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Oncology 24.1

In what seems to be a long time since my last post, a lot of water has passed under a very small bridge. I came home on leave with the PTC drain in and went back to hospital so that I could have the stent inserted under a general anaesthetic. This procedure happened the day after I was readmitted and it turned out to be the most painful day of my life. What should have been a 45-60 minute procedure ended up being 3.5 hours long. When I woke up from the general anaesthetic I was in agony. I was in so much pain, I don’t even know how to describe it. The post anaesthetic care team did their best to give me analgesia sufficient to control my pain and they were unable to do this. Over the course of a day, I had 3 x 10mL boluses of Ketamine as well as going through > 2500mcg of Fentanyl. It was established that I needed an epidural but they also needed to establish that there was no other cause for this new pain so it was decided that I would have a CT scan to rule out complications. Fortunately there were no new or concerning features on CT. So I returned to the post-operative care unit and an epidural was placed. My experiences of ketamine boluses were also terrible; its auditory and sensory hallucinatory effects made me feel really trippy and I would not wish that sensation on anyone. Tuesday officially went down as the most painful day of my life. The following two days not much changed with my regimen for pain relief and a trial stop of the epidural occurred on Friday. Unfortunately that too was unsuccessful.

On Friday, Hannah and I, together with the palliative care and oncology teams, had some long and hard conversations around when would be appropriate to stop aggressively pursuing quantity of life.  We agreed that whilst I would still happily be treated for small things, we were not going to pursue treatment that would forsake quality of life. My oncologist was of the opinion it was unrealistic to go back on chemotherapy as it was evident the cancer had stopped responding before the period of non-treatment and my overall fitness and health had deteriorated so rapidly over such a short period of time. Based on this we came to the decision that I am now for palliative care only. From now on, our decisions will be based on things that influence my quality rather than quantity of life. How short or long that is is anyone’s guess. My priority is to get home if I possibly can as that is where I want to be.

Going on in the background of all of this has been ongoing fevers that we have yet to identify a source for but whose guilt most likely lies in biliary sepsis. In order for me to get home, the first hurdle is to treat this successfully.

We always knew it would come to this at some stage, but perhaps not so soon. For some reason it always seemed to be a few months down the track. For whatever reason I have managed to outlive anyone’s predictions for the past five years. But now the chickens seem to have come home to roost.

I intend to keep blogging through this process as I document the journey to death and I hope and pray that it gives Elise something to read so that she can get a glimpse of who her father was.

Until next time…

Categories: Blog, Cancer Update Tags: , , ,
  1. Richelle
    August 4, 2014 at 12:51 pm

    Praying for you all as you enter this next phase of your journey home.

  2. August 4, 2014 at 12:55 pm

    You’re one of the bravest individual’s – I’m inspired by you and saddened, you have bared your soul to those of us who have engaged with your blog, I have never met you but I pray as you enter into the next phase that you and your family be at peace – may the pain gradually let go as you wait upon his strength. You’re amazing and I suspect your daughter will also grow into an inspirational and strong woman who will impact this world and follow in your footsteps.

    • MM
      August 6, 2014 at 6:19 am

      So perfectly written and just what I was (and I’m sure many others are thinking & feeling). Jared & Elise–you are both such an inspiration!

  3. Lois
    August 4, 2014 at 1:11 pm

    May you find peace like a river, dear soul.

  4. Greg
    August 4, 2014 at 1:59 pm

    Jared keep your head up high in spite of what is going on you have excellenty so far. We are all praying hard. Take care

  5. jaime
    August 4, 2014 at 1:59 pm

    Oh jared, hannah and elise, my heart is heavy as i write this. What a battle you have and are still fighting. My greatest prayer is that this next stage is one filled with peace and beautiful time with your family. Thinking and praying for you all, always. God bless.

  6. Dyana Parore-Connell
    August 4, 2014 at 2:11 pm

    Jared sorry to read of the rough journey you are now going through. Hope you find comfort and peace whilst be looking after by the pallative team. My heart goes out to you and Hannah.. God bless. (You are one inspirational man)

  7. August 4, 2014 at 2:16 pm

    I trust that you will have the quality of life you want, and certainly deserve, from now on. My thoughts are with you all.

