My baby’s out of time

We had a call from the registrar, Michelle, last night. It wasn’t the usual “”we need to change you medications call” or “you need to go and have a transfusion call”. It was a call to tell us that based on Caroline’s blood results, and all of the physical symptoms she is experiencing, my darling girl only has a few weeks to live. If something catastrophic happened, like and infection or internal bleeding due to her low platelet level, it could be days.

Michelle spoke with Caroline first, and then with me. Surprisingly, C and I were remarkably calm at receiving this news. We had both had a very teary day yesterday, which is unusual for us, so it was like in some way we knew what was happening. Michelle just confirmed it.

Each day now is more of a struggle for Caroline. Getting out of bed takes all of her mental and physical strength, and showering and dressing sees her need to lie on the couch. Her appetite is minimal but she is still eating, and she’s trying to keep her fluid levels up.  She generally sleeps around 20 hours a day but can stay awake longer. It does, however, totally deplete her. She’s alert when she’s awake, so we are able to have conversations. About life and love mostly. And life after her death. They are heart wrenching, yet also lovely and reassuring.

None of this is, however, easy. We both feel like out hearts have been smashed open and our lives torn apart. And we don’t understand why all this had to happen. We remind ourselves that we are incredibly lucky to have 22 years of pure love together, but feel cheated and angry that we don’t get to have 22 more.

We had previously made a decision that we both wanted. if possible, for Caroline to die at home. However, having talked with Michelle, we are now looking into hospice care. That fact is that it can be quite a harrowing experience watching someone die alone, and there is no guarantee that help would arrive in time to be with me.  Also, as Caroline worsens there is a big possibly that she will be so overcome with exhaustion that even walking to the toilet will become impossible. Hospice care means that I can be with my lovely girl as we have always been together, as partners, and not as her carer. There will be a team of experts working to care for her and make the transition as peaceful and pain free as possible. We are speaking to our palliative care nurse – yes, we now are in the palliative care system – on Monday. And we hope, that when the time comes, a bed is available.

x

 

 

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38 thoughts on “My baby’s out of time

  1. So sorry. I’m thinking of you and feel really privileged to have been on the incredible journey with you both. You are both an inspiration.

  2. D as always thank you for sharing your heart, your love, with us when you must be in such acute pain. I’m glad you’ve both made a decision that allows you to just be with each other whilst others take care of you both. Go gently, both of you. Unbelievably sad. And unfathomable.

  3. Dear Donna and Caroline – such harrowing reading, but your strength and calm is truly inspiring. Our thoughts and good wishes are with you. Much love to you both, from a fellow traveller. X

  4. My Heart just sank,as I read this Email. I have just been thinking of you both,and wondering how Caroline was going.I started following your Blog,after Lisa Wilkinson talked about her dear friend Caroline one day. That was at the Beginning,and now you both feel like my Friends as well. I also feel Privileged to have been able to share in Your Lives,and I’m hoping to be able to keep sharing for a lot longer yet to come. I hope you are able to find a Palliative Care Hospital where Caroline will be well looked after,and you will have added peace of mind in knowing that as well. Love to you both,Carol xx.

  5. Listen and you’ll hear the sound of hundreds of hearts breaking at this saddest of news. Truly, the saddest. You’re amazing to have written this post. Please feel our love as some kind of wholly inadequate comfort. Love you both. We’ve said it before and it will be said over and over again. As individuals you are both gorgeous and clever and kind and funny and talented and quite simply amazingly so much more. Together, you are extraordinary. Crying for you. xoxoxox

  6. The courage and bravery you’ve both show through this has been inspirational. This is heartbreaking news and my love and prayers go out to you both x

  7. Beautiful, amazing, courageous…to say I’m grateful for the love and light you both give is severely understating the way I feel. Thank you beautiful Caroline for your friendship, I really look up to you and love you so much. xox

  8. We wish you both the most loving beautiful time together over the next period of time.You have both shown us what courage and love looks like. We thank you both for that.All our love to both of you.xx

  9. Darling Girls — I struggle with how to respond to this (and I can’t believe you had the strength and wherewithal to write this post given the news you’ve just had). I’ve been playing back the highs and lows of the last nine months (and let’s be honest, mainly lows) and yet again, what stands out is the remarkable dignity, strength, courage and love that you two have shown. It’s like nothing I’ve ever seen or experienced before (and just quietly, it makes me feel a little inadequate). It’s this that will see you both through the days ahead. I think the hospice is a good idea – it takes some of the pressure off you, Donna, and means the two of you can spend this precious time together without having to worry about nursing dramas. So glad we all got down to Adelaide the other week to see you two. As Alicia says, go gently.

  10. Dear Donna
    There is nothing I can say but I am sending you waves of love that your last days and weeks together can have more bitter sweet happiness than sorrow. I know what a fine person Caroline is from knowing her in Sydney but I can see you are equally as fine and brave and I’m really grateful for all your wonderful missives through these horrible times. I feel I know you now. Please send Caroline all my love and affection – and I wish you both a beautiful few weeks xxxxLee

  11. This is the saddest news. …and words are completely inadequate. But you both are stunningly brave people – and now it’s time to let others take care of you both and just be together. My love, admiration and thanks to Caroline…and to you, too. I’m with you both in thought and heart.

