During Annie’s second bout of time in hospital early in the month, a nurse whispered “Has your wife come to us from the hospice?” It was nearly midnight and they were in the process of moving Annie from one ward to another. I was tired and burdened with luggage as I followed the porter – but I smiled and replied, “Yes, she has.” The nurse frowned sorrowfully and said “Aaaah, that’s sad.” I know it was late but I had to break the whisper and the myth. “No. It’s not sad at all. It’s a really special place.” What was really sad was being in hospital – being rolled through the warren of corridors at midnight; but unlike the nurse, I exercised a little sensitivity.
No doubt I’ve used a similar phrase in previous posts, but the hospice movement has a stigma attached to it; and those who care for patients within it, patiently attempt to remedy the misunderstanding of those without it. It’s not just a place where the terminally ill come to spend their last days and hours.
During the latter half of December 2012, Annie spent the first half of a two week ‘break’ (with a short ‘stay’ in hospital in between) at the hospice. I often heard Annie ask the hospice doctors and nurses “Am I outstaying my welcome?” and insist “If other people need this room more than I do, then you must give it to them!” She was especially concerned when they promised to hold her room for her while she spent a few days at the hospital for the drain procedure. But the facts were that of the sixteen available in-patient rooms at the hospice, very few were actually occupied at the time. This really surprised us!
UK cancer stats alone inform us that (2010 data) 430 people a day die from cancer (that’s one every four minutes); and having spent endless hours in many waiting rooms of various oncology wards and chemo clinics, we know that at any one point in time in our city there are (at the very least) always sixteen people who are suffering from the same kind of cancer that Annie has. And then there’s the many other terminal illnesses and life limiting diseases and sicknesses which are ‘out there’ – and are cared for within the embrace of the hospice.
The hospice nurse whom we queried was less surprised by the vacancies. “Of the people we care for who die, few die in the hospice; as they wish, we continue to care for them in their homes during their last days. But then yes, there’s also the stigma that’s attached to hospices which keeps people from wanting to use it.”
I can’t help but think that as the awareness of cancer increases, there will be a commensurate increase in awareness and uptake of the services and care of hospices. And for what it’s worth, our shameless plug: the care at St. Richard’s Hospice is so good that when the hospice doctors and nurses came to talk to us about the planned departure on Tuesday, Annie fought hard to bottle the emotional blend of tears; happy to be returning home, but so very sad to say goodbye – to our room, its view and setting and to the many staff who – if it wasn’t for the uniforms and lanyards – might just be mistaken for one of our many visitors among friends and family.
Their standard of care and hospitality remains the one I aspire to. Annie has been back home for three days now and I have learned to manage those transitions by trying to match the pace and routine that Annie had before she returned home. Her medicine regime has increased slightly. Annie now takes two forms of morphine in pill format – one for continuous effect (Oxycontin, 20mg) which she takes twice daily and another for as-and-when (Oxynorm, 5mg); these sit alongside a pill platter of Paracetamol, Ibuprofen, Omeprazole and a Dexamethazone steroid on an as-and-when basis (the reason I record this detail is because these blog posts make for a useful reference of Annie’s medication history!) I’m a firm believer in the idea that – like wine, greetings cards and songs – there’s a spreadsheet for every occasion; I’ve produced my own little weekly spreadsheet printouts to assist me with the scheduling and administering of these many pills. And, if I do say so myself, it’s working pretty slick!
At various points in the day (at the moment it’s the late night and early mornings) spells of nausea and pain seem unavoidable but for the most part, things have been going well. At the moment Annie and I have an unusual breakfast date which happens at around 3am every morning (so far). Most probably triggered by the occasional steroid which always causes Annie to feel hungry, I now join Annie for a bowl of cereal at moonlight. I don’t have great coordination at the best of times and so going downstairs to make breakfast when I would ordinarily be sleeping is the first challenge of the day. However, indolence is the teenage son of invention; using a piece of string and some cling film (saran wrap) I prepare and cover two bowls of cereal each night before bed, leaving the carton of milk resting (that’s where the string comes in) in the lingering piles of snow on the flat roof, immediately outside the spare bedroom (where the cereal sits and waits on a bookshelf!) Right now I am just glad that Annie’s midnight craving stops at cereal; without an IHOP or Denny’s in the UK, pancakes and waffles are so very hard to come by at that hour.
Various pictures documenting the last few weeks will follow shortly.
In His Hands and Care,