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Palliative Care 1.0

Getting sick is a lot like riding a train into a dark tunnel. Its dark and a bit (or maybe a lot) miserable when you first ride into it, but in the distance is a light. That light is what you are targeting, it is what represents coming out the other end, getting better.

When you are palliative, there is no light in the tunnel. You go into the tunnel, become enveloped by darkness, but don’t have anywhere to go, no light so to speak. Each day is a progressive deterioration on the day previous, there is no hope that I’m going to get better. The focus is instead keeping me as comfortable as possible.

Its a bit of major mind shift, because every other time I have been sick, there has been a light. Sometimes dim… but still a light.

Since I last posted I managed to get discharged from hospital into hospice care, with the goal to move from there to home in the longer term, which after two weeks, I also managed to achieve.

One the outstanding issues that was preventing me from moving to hospice in my last post was my ongoing biliary sepsis. With unclamping the PTC tube and antibiotics I have managed to recover from that.

The focus in the hospice was getting myself into a manageable space where pain etc could be managed from home, which I now too have achieved. With so much water having passed under the bridge, I apologise for the lateness of this blog post. I now find myself at home spending my last days with my family, which has been great after close to 7 weeks in hospital and hospice care. I now have my family around me all the time, so they aren’t ‘scheduled’ visits, and it is much nicer to be in a familiar environment.

As alluded to at the beginning of the post, being palliative is quite the change in outlook and mindset. What it essentially boils down to is that I am now waiting to die.

I don’t necessarily want to delay that for as long as possible, I’m not sure what I want to be honest. I’m helpless at the moment. Death will come to me as quick or as slow it decides on it’s own terms.

I know I’m not eating enough to sustain life and that will catch up with me eventually…
I know i’m keeping up with my fluids…
I know that my body is disappearing in front of my eyes, slowing deteriorating bit by bit each day…
I know that death creeps around the corner waiting to pounce.
I know that all of this is beyond my making. Maybe death will pounce next week, maybe in 5 weeks time. He/she will choose their own time.

In the mean time I will enjoy what family time I have, I will catch up and see friends old and recent. I will enjoy what time I have left for whatever blessed time it is that I have it for.

For those following this journey, short or long, I don’t know how much of it there will be left. I will try to update when I can, but the reality of it is that as I deteriorate, it will be harder to do so. I am already on a lot of drugs that dull the mind, it can make writing harder, and make concentration harder still. I want you all to know that I am not unhappy, but content. I am taking each day as it comes, absorbing what it has to bring me and trying to make the most of while I can. This is not to say there aren’t hard days. Hannah and I have had our fair share of shedding tears as our reality comes to home to bite, but that is normal. Who wouldn’t cry when death is just around the corner, but, on the whole we are both at peace, preparing ourselves for what the next chapter will bring.

I am not afraid of death, maybe partly anxious about it’s mechanism, but I have a faith that reassures me however it happens, I will be going to a better place, one where death and suffering will left behind and the resurrection of Christ will become the most apparent it has ever been to me.

Until next time….

Categories: Blog, Cancer Update
  1. Sharon Sharp
    August 30, 2014 at 9:53 pm

    God Bless you Jared you are truly an inspiration.

  2. August 30, 2014 at 10:01 pm

    Enduring proud to know you and for what you have accomplished in bringing humanity and understanding, as well as a deeply faithful pragmatism to this journey for so many. Thoughts and prayers are with you and your family for these days (weeks) .. Hopeful that our conversations have helped the process of capturing your memories and thoughts for Hannah and Elise. Much love x

  3. August 30, 2014 at 10:05 pm

    There are no words. You have and will be in our thoughts and prayers every day. Thank you for sharing your journey, for saving so many lives, for being such an inspiration. There IS a light at the end of the tunnel, just a different one, and I wish you peace on your journey towards it. xxx

  4. August 30, 2014 at 10:05 pm

    Thank you Jared and Hannah for being prepared to share your journey with us. Our prayers are with you all as you face this next stage together as a family. Your blog is an inspiration for us all to read. Every moment you all have together now is very precious. Again thank you and until we all meet again in our Heavenly home.

