Where I live we don't have Macmillan nurses. Instead we have CNS's who are part of the Hospice at Home service. For the last year or so, I have not seen the need to bother my CNS, although I had met her once or twice. Then she retired and was replaced. A couple of weeks ago, I felt that the time had come to make the acquaintance of my new CNS, so I arranged an appointment with her. She was very kind, patiently listened to my woes and mopped up my tears. I never normally cry but it felt like such a relief to talk to someone whose sole job was to listen to me. The upshot of this meeting was that she referred me to the day centre at our local hospice. And today I visited there.
I felt quite emotional driving down the drive to the hospice. This is the place where I want my life to end, but it was peculiarly frightening to actually go there and see it. It's a lovely, peaceful place surrounded by beautiful gardens. I parked in the car park, wiped away the tears that kept welling into my eyes, and bravely marched into reception. There I was greeted by a lovely, smiling receptionist who called up the nurse who runs the day hospice. She in turn led me into a room that resembled nothing so much as the lounge of an old people's home. My heart sank, I'm afraid. I was offered a cup of tea or coffee, but when I asked for a herbal tea this completely threw the nurse - they had no such thing. I settled for a glass of water, and we sat down in the forbidding circle of high-backed comfy chairs. You know the sort of thing. I have walked past enough old people's homes and, glancing in, seen similar chairs being occupied by residents who are either snoozing or staring vacantly at the telly high up on the wall. And indeed, there was a telly high up on the wall here too. Is this what I have become? I thought. The nurse explained what they have to offer - a full day's visit on a weekly basis which seems to consist mostly of rather a lot of sitting around in the aforementioned chairs having tea and biscuits, interspersed with complementary therapies and the opportunity to see the palliative care doctor for symptom control. Although I do want to access the therapies and the doctor, I'm really not sure about this weekly commitment. I feel very uncomfortable about it. Perhaps I'm not ready. Perhaps I'll never be ready. I quite understand that for some people it's a lifeline, the only time during the week that they get out of the house, and that the opportunity for them to meet with other patients must be very valuable. I voiced my fears, and we agreed that I should come in September for a trial run, after which I could decide whether it was for me or not. I also found myself offering suggestions: how about a Tai Chi class? I know of a teacher in the area who'd be happy to oblige. And what about a singing group, or an art class? I think the nurse was a trifle shocked that I should be suggesting improvements before I've even started!
She then took me on a guided tour of the rest of the hospice, and I was enormously impressed. I've never been in a hospice before, although of course I have heard about them from other people, and indeed have been raising money for this one for years. The first thing I noticed was that all the staff were smiley, and there was a noticeably cheerful atmosphere about the place. At the same time, it was quiet. So different from a hospital. My guide explained to me that the nurse:patient ratio is much, much higher than in a hospital, so that care is always there when you need it. They only have room for 16 in-patients (in a catchment area of what I reckon must be over a quarter of a million people). 50% of the in-patients are there for short-term symptom control and 50% for end of life care. I was shown a typical room, all of which look out onto the garden, and there is a patio full of flowers where you can sit outside. I saw a dog in the garden chasing a ball, and, with the old tears welling up again, asked whether patients' pets may come to visit. The answer was yes, they can, which struck me as a very positive and humane policy. There is a non-denominational sanctuary, which I declined to visit, courtyards with fountains, bright day rooms with comfy sofas (just the regular type, not the residential home type), jigsaw puzzles, bookshelves full of books, paintings on the walls, and lots of daylight everywhere.
I came away from the hospice feeling that I would be very lucky if I was able to end my life there. However, I reserve judgement about the day hospice. I think that, on balance, it's not for me, but I will give it a go anyway.
There is light at the end of the tunnel (so to speak!) with regard to my bowel problems. The Christie has offered to refer me to a gastro-enterologist who specialises in post-radiotherapy bowel damage. I was given the work-up by the great Dr Andreyev at the Marsden last spring, but sadly the treatment didn't help. Anyway, that was over a year ago and things have changed a lot since then. Also this new consultant is in Manchester, which is a lot easier to get to than London. Finally, last weekend in a state akin to despair, I rang the Macmillan helpline and was given some extremely helpful practical advice by the nurse I spoke to there. So I continue to live in hope.
