Silent But Deadly

3 minute read time.

My father, age 65 was diagnosed with terminal metatstatic pancreas cancer following a CT scan in April 2009 after suffering with misdiagnosed conditions since February 2009 (it was thought he had an ulcer, gall stones, pylori...).  He visited his GP so many times and after reading the symptoms of pancreas cancer I find it hard to believe they didn't spot this.

He was dreadfully ill and I after being in and out of hospital with no real diagnosis I finally decided enough was enough and took him to A&E demanding they find out what it was before they sent him home.  It was then he was given the CT scan and the devastating news.

I was in the final 6 weeks of my first pregnancy and needless to say this was heartbreaking for me.   I was so looking forward to my baby but filled with sadness that my father was not going to be around to see her grow up.

We knew the prognisis is poor for this type of cancer and were disappointed that there was no surgery option but at the same time hopeful when he was able to have 3 courses of chemo.  He dealt with the chemo relatively well but after the 3rd round he became ill on and off resulting in him being unable to have further chemo leaving  a gap of around 8 weeks between his previous scan which had showed no change as though the chemo was working  to him having dreadful pain and feeling very poorly.  He went into hospital 2 weeks ago and whilst there had a further CT scan - this showed that he now has multiple tumours in his liver and we were told that there is no further treatment to slow the cancer growth and that the only treatments he can now are to ease his pain.  The doctors cannot give a definite "how long" but they advised that he could have several months or weeks depending on how fast his symptoms worsen, at this point we do not know whether or not he will see Christmas.

Words cannot describe the pain I feel to be living this nightmare.  I am so in love with my little girl but it breaks my heart everytime my dad looks at her as I know he is devastated that he won't be here to see her growing up.  My mum and dad mean the world to me and I just can't imagine him not being here and I worry so much how my mum will cope without him and also nursing him through his final days.  They have been together for 45 years and were just looking forward to their retirement.  My father has undergone 3 operations in the last 3 years having 2 new hips and a heart valve replacement which was only in January this year - how pointless all that pain seems now when he had this demon silently growing inside him.

It all seems so unfair, my father has never smoked, hardly ever drinks and is not overweight - where on earth did this come from?

It is so hard because whilst I want him to stay with us as long as possible I also don't want him to have to suffer and want to fast forward through the pain of knowing we are losing him over and over again each time he has a bad day.

As it stands he is going in hospital tomorrow for a spinal block procedure to see if this can relieve his pain so fingers crossed this works and he can at least get some relief.  Maybe then he will feel more up to fighting and I pray that he can at least be here for my daughter's 1st Christmas.

My heart goes out to every family battling this dreadful disease X

Anonymous
  • FormerMember
    FormerMember

    My dear Dad passed away Sunday morning with his family by his side.  

    I wish you peace, hugs and love as you continue the journey with this dreadful disease.

    Carolyn xx

  • FormerMember
    FormerMember

    Carolyn, I am so sorry I have only just  seen your message as I have not logged on for a few weeks as we have been so busy with dad.

    I am so sad to hear about your dear dad and my thoughts are with you and your family and I hope you are all coping ok.  Even though you know it is coming somehow it is still a shock.  At least now your dad has no more pain and I am sure he will be looking down on you always.

    Your words about your dad being comfortable in his own bed and loved struck a cord as my dad feels the same - he wants to stay home with his family around him rather than go to a hospice and of course we are happy to oblige him.

    The spinal block, when he finally had it, was a waste of time and quite a lot of pain during the procedure. It has not improved his pain at all and he is now having intraveneous drugs administered by a nurse everyday.  

    He is looking very frail and sleeping a lot, his breathing is very laboured now too and I am worried that he is fading fast.  I spent today with him whilst my mum had a break and I can honestly say I feel as you did that I can't bear to see him like this and want him to be free of pain and suffering.

    I cry most days but feel I am gradually accepting he will soon be gone and hard as it is but for his sake I hope he will not suffer too long.

    Love and hugs to you and your family, Jo xxx

  • FormerMember
    FormerMember

    Thanks for your kind comments Jo. We held Dad's funeral on Monday and there was over 200 in church, just shows how much my Dad was respected by all those that knew him, I never knew how many lives he touched, it helped us all get through a very tough day.  I do feel quite calm at the moment, I sometimes feel that I've been grieving for Dad since July and maybe that it is quite normal to feel like this now.  Mum is in a lost world at the moment, how can you wipe out 53 years and not feel the way she does, she is however continuing to see a Macmillan counsellor once a week, and had been leading up to Dad's death which I do feel is helping her tremendously,  if you think it will help you or your mum to talk to someone speak to your macmillan nurse who can organise this for you.