  5. Louise Reynolds
    August 30, 2014 at 10:07 pm

    Dear Jared
    Thoughts and prayers are with you and Hannah and all your family. Sadness fills our hearts. We are grateful for you, our memories of you, and that you have been so generous in sharing your journey.
    Wish we could somehow put that light on at the end of the tunnel. Grateful that Jesus will welcome you into eternity in His time. Wish it wasn’t for another 50 years.
    Love and hugs,
    Louise and Lyall xoxo

  6. August 30, 2014 at 10:15 pm

    Thanks Jared for sharing. Looking at what is going down on this planet we all have to hope for a better eternity. I hope to see you there.

  7. Nicole
    August 30, 2014 at 10:21 pm

    Dear Jared, it is so wonderful to get your blog and news tonight. You’ve been on my heart and in my prayers increasingly as the days have passed not hearing from you, which is completely understandable. Thank you so much for being so generous, sharing this journey with us all, particularly now as it has entered a new phase and is so much more difficult for you to write and communicate; you are amazing. May God continue to give you great contentment of a life lived so well, and may the certainty of Christ’s resurrection continue to comfort you and give you, Hannah and Elise the guarantee of hope of everlasting life. It’s times like this that the gospel of Jesus shines the brightest :-). I thank you so much for all you’ve shared and will continue to keep praying for you and your family. Today I was reading John 11:17-43. Vs 25 is the kicker, cling to that promise 🙂

  8. Lisa
    August 30, 2014 at 10:22 pm

    I wish you and your family strength to cope with what is to come while itis hard to think of leaving them you will always be in their hearts and thoughts. God bless you and you beautiful family

  9. Chany
    August 30, 2014 at 10:28 pm

    Hi Jared,
    You and your family are in our thought everyday, thank you for the update. Reading your blog remind me everything about my late brother who passed away early last year at the age of 32 with the same cancer you have. I remember on his very last few days he was telling us and the Hospice lady that ‘everyday when I get up and I see the sun I know I have another day’ He had been always known as brave but he was brave until the end. He was simply my heroes. And now I found another heroes and that is you JARED.

  10. Soph
    August 30, 2014 at 10:30 pm

    Dear Jared

    I don’t expect you to read this comment, but I feel like I need to say this anyway.

    Thank you for sharing your blog with us all. I’m seventeen, and when I was thirteen years old, my dad passed away from bowel cancer. Like you, he ran a blog, writing about his faith, his health, and (embarrassingly for me at the time) his family. I didn’t read the posts when he first wrote them, but four years later I find myself going back to that blog and loving my dad more and more for the things I didn’t have time to learn about him.

    In a strange way, your blog has been a blessing to me. I thought it would be too excruciating to read the developments in your life – in a way, to relive what I have already been a spectator of in my own life. But it isn’t. The fact that you are writing this down, for us and for your daughter when she is old enough to read this, is a huge gift.

    I know that you want her to learn about the person you are, even when she won’t get the chance to find out in the more… conventional way. I’m sorry. There is no amount of words I, or anyone, can write, to make the pain lesser. But it is so important to use the words anyway. That is what I have learnt from my dad, and now from you. Thank you for allowing us, tangentially, into your life.

    I’ll see you sometime, in some spectacular place. Thank you.

    • MrsMcG
      August 31, 2014 at 12:20 am

      What a beautifully written message, Soph x

  11. Tracey Bradley
    August 30, 2014 at 10:33 pm

    Thanks for sharing your blog which I have followed since seeing you on good morning. I have prayed for you constantly really believing that you would be healed. You truly are an inspiration to so many, your never failing faith is such an encouragement .
    Thoughts and prayers are with you and all your family, sad to read the time is near but happy to know that you are at peace knowing you are going to a better place.

  12. Cathy Cooper
    August 30, 2014 at 11:08 pm

    Thank you for the update Jared, Love and prayers to you and your family x

  13. jane
    August 30, 2014 at 11:11 pm

    Thanks so much for your blog updates Jared. For those of us who have never met you, yet who have followed your open and honest updates, it feels like you have warmly invited us / allowed us to somehow walk this journey beside you. Thank you for that privilege. You have been an inspiration and an encouragement to so many people – and will continue to be. My thoughts and prayers are once again for you, Hannah, Elise and your extended family. May you know HIS love and peace in even greater measure as you await ‘your promotion to glory’.