  12. Beyond shattered. I can’t grasp a world without Caroline. I adore you both – you know that. I’ll call over the weekend. My heart truly aches. All my love xxx

  13. Dear Donna, you are so brave. You both are. Good decision to let others nurse Caro so you can be together, side by side as you have always been and not have to worry about anything else. Our hearts go out to you, please give Caro a kiss from us, love Carol, Sandro, Lily and Daisy xxxxoooo

  14. Dear girls.
    My heart hurts but is overflowing with love for you both. I’m so glad we spent those moments together in Adelaide, though never long enough.
    I’m struggling to find the right words but I think you know.
    Strength to you both, I’m thinking of you always. X

  15. Like Carol, I too started to follow your blog after Lisa W mentioned it. I keep hoping with each day that the news might have been better – selfish of me because I want to hear more about you both. I can only imagine what a wonderful life you have shared together, the good, the bad and the “f8ck this is shit”, but I feel so special to have been a silent onlooker. Say all that you can to each, while you can xoxox

  16. My heart is breaking for you both. I had to read that twice just to believe it. And I still don’t. Jesus Christ where is the sense in this world when this happens? It’s just so, so unfair. It’s fucked. And Donna I can’t imagine how impossible it would have been to write that, it must seem so unbelievable even as you write. But bloody hell thank you for sharing with us, I’ve been reading in disbelief all the comments on your page on Facebook and it’s just so, so sad… everyone is just devastated. I’m just in a flood of tears for you both, I’m struggling to think of what to write, fuck, what do you say? Glad you’re going to get the care she needs right now so you can focus on being the loving supportive partner you’ve always been. Xxxxxxx

  17. Came home late to Neil in tears…….and read the latest. I flashed back to years ago when the 4 of us were in our Footscray kitchen, fighting over who was going to choose the next CD to play after dinner and many wines. I vividly recall that one of you picked Alison Moyet’s version of ‘Love Letters’ and you sang to each other while slow dancing. It was a beautiful thing to see and I don’t believe love like yours just stops. So I am going to play that song for a bit and send you both my love and light for the next stage of this journey, one we will all face at some point in time. I hope that all of us practise the same grace, generosity of spirit, courage and honesty that you have both shown and shared.
    It is a privilege to know women like you, and I wish this wasn’t happening to either of you. Tracey xxxxxxxx

  18. Oh Caroline. You have been one of the most supportive, wonderful people in my post-babies writing career. Without ever meeting in person I speak of you often and my heart glows with love from your kindness. This should not be happening. Donna you are a truly wonderful woman. I send much love and light to both of you. Big kisses and warming hugs. Love Bianca and my family xx

  19. jesus. my god i’ve been checking your blog 3 times a day for news, but … and … well, you sort of said this was coming but … fuckers. honestly. i’m glad you get to be partners and not carer. i’m glad C is coherent. I’m glad you have some warning and some time. and i think the whole thing is just tragic. and truly saddening. and that this sucks in the worst possible way.

  20. Oh Donna and Caroline. I’m so sad. Having lost 3 members of my family in the last few years, I am there with you. Cherish this time together as you are. I am thinking of you both and sending lots of positive energy and love your way.

  21. Bugger. Des and I send our love. Can’t believe it. Am so sorry. Like others, I’m glad you are going to get support at this time so you can be there for each other. I can still remember meeting Caroline in April 1987 – my first team leader. Haven’t we all come along way since then? Bumping into you guys at that News Ltd Xmas party was a highlight – dancing with you made my night. Thinking of you.

  22. Dearest ladies, you do not know me and I don’t know you ( your blog comes to me via a link from the lovely Angelika… But I want you to know how the honesty of your journal has connected so strongly to me and I just wish it could have the happy ending I originally believed it would have. They say the measure of a person is in how they face death – I see 2 very honorable people. I trust whatever time you have left together will be filled with a love that doesn’t leave space for any hurt.

  23. I felt like I had been hollowed out after I read this. I am so sad that this is happening. I can’t imagine a force strong enough to bring Caroline to sleep 20 hours a day but this has. Thank you for sharing all of this with such honesty. What the two of you share is so rare and so beautiful. Hold on to that love and be selfish in the weeks to come. Let others look after you so that you can spend every moment that you can with each other. Thinking of you always and sending you love and strength. Dig deep and hold on tight. Xx

  24. Donna and Caroline, neither of you know me, but I feel we are connected in someway. I started following your blog after Lisa Wilkinson tweeted about you. I had just lost my MIL to this dreaded disease and I felt I knew every step you were taking. I’m also originally from SA, so knew of the places you wrote of. Please know that I am thinking of you both and I’ve shed some tears on your behalf as well. I hope the time ahead is as peaceful as it can be. xx

  25. Devastating news for you both.. oh Jesus, this is such sad news…I have never known two women to love each other as you both do. life sucks…So sorry that the time is coming for you both to say Goodbye in this life…Feeling sad for you both knowing how you were one in love and life.. Xx

  26. I was introduced to your blog by my daughter Johanna who speaks so highly of both of you. I met you once at a mutual friend’s place one evening some time ago. I was impressed with you then and even more so now. Words are difficult to come by in this situation so I can now only reiterate what has been said before, you have both been an incredible source of inspiration. My mind cannot comprehend what you are going through and all I can wish for is that there will be peace in the end. You have been, and still are, in my thoughts. Sxx

  27. Heartbreaking reading this. You are two of the most amazing women any of us will ever be privileged enough to have had in our lives. Thinking of you always. Love to you both xxxx

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