Monday, May 18, 2015

Further along








I almost missed the azalea's short lived blooms, tucked away in the far corner of the garden. My energies have been directed elsewhere - making sure I don't miss a moment of the remaining time we have as a couple - as a family. 

John's condition has deteriorated very quickly over the last couple of weeks. I was managing on my own, then with the help of the District Nurse team and our GP, but as we went along it became clear that he needed full time care. He was admitted to hospital on Friday, where they have been working to get on top of his acute symptoms. We have just been spending time with him, holding his hand, reading out loud and chatting, catching a bit of crochet in the gaps. My step-daughter is here, taking some of the burden, helping with James, folding laundry (much more nearly than I do) and spending precious moments  with her Dad. 
It was good for me to share some time in between hospital visits, with James on his own, snuggling on the sofa, eating ice cream (raspberry magnums) and watching rubbish telly. He is doing ok, he knows where this is going.

And we move on, through these cycles of hope and despair, somehow adapting to each new phase, finding whatever grains of normality we can and holding on - yes, just really holding on.

Tomorrow, John is moving to our local Hospice. Another stage, another leap into uncharted waters.  We don't know for how long, or if he will be well enough to come home at any point - but here we are. He is at peace with this decision and I know we will all be cared for. 
I cannot begin to say how much strength I have gained from the kindness of others; from friends in the community, family, our church family and the genuine and loving comments online.  It helps - it really does. Thank you.  xx

68 comments:

  1. Sending love and prayers, Tina xxx

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  2. Remembering your family in our prayers x

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  3. Holding you in prayer Sarah

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  4. Holding all of you in the light. x

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  5. Keeping you all in my prayers xx

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  6. Jesus is holding your husband's hand, and I will pray for strength for you and your family

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  7. Hello. I have followed your blog for some time, but have never commented before. I just wanted you to know that I have been thinking and praying for you and John and your family. I send warm wishes from here on Orkney, where I live.

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  8. I'm just so sorry. I don't know what to say. Like others we will hold you and your family in our prayers. God bless x

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  9. my thoughts and prayers are with you all.

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  10. Praying that God's strength and comfort will surround you all. May His love, and His peace that passes all understanding, embrace your precious family at this time. Sending hugs from Down Under!

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  11. I'm so sorry for you. Keeping you all in my prayers.

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  12. Dear Jacqui, I continue to hold you, John and James in my heart and in my prayers. Your love and spirit inspire me, and I wish to return that energy back to you all. xo

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  13. Words fail...my heart weeps...peace...

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  14. Dear Jacqui, I'm sorry I have not kept up with your site or the blogging world this last year, but just checked in today. My heart goes out to you and John and James as you navigate this heart-breaking terrain. I'm so glad you have a hospice available to you--it makes such a difference. In nursing school we watched a movie called Wit, with Emma Thomson, a really poignant picture of an intellectual woman coming to terms with her cancer. In one of the end scenes, a friend reads her the children's book Runaway Bunny, and it becomes a kind of metaphor for her--that no matter where she goes, her mother will always be with her. And even in our illness, death, grief, we are not alone. May you find grace and courage with which to meet each day. Many blessings, Annie.

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  15. Oh Jacqui, how profoundly sad this journey must be for you as a family. Prayers and Peace as you travel it. Love Tricia

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  16. Sad for you, but your words are full of love and strength. Thank you for sharing your journey through these precious days.

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  17. Yes, uncharted waters yet accompanied all the way by the warmth and love of so many in real life and via this virtual world.
    Ramona

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  18. Love and prayers to you all at such a difficult time. I have followed your journey for some years now and feel deeply for you as you face this time. May God's loving presence be with you xxxxx

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  19. Sending you all a hug, you are in my prayers.

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  20. I feel tears for you as I'm reading this. There's nothing more I can add that people above haven't said. Hugs.

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  21. Warm hugs from the Fens for you all, and we will be keeping you all in our prayers now and in the days ahead.

