Breaking out of the Hospice

Dee and I have had many conversations over the past months about my final days and how best to deal with what might be ahead. I hope that will be understood as pragmatic forward planning rather than some maudlin fascination with my end. We’ve had many conversations about lots of other things as well.

Anyway, plan A was for me to be looked after here at home. However, we were somewhat disturbed by an early conversation with the district nurse team which implied that this option was only open if we were able to accommodate a hospital bed and a commode. That was just too much to contemplate in our lovely wee flat. I couldn’t really see myself lying in the window propped up in my hospital bed, waving at the passengers on the upstairs deck of each passing No. 16 bus, with a commode in front of the fireplace. The commode thing is just horrendous and I am going to say no more about it. We were also slightly uneasy about how the cats would view this new sleeping arrangement, rather suspecting that they would adopt the new bed for themselves.

So we came round to thinking about plan B, which was to spend my last few days (I felt, and still feel, quite strongly that I will know when this time comes, and it’s not any time very soon) in the local Marie Curie Hospice which is just ten minutes’ drive up the road in Fairmilehead. We went for a wee recce last week, taking advantage of the visit for each of us to have a very pleasant relaxing massage. The grounds are lovely, especially at the moment when the cherry blossom is in full bloom. The atmosphere was calm and relaxing. The one fly in the ointment at that point was that the hospice is in the process of temporarily relocating to premises in the Western while they undergo a big refit. But I was prepared to put up with that. One of the big arguments for hospice over home was that Dee would be my partner rather than my carer at that time, and that seemed important.

I’ve been a bit bothered by digestive problems over the past few weeks. It’s characteristic of the progression of my disease, things pressing on internal organs, and on the nervous system that generally helps things to work. I was feeling pretty awful yesterday morning when the district nurse came for her usual daily visit, and she suggested that I should admit myself to the Marie Curie Hospice to try to get my drugs regime sorted. We concurred, got some things together, and arrived there late morning. We were shown into a room with a bed and a variety of chairs, and waited. We waited quite a long time. At about eight o’clock last night, my drugs were changed to an agreed new regime. Dee had gone home to sort a few things, and grab a bite to eat, and came back to spend the evening with me. She left around ten having settled me in my hospital bed, and I spent a reasonably comfortable night in the hospice. Without going into too much detail, I didn’t throw up for the first time in what seems like weeks so that is a definite improvement.

However, in the course of the evening we absolutely resolved that I was getting out of the hospice today. One night was enough. The staff are kind, and well-meaning, and the hospice clearly plays a vital role in the care and support of a vast number of cancer sufferers and their families. But with the best will in the world the care is necessarily institutionalised, and dependent on staff availability rather than immediate patient needs. The nursing staff were not at all sure about letting me home, there was even talk of staying for a week. I don’t have that many weeks left that I wanted to spend one there. The palliative consultant, when we spoke to him this morning, was entirely understanding and supportive of our wishes, and confident that we have the necessary wherewithal to put in place a care plan to look after me at home. The requisite paperwork was completed, and I was declared free to go. So in twenty-four hours they really do seem to have sorted an ongoing problem. Nevertheless, it did feel a little bit like a break-out, and is certainly a huge relief to be writing this from my throne by the window with my view of the hills. Dee is ready and able to continue to provide entirely patient-centred care. She’s there for me whenever I need whatever I want. For as long as it takes. We are back on plan A.


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