    Everything you write takes me back to our time caring for Dad, all I can say Jo is that you all need to stay strong, things got extremely difficult for us during Dad's final days, get all the help you can from your district nurses who will organise hospice help at home, don't ever think you cannot pick up the phone, our district nurses were wonderful even when we had to call them in the middle of the night several times to adjust Dad's medication it was never too much trouble for them to come out.  

    Be strong Jo, you will find the strength from somewhere to get through this.

    I feel my Dad around me all the time and take great comfort from that.

    Keep posting when you can and I will keep checking your posts and if you want to ask me anything or just have a rant then I'm here, you are not travelling this dreadful journey alone.

    My thoughts and prayers are with you all. Carolyn xxx

  • FormerMember
    FormerMember

    Hi Carolyn, just to let you know that sadly dad did not make it to Christmas and passed away on 18th November ironically in the middle of pancreas cancer awareness week.  It was a terrible stressful end and I hope I never have to see someone else go through the suffering he did.  They were unable to get the medication right somehow so he was very restless and agitated and even in his weak state kept trying to get out of bed. When I asked him one night where he thought he was going to go he said "dead" - I said well you can't walk there dad and he said "well how do you do it then?" we had to laugh despite ourselves as he did come out with quite a few funny things with the high dose of drugs.  The nurses described him as a 'challenge' as he apparently had enough drugs in him to knock out a horse and should have been theoretically comatose but he was fighting all the way to the end he even let out an almighty shout when he died as if in protest that he was being taken which was very hard on my mum as she was with him.  I'm really not sure how I feel just now, I was quite calm at the time and resigned to what had happened but over Christmas have found myself feeling so angry and sad at the silliest times - such small things set me off.  My little girl has saved me and my mum and without her I'm sure we would not be coping at all.  Mum has stayed with us most of the time since dad died but has gone home the last few days and she is finding it very hard being alone but at least she still has her lovely dog for company.  As much as I can I am trying not to think too much and living a day at a time and hopefully we have been through the worst and it will get easier.  Well I guess I should get off to bed now as no doubt my little one will be waking me up in the small hours.  I hope you have got through Christmas ok and I wish you and your family all the very best for 2010. Jo xxx

  • FormerMember
    FormerMember

    Hi Jo

    I'm so pleased that you have replied I have often checked to see if you have left a message as you were on my mind an awful lot.  I am so sorry to hear that your Dad passed away in November, one month to the day that I lost mine.  Reading your blog your Dad's last few days sounded the same as mine.  Even though Dad didn't die until the Sunday morning I felt that we had lost him on the Thursday as he was so heavily medicated that I knew the man that was my Dad had gone.  Like your Dad he kept trying to get out of bed even though he should never have had the strength to be able to do so, we also had some interesting conversations about dreams he had had, they were very amusing! He again was so agitated and restful, they just did not seem to be able to settle him.  The only time he was not agitated was about 5 minutes before he died and then it was all over.  Like you I hope never to see anyone go through what my dear Dad went through those last few days of his life. For us as a family to have to see and deal with some of Dad's symptoms was awful, we were certainly not told of some of the awful things that could happen and we were often alone having to deal with things whilst waiting for a hospice nurse to come to the house and help. After Dad died I went to see him in the chapel of rest, something I was unsure about doing but he looked lovely, all smart in the suit he wore for my parents golden wedding and looking so totally free, it helped me a great deal.

    My Mum, sister and I had a good Christmas, my mum stayed with us for most of the time and has been at my sisters for new year.  Like you my children have helped us so much get through it, after all they need us to be strong and carry on.  The only really sad time I had was when I laid my Christmas table and looked at it all lovely and waiting for the family to be sat round it and there was one place missing, it broke my heart, but then I thought about Dad and I knew he was there with us, and he would have been so proud of us all, especially Mum.  

    I have been putting the Christmas things away today, spent a lot of it crying I think its probably because I tried so hard not too at Christmas, probably just a good time to let it go. I miss him more and more each day, I never thought it was possible to miss someone so much.  People tell me it will get easier, I'm not sure about that one, I think we just learn to cope and live with it easier as time goes by. I don't think we ever get over losing someone we love.

    I hope 2010 brings you a more peaceful year, have lots of fun days with your little one and your Mum, smile through your tears, your Dad would be very proud of you all.  Carolyn xx