Sleeping beauty

It’s 8.15 pm. I’m writing this from Caroline’s hospice room which is part of Modbury hospital. The hospice is on level four, and it has views looking out to a big Westfield shopping centre, in case anyone was wondering.

The process of Caroline being admitted into the palliative care ward happened much quicker than either of us thought it would. On Friday morning C had made the decision to stop taking her chemo tablets. It was a decision we’d talked about before and agreed that C would know when the time was right. When she woke up Friday, she knew it was time. She was struggling to get out of bed such was the level of her exhaustion, her spleen was still causing her pain and she said that she felt as though she wasn’t weeing or pooing properly. Like her body was starting to fail.

It was an emotional decision to make not only because of the consequences, but because a part of Caroline felt that she was giving up. I told her she wasn’t giving up, she was simply letting go of all that was holding her back from where she needed to be: that by letting go of everything she could relax. And find some peace. I think she managed to reframe her decision in that light and did seem relieved.

After this conversation I rang the registrar, Michelle, to ask how quickly the leukemia would progress. It was a moot question. The leakemia had already started to take over, and C’s blasts were at 47%. The decision to stop the chemo was also redundant, which seemed to vindicate the path C has chosen for herself.

Anyway, after a few more phone calls with doctors and the palliative care people, a bed was made available for C and she was transported from home by ambulance at 2.30pm. Seeing her strapped to a stretcher and lifted into the back of the ambulance, knowing she was never coming home, was one of the first of many meltdowns that day.

At the hospice we met the doctors and were told that Caroline’s time with us would be very short. A few days probably. The best case scenario is that C ends up sleeping 24 hours a day and then quietly slips into a coma. She is close to this now. Staying awake is a chore and she has little energy to talk. The worst case scenarios don’t need to mentioned.

As it stands now, C has stopped all her pills except her pain management. Her spleen is enormous and she could be mistaken for being pregnant. Eating is of little interest.

Her registrar paid her a social visit last night as a friend, not a doctor. Again, a huge indication of the amazing care the medical team has always given Caroline.

Yesterday I said to Caroline that maybe we had been greedy with our love. That perhaps there are only so many kisses you are allowed in your life and rather than the leakemia killing her, she had just run out of kisses. It makes, for both of us, the process of dying a more gentle one, rather than the brutal reality that Caroline’s body has betrayed her in the most brutal and cruelest of ways.


22 thoughts on “Sleeping beauty

  1. Bless her beautiful heart. I only pray she can be kept out of pain in her last hours with you . May you hold her hand until the end and please tell her Thank you from me . Thank you for sharing some of her time with me xxxxxxx

  2. Thank you for sharing these heart wrenching words. All our love is with you and Caroline. There is eternal beauty in the love you share. And the love that Caroline has shared with all of us, we are so grateful for. Thank you Caroline for the special treasured friendship and for the love you have shown me and my children. Big loves xox

  3. Thank you dear, lion-hearted Donna for your beautiful post at such a hard time. Wonderful that Caro is peaceful and comfortable. We have our arms around you from afar, love Carol, Sandro and as always, Lily and Daisy xoxo

  4. My love and courage to you both. You have given a gift Christian, a most admirable one. Donna please say to Caroline, ” Don’t be so cheeky Chenny! ” If this would cause her to smile……words escape me…Biggest love.xxxxx

  5. May it be the gentlest of partings after the cruellest of blows. This pain must be immeasurable. Hold each other close and know that we all find each other again some day.

  6. Oh, Donna. How hard Caroline has battled, and you beside her. This disease can’t be made sense of. But as Caroline drifts away, those many many kisses are, I’m sure, like thousands and thousands of precious petals swirling around, surrounding her in your amazing love, whatever and forever. Our love to you both. Lucy & Olivia xoxo

  7. Donna I don’t know if you are in a position to realise right now how extraordinary you are in being able to come up with just the right way, just the right words to bring Caroline the comfort she needs, to keep the guiding love that has surrounded her unbroken. So often those of us here have spoken of having no words, but in the most gut wrenching of times you have had just the right ones for her, and for you. And that you’ve shared them with us is beyond precious. When word reached out that C had asked to go to the hospice, in a little corner of our home, on a table by windows looking out to sea, I placed a copy of C’s very first edition of Barossa living, a silver Conran vase full of massive branches of rosemary (C would appreciate the Conran vase 🙂 ) and lit a lily of the valley candle for her, something I know will continue to glow until she’s ready to let go completely, having fought this face on with a strength, ferocity of will and a depth of love for you few of us will ever experience in a lifetime of kisses. Donna I don’t think it’s possible to respect someone, admire someone, and be humbled by someone, as much as it is by you right now. Hold her so very close, cover her beautiful, beautiful face in butterfly kisses and rest easy she has lived a life, thanks to you, filled with more kisses, and more love, such a love, than most people can even dare to dream of. Heart broken with you.

  8. And may you be peaceful, too. The courage and love you both have in abundance is something to behold. Very much love to you both.

  9. God dude. How you manage to find the strength to write about this, and so articulately, is just incredible to me. But thank you for writing it… for us, for you. I can’t imagine how incredibly hard this must be, and how unbelievable and surreal it must seem. It feels surreal enough knowing all this is actually happening.

    I love that sentiment that you only get so many kisses in life… it’s a really beautiful way of looking at the situation. A really lovely ‘glass half full’ attitude for a cruel, unfair, painful situation.

    As I type this through tears streaming down my face, feeling my baby kick and hearing my girls play with their dolls like any ordinary Sunday morning, I struggle to understand the gives and takes of life. And how this could be happening? And why? It’s so cruel what C and you are going through, after what seemed like yesterday when she was given the all-clear. It’s so confusing, so so cruel… I hate that this is happening to two of the best people I know and love. It’s so fucking unfair.

    All I hope is that C is free of pain, that she knows how much so many people love her, and you, and that you have as much support around you as you need dude. You are incredibly strong and brave. And you are both so lucky to have found each other, and had the time you’ve had.

    So much love, tears and hugs for you. xxxxxxxxxxxxxx

  10. Sending our love Donna, can’t write more just can’t find the right words, but you both have touched the lives of so many people, two of the loveliest people I have met. We will be here for you on our return, the door will always be open and a coffee on the go (or glass of red wine). xxx

  11. Our precious Donna, our love to both you and Caroline and just letting you know when we talk of heroes at school we will be talking about people like you. All our love and hugs to you both. Jan and Barry xx

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