  14. Steph Pettigrew
    August 30, 2014 at 11:21 pm

    Thank you Jared for sharing this journey with us all. You have been a blessing and an inspiration to many.
    May the grace of the Lord Jesus Christ, and the love of God, and the fellowship of the Holy Spirit be with you and all who you love this day and forevermore.

  15. Jan Paterson
    August 30, 2014 at 11:39 pm

    You are truly an inspiration. May you know the warmth of his loving arms. May God’s peace continue to be with you, Hannah and little Elise. xxx

  16. Pauline
    August 30, 2014 at 11:47 pm

    God be your comfort, your strength;
    God be your hope and support;
    God be your light and your way;
    and the blessing of God,
    Creator, Redeemer and Giver of life,
    remain with you, Hannah and Elise now and for ever.

    Hope you don’t mind me posting this to you Jared but it came to me as I was reading your blog just now.

  17. August 31, 2014 at 12:11 am

    My heart is with you, your wife & daugher and your family & friends. I’ve been following your blog after reading your story. My husband has appendix cancer and I know that we are not destined to grow old together. Thank you for sharing your story. Sending you strength.

  18. MrsMcG
    August 31, 2014 at 12:33 am

    My thoughts are with you and your family right now Jared. I there was something more we could say or do to help you through this.

  19. neil mckinnon
    August 31, 2014 at 9:57 am

    Hi Jared,Hannah and Elise, We are still praying for you but it looks as though the focus of our prayers is about to change. Thank you so much for sharing your thoughts and situation with us especially the technical details 🙂 We host a taize’ service once a month and often light a candle for you guys. Blessings and abundance to you all Neil and Isobel McKinnon

  20. Jan
    August 31, 2014 at 10:01 am

    God bless you on your next journey, Thank you for your blog, my life is so much better for having followed you. You are a true inspiration, and a wonderful man who will never be forgotten.

  21. Bruce and Ruth Reynolds
    August 31, 2014 at 11:46 am

    Psalm 61, 1-5
    “Hear my cry, O God, listen to my prayer.
    From the ends of the earth I call to you, I call as my heart grows faint;
    Lead me to the rock that is higher than I.
    For you have been my refuge, a strong tower against the foe.
    I long to dwell in your tent forever and take refuge in the shelter of your wings.
    For you have heard my vows, O God;
    You have given me the heritage of those who fear your name.”

    Our son Wayne’s final Bible reading as he prepared to meet his Lord.
    God bless you Jared, and thank you for your incredible testimony.

  22. August 31, 2014 at 4:35 pm

    praying for you in this journey, knowing that there is incredible light ahead of you with Jesus. i totally welled up with tears reading this.
    you’re so brave.
    praying for hannah and your daughter and your family and friends.

  23. Dyana Parore-Connell
    August 31, 2014 at 5:00 pm

    Thankyou Jared for sharing your blog with us all. God bless you on your next journey.Love and thoughts to you, Hannah, Elise and all your other family . . You are a true inspiration . and one day your blog will be so treasured by your daughter.

  24. August 31, 2014 at 5:27 pm

    “Every blessing You pour out
    I’ll turn back to praise
    When the darkness closes in, Lord
    Still I will say

    Blessed be the name of the Lord
    Blessed be Your name
    Blessed be the name of the Lord
    Blessed be Your glorious name”

    Sang this song today in church and thought of you. Thanks for sharing your journey with me and many others. You are an inspiration to me, you have such a strong faith it it truely shines for God. I am grateful to have met you a couple of times and listened to you speak at Eastercamps and of course read your blogs. Thanks for showing me that God is around and he cares and loves everyone, even in times of darkness and suffering, he is there. It reminds me of the story foot steps when God said, “the times when you see only one set of footprints, that is when i carried you.”

    Thoughts and prayers are with you and your family.

