The ‘H’ Word
Even before I saw the Hospice I had fantasised my escape. I would need to ‘requisition’ a motorcycle, and like Steve McQueen in the Great Escape I would launch myself and my trusty Triumph steed over the twelve foot barbed wire fences to reach asylum in neutral Switzerland, or in my case Buckinghamshire. I was so enamoured with the legendary film stunt action, I completely forgot that the ‘Cooler King’ ends up entwined in the barbed wire like some feckless teenager starring in a Youtube ‘Epic Fail’ reel, and is recaptured by his German pursuers before being returned to solitary confinement at the hospice, er, I mean prisoner of war camp.
Like most people, for me the mental image that came to mind when faced with that word, ‘Hospice’ is not a good one. At worst, an abattoir where a conveyer belt of human end product is processed like some morbid cross between a Nazi death camp and the Generation Game. But au contraire! It’s been like a week at a health spa. Okay, that’s all going a bit far, but if you don’t recognise my writing style as hyperbole by now…Well, it’s my thing, isn’t it? (I like to call it hyperbollocks!)
Let me rewind to last Thursday. I woke up in pain. For those of you that have read much else of The Big ‘C’ Blog, you’ll know by now that I get two different types of pain from my unwanted symbiote. Until recently, the day to day pressure around my right lung has been really nothing more than an inconvenience, and it has been well controlled by some fairly low level drugs.
Well, things, as they tend to do with cancer, have moved on. What was an annoying ache has reached the point of where it has taken control of my life. Over a relatively short period of time I have had to increase my medication both in potency and quantity to match the spiralling decline in my health.
Ever since my diagnosis, there has been a voice that justifies, “Eamonn, you have cancer (and by all accounts, one of the more painful varieties), you are going to suffer. Get a helmet and accept it.” I mean it’s just logical isn’t it? In the other ear, I have an endless queue of health professionals telling me, “Eamonn, you don’t have to be in pain. We can do something about it.” So I don’t know why I insist on this masochistic self flagellation.
It’s time to start listening. I’ve never been through this experience before and these professionals work with it everyday. Nevertheless, when my MacMillan nurse says to me, “We have two options: I can work with you at home to build a pain management strategy that may take some time to optimise; or, and this is my strong recommendation, you spend a week or so in the local hospice and do the same, but surrounded by the most experienced doctors, nurses and secondary health care providers in a strictly controlled environment where they have instant access to any and everything you might need…” I reel in shock and horror. She said the ‘H’ word. Why is she using the ‘H’ word? I’m not ready for the ’H’ word yet. I can see in her face her own discomfort using it.
From my description and my physical reaction to it, my wife Sarah tells me that she thinks the pain I suffer is similar in nature and intensity to labour pains. The problem is, this isn’t going to go away. I have reached the point now where I am swigging Oramorph (a liquid morphine solution) like an alcoholic continuously topping up from his hip flask. I can’t carry on like this indefinitely; I need to do something about it.
Before I know what’s happening, I’m told there is a bed available immediately at St Francis’ Hospice in Berkhamsted, half an hours’ drive from the security of my familiar, safe home. I don’t want to to go. I don’t want to spend a week away from my family and everything I know, but I know it is for the best. Packing a bag full of loungewear and more electronic gubbins than the Gadget Show competition, we drive off. Other than directions I don’t say much on the journey, I’m dreading this.
We arrive at an expansive, open, modern looking building in a semi rural location, and I am shown to my room. Hang on, my room. That’s a good start. I don’t know why, but with everything moving so fast I hadn’t the time to think it through. The last time I stayed in a medical facility was on a public ward at Harefield hospital for my chest drain two and a half years ago (when they first diagnosed me with cancer). As caring as the staff were, the experience was horrible on every level. Five days of Hieronymus Bosch Hell. Trapped and helpless. I’m sure many of you have had the joy of residing on a NHS hospital ward before. You may have had a positive experience, but others will know what is like to be kept awake all night by the sounds of despair; people sobbing, or crying out in pain, or vomiting, or worse…
“I have my own room, with it’s own toilet. Is that a TV on the wall? Freeview you say? What’s that? The door to my own patio area? Hey Sarah! Look out here, look at the gardens. They’re beautiful!”
This can’t be right. It’s nice here.
Let me explain, I am a homebird. I like the comforts of my own environment. I have worked hard to ensure everything is how I like it. So much so, that when we go away on family holidays I get homesick after three days. It doesn’t matter where we are or how wonderful it is, within seventy two hours Sarah is looking at me, shaking her head, “You want to go home don’t you?” I’ve been here a week and there hasn’t been a moment where I felt I want to leave. That is very unusual indeed.
This is a hospice. This is where people come to die isn’t it? It has to be a sad, depressing place, surely? Actually, despite all my expectations, it is not. Apparently 60% of in-patients are admitted, like me, for pain management, or for respite to give carers a break. Sure, the other 40% come to spend their last days here, and I’ve seen that process play out, but it is managed with such care and respect that it feels completely appropriate and dignified. In fact, having spent a week here has made me reconsider my ‘end of life’ plans altogether, but that is a topic for another day.
My son and daughter have both been to visit me and have felt comfortable and happy here. There is a nature trail that runs around the back of beautifully tended gardens with secret nooks and crannies. These include an enchanting natural clearing with a big blue story telling chair facing an audience of logs and tree stumps; and at the end of the trail, a bench with a glorious view of the rolling, verdant English countryside. I know we English like to complain about the weather, it’s the only sport we are unequivocally World Champions at; a title we’ll never surrender. However, for those three summer months each year, I’d match our exquisitely beautiful countryside with anywhere in the world.
The place is lovely, but even so is surpassed by the people. The level of care and support is astonishing. The first day here I spent two hours with a doctor talking through my illness and that has been followed up with lengthy daily reviews. The average NHS GP appointment last twelve minutes, (although I have a great GP, so mine always go on for far longer.) Yes, I am bored of going through the minutiae repeatedly, but this is critical to ensure that we get a working pain management strategy in place. When I walk out the door at the end of the week, my time here will not have been wasted.
At every change of shift the nurses and healthcare assistants introduce themselves and let me know who will be looking after me. So far I have been visited by a social worker, two family support counsellors, a physiotherapist, two chaplains (always my favourite!), the chef, a masseuse, a pharmacist, an occupational therapist, and a partridge in a pear tree. I have probably forgotten someone in my medicated fuzziness, but not only is this team of caring professionals supporting me, more importantly, they are also supporting my family, and will continue to do so after I am gone. I haven’t even spoken of the army of volunteers, from the garden to the kitchen, without whom I suspect the whole place would grind to a halt. Did I mention that all this is provided free of charge? And that 80% of the funding for the hospice is provided through charity donations?
As I write this now, I feel not only completely pain free, but for the first time in as long as I can remember I cannot even feel the cancer. Normally there’s always a sense of pressure inside my chest even when it doesn’t hurt. I feel totally confident in my new pain management strategy and drugs, and know I can take this away with me providing me with a hugely improved quality of life. That said, none of this affects my life expectancy, but what it does mean is that I have wrestled back some control from that bloody tumour and I can make the most of the time I have got.
So it looks like I won’t need to hotwire a motorbike from the car park after all, which is just as well as, despite several hours on Grand theft Auto V, I really wouldn’t know where to begin with such a criminal endeavour. I’m trying very hard to reach middle class level before I pop my clogs you know, so instead I’ll just give it 5 stars on TripAdvisor!