  8. Jenny Beekmans
    August 4, 2014 at 2:47 pm

    Wow Jared how brave you and Hannah are! guess you always knew this time would come but stll very hard to deal with. Our thoughts are with you and your strength and candidness will be great inspiration for many others. I hope you get home very very soon and can be relatively painfree to enjoy your last days with your family.
    take care and take heart from the support of all your followers.

  9. Jan
    August 4, 2014 at 3:06 pm

    Dear Jared, You are an amazing man, every blog I read makes me want to scream ‘this is so unfair” I will take through my life, all I have learnt from you, the courage to face what ever comes along with the bravery and strength that you have taught us all. God Bless you, you Beautiful man

    • Theresa
      August 4, 2014 at 7:24 pm

      Well said Jan, I can say no more, than, I look forward to every pearl of wisdom you can share with us, as you will help us all as we too one day face the end of this earthly journey.
      For all the support and rest your body and soul needs, and for Hannah and Elise and your families, strength too, this I pray. Amen.

  10. Lucy Hazelwood
    August 4, 2014 at 4:33 pm

    Jared you inspire so many, I am at a loss for words, much love to you and your lovely family. Praying for you, for adequate pain control and that you can go home

  11. Jo
    August 4, 2014 at 8:24 pm

    Thinking of you and your family! Xox

  12. Brigitte Murdoch
    August 4, 2014 at 8:27 pm

    Yes, praying for you to be able to go home to Hannah and Elise. xo
    An inspiration to all you have been in contact with I am sure.

  13. August 4, 2014 at 8:58 pm

    I wish you and your family always carry peace within, a kind of peace that rises over pain and grief. My thought is with you and your family.

  14. Shelley brady
    August 4, 2014 at 9:47 pm

    I have followed your journey and admire your strength and love for your family and the intimacy you have shared with us all through your journey. My siblings and I along with our Mum nursed my dad at home through his palliative time on his journey, it was a special time for us all. I hope you too get to spend your quality time with family and loved ones, my heart and soul are with you and your family. Thank you for openly and honestly sharing with us.

  15. Amanda
    August 4, 2014 at 10:16 pm

    Words can’t express the sadness I feel for you and your family. I hope you know how brave you have been to speak so honestly about your illness, when I’m sure you just wanted to run away and hide. One thing you can be certain of is that your daughter is SO lucky to have a role model like you. My heart breaks that it couldn’t be for a lot longer.
    I hope the times ahead are special with you and your family, and your pain eases. And I wish you strength for the times ahead.
    Thank you for being such an inspiration to many.

  16. Maggie
    August 4, 2014 at 11:19 pm

    Hi jarred , your blogs I find very interesting and you are amazing to keep us so well informed with so much pain etc, take plenty of pics along the way with your lovely family, I met you before on ward 78 when you used work there and i was a nurse there , x

  17. Liz Marriott
    August 4, 2014 at 11:22 pm

    Jared, Hannah & Elise, may God continue 2provide you with strength & heap his blessings & peace on you all, as you journey this together. Our hearts & prayers are with you – as always.
    Liz, Aaron, Kobe & Elijah xxxxxooooo

  18. Claire
    August 4, 2014 at 11:35 pm

    Dear Jared, so much has already been expressed here that I want to say. I am another who has never met you, but may I just add my heartfelt thanks to you for being such an inspiring example of one who has chosen to “walk in the light … and in the way of love” (Ephesians 5) – as we have been challenged to do. You have shared your talents and gifts wisely and generously. You have our immense admiration and respect – we can only but try to follow your example with humility. You and your beautiful family are never far from our thoughts and we pray for you all.

  19. Janice Roseingrave
    August 4, 2014 at 11:38 pm

    Thinking of you all at this time. I know that you will make the right decisions. Take care. Janice.

  20. Rach
    August 5, 2014 at 1:06 am

    Much love to you , Hannah and Elise Jared , my heart is heavy tonight reading this and you will be in my thoughts through this part of your journey as you have been with the rest. Such strength and love you have shown and may you find much more in reading all the love NZ has for you and your courageous journey xo

  21. Sue
    August 5, 2014 at 6:35 am

    Dear Dr.Jared, There must be thousands of us who`ve rooted for you silently in the background and not having commented before. We are still here and I hope knowing this gives you and your little family a boost of security….we`re all over the world for you. Here`s South London, England!
    BTW Don`t feel obligated to update the blog if your tiny daughter wants loads of cuddles.

