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.

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