    August 31, 2014 at 5:38 pm

    Thinking of you all, thank you so much for sharing your journey xox

  26. Maree
    August 31, 2014 at 6:13 pm

    Dear Jared, Hannah and Elise,
    Our thoughts and prayers are with you we will continue to pray for you in our home-group there are so many lives you have touched through this journey. Thank you for sharing so openly and bravely, you have taught us so much and we are all better people as a result of your ministry. Please don’t apologise or concern yourself if you are unable to update your blog as often as you would like – we understand. Please know that we love you and are here for you and your family, I pray you are able to spend real quality time with those closest to you and treasure this special time with them. Much love and God’s blessings, Maree xx

  27. Liz Mack
    August 31, 2014 at 9:53 pm

    You are incredibly brave, extremely strong and an inspiration to your family. There may not be light in your tunnel, but I think you are the light. I wish you much strength on the last part of your journey. Love and light beautiful man.

  28. Patricia McDonald
    August 31, 2014 at 11:11 pm

    Thank you, Jared, for this moving message. Our love to you, Hannah and Elise. You wanted to finish well .. you sure are! In our hearts and prayers , all of you. Patricia and Ian

  29. Erin
    September 1, 2014 at 12:25 am

    Thinking of you all right now xxx Thank you for sharing your journey with us Jared – I have been reading your posts for a while now & every time I did, I would say a little prayer & attach a few swear words to let who ever was listening up “there” to give you a break. But sadly that is not to be 😦 Sending love, hugs & heaps of prayers from Dunedin. Kia kaha & arohanui xxx

  30. Margaret Crawshaw
    September 1, 2014 at 1:07 am

    I’m a cousin to the Alcorn gals. I live in the USA and my husband is a Pastor.

    Jared and Hannah please be assured of our prayers as you go through this difficult and heart wrenching journey.
    Jared you are a very brave soul.
    I know God will give you the strength each day.
    May He wrap His arms around you 3.
    God Bless and my love to you’ll.

    Margaret Crawshaw.
    (Sarah’s cousin)

  31. Lucy Hazelwood
    September 1, 2014 at 10:25 am

    Continuing to pray for you and your family.

  32. Sosna family
    September 1, 2014 at 11:34 am

    All our love and prayers for you and the family. Matt 25:23.

  33. September 1, 2014 at 12:18 pm

    I have followed your journey for such a long time, willing you on and amazed at your ability to do just that. I rejoiced when our lovely daughter was born, and now I am so sad your life is winding down to its end. My thoughts and prayers are with you and your family. Treasure your time together, and know that you will always be remembered. Such an inspirational person, incredibly brave, and so so totally honest about your journey. May God’s blessings accompany you during these days. – Elaine M (Dunedin)

  34. Dee Karena
    September 1, 2014 at 12:57 pm

    Dear Jared and Hannah
    Even now there are still little blessings. You got over the biliary sepis thing and you escaped from hospice and are now home. Where you belong and can have day long cuddles with your daughter if you want. You can watch her learn to crawl and you can still feed her. Blessings are there in your life. Even though your time with her is running down you have achieved so much Jared. You’ve educated us who are members of your blog and facebook page. I admire you Jared for the tenacity and determination you have shown in the last few weeks when you and Hannah decided to go with pallitive care. It’s true we pull out all the stops when a loved ones mortal hours on this planet are limited. My wish for you now is peace and love. You are in my prayers constantly Jared. God bless. Dee *big hug*

  35. Kim
    September 1, 2014 at 1:44 pm

    Thank you for letting us follow your journey , huge hugs to you and your beautiful family.

  36. September 1, 2014 at 1:45 pm

    Thank you so much for allowing us into the deepest parts of this battle through your words. We have a better understanding of suffering, hope, faith and so on because of them. You always have a way of filling us with Hope, even now at the end. We know your daughter will be incredibly proud of who her dad is and your powerful impact will continue to ripple out into her life and ours. All our Love and prayers, The Franklins

  37. September 1, 2014 at 2:05 pm

    Right on every count. Your thinking is not that dulled yet. Peace

  38. Bev McKinnon
    September 1, 2014 at 3:07 pm

    Jared, I have been following your blog for a long time, but never made a comment. I would like to say thank you, like so many others have said, for sharing your journey, and your heart with us. I have been very touched by your every day faith, and your outworking of this in the most difficult of times. You have blessed me and inspired me and moved me deeply. May God be especially close to you and your loved ones in the coming days/weeks. Much love and prayers, Bev.