  22. Ctz
    August 5, 2014 at 7:01 am

    Dear Jared-thank you for for your beautiful spirit. Constant grace and comfort and God’s arms around you and your family during this time. Your powerful legacy will live in in your beautiful daughter – so grateful that you became her dad. Carol

  23. Dee Karena
    August 5, 2014 at 11:00 am

    Jared, My heart is aching as you and Hannah have reached the stage now where you have decided on where you go from now. It takes much strength and love to do that and I’m applauding you with tears streaming down my face. Please know that these blogs, whilst initially uplifting, informative and at times humorous, have been enlightening for me reading about your journey from the perspective of a patient as well as a person with medical experience. Thank you for sharing your life, your wife and your daughter with us Jared. Sending you much aroha to you and yours. Dee

  24. kath
    August 5, 2014 at 1:21 pm

    What an incredibly brave man you are. We will continue to pray for you and your family and trust that you will be able to go home to them and have some pain-free and special time. Thank you for your amazing honesty and courage throughout your battle

  25. August 5, 2014 at 4:31 pm

    Frankly Jared what I know I should say is “May God bless you as your faith and courage has been and continues to be amazing” What I feel like saying is “Bugger”. You’ve given death a real run for his money but all the prayers and all the hope and all the love have not been able to affect a change in the path of this disease- as sometimes happens. So my disappointment for you and your family is immense but my faith in the ultimate safe and loving, caring arms of God remains strong. May you find peace, rest and some relief from the pain in the time you have left and may Christ in you be the hope that lights your way into the dark.

  26. Boatie
    August 5, 2014 at 9:04 pm

    I have no words. I am sure you know you are and will forever be in the safest of hands xxx

  27. Alan Torrance
    August 5, 2014 at 9:25 pm

    Desperately sad to read this! You are and have been the most stunningly impressive and courageous witness and, indeed, example. Your little girl has SO much to read that will make her hugely proud of her Dad. I shall be praying for you all… Alan

  28. August 6, 2014 at 12:12 pm

    Hi Jared, I’ve been following your journey from afar. I’m so sorry you have reached this point. You may remember that I shared the alternative cancer treatment I took for my colon cancer and the lesion that showed up in my liver after my chemo was completed in 2009. At the time I contacted you the lesion was just starting to get smaller. But my last MRI was clean in March 2014 and the last time it was seen on MRI was March 2011. Please reconsider alternative treatments now that you’ve exhausted your options with traditional medicine. My story can be found at http://www.worked4me.wordpress.com My thoughts and prayers are with you and your family.

  29. Maree
    August 6, 2014 at 2:05 pm

    Hi Jared, Hannah and Elise, I’m so very sorry to hear this news and especially to know you have been in so much pain. I pray that the team will be able to find the right medication combination to control this pain and the fevers as well so that you can go home. We are praying for you at home-group and will continue to do so you are not alone in this – you have a lot of people who love you and are praying for you. May you all we aware of God’s presence with you and His strength sustaining you. Thinking of you, much love, Maree xx

  30. August 6, 2014 at 11:30 pm

    For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God himself and not by human hands. We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. For we will put on heavenly bodies; we will not be spirits without bodies. While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit. – 2 Corinthians 5, 1-5.

    Jared, I’ve admired your matter-of-factness for a long time and your acceptance of what will eventually be. You really have inspired and given courage to countless others, many of whom you have never even met.

    A lifetime seems so long (and yet, not long enough), but in comparison to eternity, it is nothing, and there is so much joy to come that will swallow up the present pain and grief.

    I’m definitely a firm believer in quality of life over quantity of life, and I’ll be praying that your quality of life at this time is superb.


  31. Wendy
    August 9, 2014 at 4:23 pm

    Hi jared, I’ve been following your blog since I heard you speak on rhema. I wondered how a Christian navigates this difficult journey and you have shown me. I love how your intellect and faith are woven together, your thoughts are insightful, wise and trusting. Thank you for sharing your journey so others could dig deeper in their faith and relationship with god. I pray like many for your comfort, rest and deep sense of god’s presence and special moments with those you love. Bless you Wendy

  32. Sandra
    August 26, 2014 at 2:05 pm

    Sorry to hear things have progressed so quickly, my husband and I went through the same complications and journey last year. Putting a drain in was really painful for him too, three times they tried for stents. All the best to you both, tough times ahead, but you sound like you have the same sense of humour and determination we did. That makes all the difference. Braveness, laughter, family.

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