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  22. Sending warm and loving {{cuddles}} as you travel this path. May you find strength and support from those around you and in your faith.
    xxxxx

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  23. I read your blog regularly - I'm in Canada- and I am so sorry to hear that your family is taking this journey.With good wishes to you and your family.

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  24. Really sorry to read this sad news. You, John and your family are in my thoughts.

    Frances SW

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  25. It is a good thing, to know when it is time to ask for help. My prayers and thoughts are with you and your family.

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  26. I'm so sorry to hear that you are now facing this journey. As usual your words are so full of love and courage, they stand as a testament to your circle of family love that can never be broken. Every best wish to you and yours.x

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  27. Hugs and prayers for you and yours,

    Barbara

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  28. Love and strength to you my dear friend, oh, and always prayer for all of you.
    XO

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  29. My prayers are with you all as you enter this new chapter. Remember to breathe.

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  30. Thank you for your beautiful and strong witness to trusting in God and accepting his will. Know that in your pain and broken heart you are loved by many you have touched and inspired on your blog.I pray that Gods peace will surround you and your family and that He hold you in the Palm of His Hand.

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  31. Holding you in my thoughts, you'r words are beautiful and brought a tear to my eye and reminded me of the one's I have watched slip away before their time to a dreadful disease. There is nothing stronger than the love and support of family and friends at this time spent together at the last. Take care x

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  32. Love and light to you and yours on this oh so tough journey. Its been said above more beautifully than i can, so i echo all the love and grace from your online sisters.

    Joy (my name and for you where ever you can obtain it!)

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  33. oh Jacqui. my heart aches for you....

    i'm so glad you have the love and support of your family and community...and that your faith is holding you up.

    sending so much love to you and yours.....you'll be in my heart and my thoughts...i'll be sending my prayers into the wind for you all.

    xoxo

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  34. Thinking of you all at this time. Wishing you all strength, calmness and love. Xx

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  35. Actually, it is we who should thank you. For showing us how to cope with such grace.

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  36. Oh Jacqui... I'm so very sorry. I will continue to keep you all in my prayers. Know that you are held fast in the arms of Love, every minute.

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  37. Oh, Jacqui, as soon I saw your hospice photo I started crying. I knew it wasn't going well, but I wasn't prepared for it to be so soon. I can only imagine how it must be for you. This past winter my friend's thirty something daughter died after quite a few battles with brain tumors and other cancer through out her twenties and thirties. She left behind a husband and two small children. During the end I was so blessed by her husband's posts on Facebook about the intense love he was experiencing. This is the most amazing post and I feel like you might really connect with it, so here you go:

    "Some days Abby is on the couch asleep all day and some days she's awake and present in the moment, though confused about where that moment may fit into the puzzle of a reality that the rest of us occupy. The tumor is pressing on the part of her brain where memories are stored, which has mostly erased her short term memory. She doesn't know what happened earlier today, or yesterday, or last week. She lives in the now.
    The day before yesterday she was asleep most of the day and barely coherent when I woke her to give her medicine. Someday, and likely soon, she is going to fall asleep and not wake back up so I am always half wondering if this is the time she will drift off for good. I wonder if this is the time that I'll kiss her sleeping face and she won't wake up. I wonder a lot about lasts.
    After I put the kids to bed I lean over her and,when I kiss her lips she murmurs but doesn't open her eyes. She has a hard time getting herself from a sitting to a standing position so I put my arms around her, wedge my shins against the couch and, levering us both upright,I steady her on her feet. I imagine I'm going to walk her, half-asleep, to the bedroom and get her tucked in for the night but she puts her left arm over my shoulder and holds up her right palm. I wondered what she's doing but my hand goes to hers before I even realize that she wants to dance. I get close to her, grinning, and she lays her head against my chest and gives me the weight of her body. There's music on the radio and we dance there gently in that perfect moment, our future too close to contemplate and our past an elusive memory.
    Unless you are in a situation like ours, wondering if every time you kiss your wife will be the last is probably a sign of paranoia. I have noticed, however, that wondering if this will be the last time, causes an emotional intensity like nothing else. The possibility of losing Abby has been my reality for many years because of what medicine has told us about her disease but, when it comes down to it, everyone is in the same boat we are. Everyone who loves can lose it in an instant. They just might not have the luxury of seeing it coming like we do.
    I wonder if its possible to achieve this level of intense love for someone without the knowledge that time with them may be scarce so I thought I would propose an experiment:
    Tonight, hold your lovers face in your hands and imagine that they will be gone forever in the morning. Forget the past and the future. Make love to them like this is all you will ever have of them. Because it is."
    ~Brian Gartland, January 23, 2015

