw his GP immediately.  We saw the GP the day after our return and he had some bloods taken.  These showed a problem with his liver function.  He was sent to our local hospital for an ultrasound and he was then referred to another local hospital for a CT scan.  After a long wait, he was told at the end of the day that there were lesions on his liver.  He returned for biopsies three days later and within a week we were sitting in front of the Oncologist who informed him he had pancreatic cancer which had spread to his liver and that there was nothing that could be done but offer a course of chemotherapy to hopefully buy him some time. That was two weeks ago yesterday.  He was due to have a PICC line done on Monday and start chemo yesterday.

Gradually it has become more and more difficult to get him to eat and drink.  On Sunday I found it difficult to raise him and we called the out of hours doctor to him.  By Monday this week he was terribly ill and we took him to the Oncology department who assessed him and he was admitted to the AMU where he was put on a drip, had bloods taken again.  We were told he had an infection, his liver function was not good and that his calcium levels were very high.  Eventually the infection was shown to be pneumonia. 

Lastnight he was moved from AMU to the Respiratory ward.  Today we have been told that Oncology have now decided not to give him any chemo. To be honest, he would not be strong enough.  We have been told that his pneumonia will be treated with antibiotics and that the Palliative Care Team will now be sorting out his End of Life care for when he is discharged.  For the first time today we discussed DNR.  Because of his illness he is confused and it has been so difficult making him understand.  The man lying in that bed today is not my husband.  This horrible disease has stolen him from me before I was ready to let him go.

Because everything has happened at breakneck speed I am not ready.  His children, their partners, his grandchildren are not ready and now we are facing his loss. 

Please excuse my letting it all out, but I just need to speak to people out there who know what I am suffering and to know I am not alone.  I have my children and they are wonderful but they are suffering too and I don't want to burden them any more.

Thank you.

  • Hello , I’m so sorry to read your post, and felt you are very much in need of a gentle virtual (((hug))) or hand squeeze.

    I read you are not ready to let him him go and you wanted to speak to people who know what you are going through. I wanted to welcome you to the community and I was thinking that the group supporting someone with incurable cancer might have the support that you are seeking from others going through similar circumstances, albeit all sorts of cancers. I’ve put a link in for you to click on and have a browse. 

    https://community.macmillan.org.uk/cancer_experiences/nearing_the_end/discussions

    A copy and paste of your post will be less painful than rewriting it out again, but I think will bring you good support there in addition to this group for patients and carers. 

    Take care KT

  • Thank you KTatHome. You are very kind. I am at a total loss tonight. But your kind reply has helped. 

    Super_mum66
  • Hello super mum

    I really feel for you and your husband, it’s so awful.   You aren’t alone, I have found comfort & strength from the incredible people within these pages as I’m sure you will. 

     I’m sitting here listening and waiting to my mum as she continues her fight. 

    Keep strong

    Welshpuffin

  • Dear super_mum66

    I absolutely feel for you and your pain. The speed of this illness and it's varied paths to taking our loved ones; especially its speed and stealth. I'm hoping you'll fingers some comfort in knowing you're not alone and that people here absolutely "get it", understand in that kindred spirit way...

    I sit here holding back tears as I check my dad's breathing - and quietly encourage him to cough and breathe - he, my darling, disappeared from view in the early hours of yesterday,  and despite having had 9 weeks from diagnosis and 12 weeks in all, of him being ill, I wasn't ready for him to leave me before his physical self left. We've known from May 3rd that it was symptom control only and no hospital interventions once Dad's stent was put in - for his jaundice - his explicit wishes. So he has pneumonia now and is on a sub-cut syringe driver to alleviate his secretions and to ease his agitation... and we talking lovingly and reassuringly from time to time.

    I had thought I was prepared - after all, I've had 9 weeks - but I was still virtually physically felled by the realisation that the focus had just gone from helping him to live as well as he could, to the actual reality, the actual need now for him to pass - without any more suffering, not having to endure any more... to pushing down my own desperation.

    I wish you strength and the comfort of having loved, and having been loved to the very end of your husband's having been with you. 

    Love is at the core of all this. My love for the man who whirled me round and round in Southport's open-air baths; I was his water-baby and just like him,
  • Hello Super Mum

    I am sorry to hear your news. All cancers are horrid but pancreatic cancer is particularly vile as it often shows up too late for anything to be done. All of us get what you are going through and people here are very supportive. My experience was just to plan for the day ahead and to take each day as it comes.

    We are all here to support each other.

    Squeaky

  • Hello, please don't apologise for sharing your worries and feelings- we all understand and empathise. Its bloody horrible, its hard to describe.

    My Dad has terminal PC and is now on a steady downhill (albeit v slow) slope, which is painful to watch. Its like a continual torture. Its hard as i'm an hour away and have three young children, so see him sporadically. Mum is struggling but putting on a brave face.

    Its hard to think of other things, as I'm all too aware that time is short and he has minimal support from the palliative team. His BP has dropped, he hardly eats and is lethargic. Yet, when he feels he can, he does manage local trips out. One thing is for sure, he's stubborn!!

    The watching on is the worst. Waiting and wondering. All you can do, is what you are no doubt doing already. Being there and supporting him. Please know that we are here for you, I hope everything is being done by the palliative team and that you yourself have good support. It greatly impacts the family. 

    Sending love and hugs to you, keep strong xx

  • Hi Onelove3

    Good to hear that your dad is having some better days.

    BTW did you notice this thread is actually from three years ago.

    Squeaky