Wednesday 31 August 2016

Mr B, still in hospital, still smiling.

Life.  An update.

Alan, still in hospital, still smiling.
The inner life

Making space to journey with someone who is terminally ill is best done consciously.  Changes are needed in all areas of the life of the person who is ill. The ripple effect includes family, friends, acquaintances, passers by and all those professionals who take part in this final journey.  Those of us caught in the ripple effect, especially those of us closest to the person who is dying, are required to stop and take notice, slow down, and as far as is possible, become present.

Becoming present, slowing down, being patient.

I have been learning much about patience recently. It has been necessary, and I have been made aware of how much patience is needed in life, if we are to understand and connect with what is happening around us.  I have made a decision to enter a state of patience many times over the last year, and have become aware of what this means. It means that I surrender my time and accept that for as long as is needed, within reason, I have stopped wishing to do anything else but sit where I am. I am learning to step away from time passing as a thing to be watched, and to let go of wanting to do, to learn how to simply be.  A Qi Gong teacher once told me about smiling from the heart, and so I do what I think is smiling from the heart.  This makes the stepping away from time as doing, into a more profound experience of time as being. The idea is that I am much nicer while being, which will come as a huge relief to those around me.

Holding hands in silence with Mr B

On a practical level, when I am sitting with someone who is ill, it is my decision to sit with them, I am under no obligation.  There is often nothing that can be said, and so entering into a state of gentle patience, is a discipline that I am delighted to practice. I remember once, a while ago, sitting through the early hours of the morning in a hospice, and noticing as I took my seat that it was 4am.  These early hours are long and silent and dark, and I remember making the decision to be patient.  There was nothing else I could do, and if I was to sit as I intended, then that was all that I could do.  The morning would come at some point, things would change with the day. Eventually, when I looked at the clock as the morning was dawning, I saw that it was 8am and that four hours had gone by.  Four hours and nothing had changed, except that the day had come, and I had learned a valuable lesson.  I had learned that patience is a discipline, a state of mind, and when it is needed, it is very powerful indeed.  The time spent by that bedside was neither easy nor hard.  It was neither long nor short.  It was a time of silent giving and receiving, a time of respect and love, a time of offering the only thing I could offer in those circumstances, my time and my willingness to stay.  In order to do those things, I had to practice patience.

When I left the bedside at 10am, I was very tired indeed, and needed to take time to come back to myself, to sleep, to have a pot of tea, and to be and do all the things that made me who and what I am.

The same idea of patience was needed in the hospital with my son in law and my daughter, when she was experiencing a long and painful labour with their son.  The hours, the days, so much time passed, and I made the decision to practice loving patience then too.  And in fact, the long hours waiting for a baby to be born were not dissimilar to those long hours by the bedside of someone who is waiting to die.

Practising patience, loving patience and kindness, giving time willingly, and learning to strive for authenticity, are lessons that benefit us in all areas of our lives.  Though I accept that giving time willingly in a traffic jam and practising loving patience and kindness when someone queue jumps, or when our children drive us to distraction is quite something else.  I haven't totally got there yet.  I can still say rude things to people who annoy me. This patience, this discipline of patience, is a state that I am still learning to inhabit, when it is important that I focus and give the gift of my time and attention.  I am, it is, a work in progress.

The outer life

So this is where I am now.  I live in Mr Bedford's little house on the High Street for the while, and I am married.  I am married of course to Mr Bedford, and as such I am now Mrs Bedford.

Mr Bedford is still in hospital.  He is due out in a few days time, and I am here getting the house ready for his return.  When he returns, he will be driven down the little back lane, come in through the back garden full of flowers and colour, he will be helped up some little wooden steps to the decking outside the sitting room, and into his new bedroom in the sitting room overlooking this wonderful garden, and beyond that to the village green, and beyond that, in the distance, to the tennis club where for so many years, he has been and still is, famous as a player, an ex chairman and quite simply for being Alan Bedford. .

Mr Bedford, Alan, my husband, was diagnosed with terminal cancer in April this year, on the very day that my youngest brother, Dominic, died of the same cancer.  For a while, Alan underwent all that was prescribed for him, taking his diagnosis, his chemotherapy, and his failing health in his stride. But there was always pain, great pain, great discomfort, and Alan found that when he was feeling bad, he was feeling very very bad indeed.  And when, somehow, the medication worked, he could get by quite well.

Three weeks ago, Alan and I visited a dear friend. We sat in the sunshine in her beautiful, extensive gardens, eating cake and drinking tea, talking of his illness, and talking of life in general.  We were not married then, and there seemed to be time ahead of us.  Plenty of time, and in that garden in the sunshine we talked of many things while feeling that whatever was ahead of us truly was ahead of us.  It wasn't with us yet.

That night Alan began to experience dreadful pain, such dreadful pain that the next day he could not make it to his GP a few hundred yards from his home, and had to be taken from the street by a kind passer by in a car to the surgery from where he was taken by ambulance to A&E.

Three weeks later, things have changed for us.  Alan is still in hospital, having undergone abdominal surgery that discovered that there is no more treatment for him.  His cancer is denser, there is no more need for chemotherapy, and his life expectancy is drastically reduced.  In this difficult time, on a Thursday afternoon, 18 August, on the ward as he drifted in and out of consciousness, we decided to get married.  Alan felt he may not recover enough to wait for a wedding in the time it normally takes to arrange, and so on Monday 22 August at 9.30 am I collected the special licence from the registry office and at 11.30, in a room made wonderful by Alan's family with flowers, bunting, a full cream tea and balloons, we were married.  My family was there, Alan's family were there, and it was at once a joyful and tearful occasion. Mr B was so ill I had to wake him up to respond to our vows of marriage. I am not, I said with extreme loving kindness and patience, marrying a man who can't look at me.


With our marriage, I have moved into Alan's house and have prepared it for the delivery of his hospital bed and other equipment later today, with a view to Alan coming home at some point soon.  We will begin our married life here, and end it here.  Both of us look forward to our time in this house together.  We know the score, and with help from the palliative care team, the hospice team, the carers and the district nurses, with help from Alan's family and friends, my family and friends, there is much to look forward to.  I spend time each day in the hospital and come home to a quiet little house. Soon Alan will be here, and when he is here, things will change again.  We will enter our next phase of this extraordinary thing called life, and we will see where it leads us next.

My husband and I just after the wedding with grandson George who has no time (or patience) with hospitals or weddings or anything like that, he just wants to bash things.

But George did get to bash Alan's chair earlier on