  39. scully
    September 1, 2014 at 5:48 pm

    You are truely an AMAZING human being, thank you for sharing your story with us

  40. Giota
    September 1, 2014 at 7:03 pm

    Love to you, Hannah and Elise. Wishing for special loving moments together with your family.

  41. Sarah
    September 1, 2014 at 10:18 pm

    Dear Jared and family,
    Thank you for your honest and inspiring blog. I too read and have never commented, but think of you often.
    Elise will one day grow to know what an inspiring man her father is.
    I wish you peace, happiness and comfort in your time left here with your family.
    Thank you,

  42. Annet Vermeeren
    September 1, 2014 at 10:35 pm

    i am amazed at your strength. Your thinking comes across as very clear and sensible and not “foggy” what an amazing person you are. Hannah can be so proud of her husband and your daughter of her wonderful dad. They will miss you so much
    You would have been such an empathic Doctor. We need so many more of them.
    Why must your time be up now? Try and have the best quality of life possible for yourself and your loved ones.
    Hope your pain, nausea and sepsis remain under control

  43. Theresa
    September 1, 2014 at 11:21 pm

    Thank-you from a stranger. I will miss your positivity and outlook. I am very sad for you all. Still,l you have that way with words, even now; I loved your last sentence.
    Thank-you God for this gift of Jared and Hannah and Elise.
    Peace……..Theresa of Dunedin, now in Australia.

  44. Peter
    September 2, 2014 at 2:05 pm

    Thank you from a palliative care nurse who has cared for you, was touched touch so much by you and Hannah, that new there was something about you both. Thank you for leaving your promise keeper stuff on your blog, my children husband and I have watched it and it was amazing. Rekindle our love for God and I thank you. As things change for you and Hannah I know you will be blessed together and Elise will know as she grows that you suffered because of your God and you have glorified him- till next time thank you

  45. September 2, 2014 at 4:53 pm

    I will be forever grateful for everything you have done for me during my experiences with bowel cancer – as an ambassador for BBCA (all those TV interviews etc. spreading public awareness), personal advice, and hope and inspiration. Thank you.

  46. Aroha
    September 2, 2014 at 10:03 pm

    Wishing you and your beautiful family lots of love and support during this time, your blog is really inspirational and to read such an intimate journey that you have chosen to share is really touching….I am so greatful there are special souls here on earth like you, thank you Jared

  47. Ben
    September 3, 2014 at 6:59 am

    Hi came across yr blog earlier in the year, and amazed at your attitude and perserverence, unbeleivable . Congrats to make it home! ! Hope the best for you , hope a miracle happens! You deserve it.

  48. neil mckinnon
    September 3, 2014 at 8:12 am

    Hi Jared – you won’t get to read this unless I write it now – its a quote from John of the Golden Mouth – St.Johannes Chrysostomos. “those whom we love and lose are no longer where they were;they are now wherever we are”

  49. September 3, 2014 at 9:37 pm

    I, too, have been a bit of a non-commenting stalker on your blog Jared. You are a truly inspirational human. Thank you for sharing your journey with such honesty and humour. I have no doubt you are a fine clinician, and I am sure your attitude and humanity will have rubbed off on your colleagues, probably more than you will ever know. Wishing you peace, fair winds and following seas. Deralie Flower

  50. Christine
    September 3, 2014 at 11:12 pm

    Thank you so much Jared for showing us Jesus through your illness. Hundreds and hundreds and thousands of people have heard His name because of you. My husband and I will be facing our daughter’s death from CF sooner or later, and your story has given me hope that when it happens, Jesus will sustain us. Thank you for sharing your life with so many of us, and God bless you as you enter His loving arms.

  51. Naia
    September 4, 2014 at 4:01 pm

    Thank you Jared, for the honesty and clarity of your journey. I am a daughter who watched her father battle bowel cancer bravely and courageously. Despite losing him – I know he lives in my heart not just by the memories I have, but also by how much he was loved and respected by others. Your daughter will be proud of you – your courage, your faith and most of all your hope in Jesus. Blessed be the end of your journey – good and faithful servant.

  52. sarah
    September 4, 2014 at 9:50 pm

    Dear Jared, Hannah and Elise, love and thoughts and prayers are with you. May He hold you especially close in His arms at this time. Thank you for your vision and courage in sharing this blog over the years.