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  38. Jacqui, My heart goes out to you and your family. May God surround you with His love and may the Comforter be your companion.

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  39. My dear, my heart goes out to you totally. My late husband suffered with cancer for almost nine years and it is one long hard thing to face and endure. I have morning prayers each day and your good husband's name will be added to that little list I keep in my Bible and silently pray over individually. Remember, God does has his hand on your shoulder during these difficult days and always has, always will. Fondly from a friend in the USA.

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  40. My thoughts and prayers are with you as you travel this path.

    God bless.

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  41. From Margie in Toronto - so sorry to hear this sad news. You have handled all the stages of this terrible disease with such grace and dignity. Please remember to look after yourself as much as you look after others. Thinking of you and wishing that I had more words of comfort.

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  42. Sending you love and comfort. We are watching my sister on her journey in much the same way. May your family be wrapped in The Saviors arms and His love on this journey.

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  43. I continue to pray for john and you and your family. My uncle went to hospice last fall after a lengthy year battle of bladder cancer that was quite painful. Only in hospice did he finally receive pain relief. And my aunt loved being there with him and the care they received. Take care of yourself. You are loved.

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  44. Prayers for your and your family as you walk the path of this hard Providence. May HIS peace be yours!
    xo Lisa

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  45. Courage, courage, courage.
    Blessings to all.
    Peace

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  46. Thinking of you each and every day...sending love and prayers to you and your family.

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  47. Bless you and your family x

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  48. A dear friend contacted me to lead me to your blog. I've read through many of your posts--they brought back memories of losing my daughter to metastatic breast cancer 5 years ago. She was only 37 years old and her son was shy of two years old. Fourteen months of hoping, bargaining, and finally reaching the point when Kelly said to me, "I'm happy." I want you to know I understand and my heart goes out to you and your family. XOXO

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  49. Thinking of and praying for you and your family. JJ

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  50. I am sorry that your husband is so unwell. I have always enjoyed reading your blog and feel very sad.
    I will pray for you and your beautiful family.
    Wendy

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  51. Followed you here for a long time Jacqui, your James and my son are the same age. Your family have been in my thoughts often these past months and I'm so sorry to hear this news. Sending strength and love to you all x

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  52. Thank you for this beautiful post. Praying for you all as you tread this difficult road. xx

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  53. Thinking of you all and sending love. xx

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  54. Kindest thoughts and prayers to you and your family.

    Sue McD

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  55. Haven't followed your blog for a while. My daughter happened to look your blog, she also hadn't seen it for a while. What a shock to learn of your journey through cancer. I remember your hospitality when we visited you - must be 4 years ago, in your lovely croft. I am so very sorry. I pray that you will continue to be given strength each day, for that day's needs. I will hold you in my thoughts and prayers. With love, Marilyn.

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  56. I have a huge lump in my throat reading this Jacqui, thinking of you and your family and glad to hear you are getting the support you need xx from Bonnie

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  57. Just a line to add my thoughts to you, and say how much I admire your courage and dignity at this terrible time.

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  58. You and your entire family are in my thoughts and prayers. Sending you love and peace from America.

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  59. Hello Jacqui, just stopping by to give you my love and say that you are all in my prayers x God be with you

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  60. Thinking of you all and holding you in my thoughts.Claire (lemno living). Xx

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  61. I havent check in with you in a good while Jacqui, and I was sad to read of John's illness. You will all be in my prayers tonight. Much Love
    Valerie
    x

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  62. So sorry we can do nothing more than leave a kind comment :-(

    Thinking of you.

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