  53. Dee Karena
    September 5, 2014 at 1:32 pm

    *taps on door and pokes nose in* How’s your day going? The sun is starting to poke it’s nose through so it might be a nice warm weekend. 🙂

  54. September 6, 2014 at 8:47 pm

    your impact is a lot further reaching than you probably know –thank you http://utmost.org/the-far-reaching-rivers-of-life/

  55. Ctz
    September 7, 2014 at 5:34 am

    Thank you Jared once again by sharing your journey …a window into the heart of my Mom’s cancer. A life well lived. God’s grace and peace these next days. I’m so grateful you have a faith in Jesus, and so grateful that you have your daughter.

  56. Maree
    September 7, 2014 at 11:03 pm

    Dear Jared, Hannah and Elise,

    Been thinking of you all day. I pray you have had a blessed Father’s Day Jared celebrating this lovely sunny day with your beautiful daughter 🙂 We are praying for you every day and will continue to do so. We love you guys so much.
    Much love and special hugs to you all,
    Maree xxx

  57. Monica MacRae
    September 11, 2014 at 12:24 pm

    Hi Jared,

    I have been overseas and fell a bit behind on your blog. But i want you to know that I regularly think of you and hope that things are going as smoothly as possible in such a dire situation. I have just read this and hope that since your writing this post you have remained as comfortable as possible and as content as you describe being here.
    Thank you so much for sharing your journey with us so openly and honestly.
    It has been such a privilege to get such an insight into your experience.
    Like me I know there are many other Doctors reading your words, and you should feel proud in the knowing that in some way or other you have influenced our future practise – for the better of course.

    Sending you and your family so much love and light,
    Monica MacRae
    (The girl who cried with you about my own journey after your talk at ACH to the HOs).

  58. Carolyn
    September 15, 2014 at 11:27 am

    Jared, you are one of those special souls that only come along once in a while. You are the sort that leaves a legacy that many will remember. Your legacy is one of courage, faith, compassion and honour. You will not be forgotten. While reading your comment the words, ‘Fear not, for I am with you’ come to mind. You are about to take a journey that we all must one day, however the good news is your ‘room is being prepared in your Father’s house’. Go in peace and go in love …you are expected, and may your family find strength in this knowledge.

  59. Janice West
    September 17, 2014 at 6:26 am

    Thank you Jared and Hannah, you have been an inspiration to me and many others

  60. Maree
    September 20, 2014 at 7:47 pm

    Dear Jared, Hannah and Elise,
    We are here with you and will not stop praying for you. I want you to know that from a medical and nursing profession viewpoint, you have made such a difference to the way we practice and care for our patients. I have learned a lot from you and personally want to thank you so much. Your legacy will live on. I feel so privileged to have met you I will never forget you and I feel so blessed to know I will see you again one day! May God be your strength and may you know God’s comfort, love and peace at this time. You are loved by so many, lots of hugs to you all, Maree xxx

  61. Liz Holmes
    September 21, 2014 at 11:06 am

    May the LORD the maker of the heavens and the earth bless you and keep you… may he give you His Shalom…

  62. Dee Karena
    September 22, 2014 at 10:57 am

    Hey Jared. Just wanted to say I hope you had a neat Fathers Day the other weekend. 🙂

  63. Maree
    September 30, 2014 at 4:33 pm

    Hey Jared, Hannah and Elise,

    We are still here – we are praying. Love you guys lots, many hugs,
    Maree xxx

  64. Giota
    October 7, 2014 at 3:47 pm

    Hi Jared,
    My thoughts, love and prayers are with you and your family. You guys are not forgotten.

  65. Liz Read
    October 8, 2014 at 7:35 pm

    Jared, I’m sitting here in tears as I learn of your passing. Even though I didn’t know you much personally your openness gave us the blessing to walk through your suffering in some small way. I have rejoiced at every answered prayer and now I rejoice that you are free with your saviour! Thank you for being a source of inspiration and an incredible witness to the redeeming work of Christ Jesus our Lord. Your legacy will have far reaching impact to the glory of God. Much love and prayers for your family at this time.

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