Enhancing the quality of care for patients in all care settings through partnership collaboration, advice and education

Michael’s Story

It came as a pretty big shock to be told that I had prostate cancer and, a month later, after further scans to be told that it had spread to the bones and was probably life limiting.

After the initial tears, confusion and "why me?" questions I tried to rebuild a life around this unexpected illness and the increasing pain and discomfort which came with it.  I was very glad to have support from my GP and from District Nurses and visits from a specialist nurse based at Oakhaven.  However about 2 months after the initial diagnosis, I had reached a point where I did not think I could cope for much longer.  The pain was getting worse, the problems caused by the side effects of the medication seemed insoluble, and life seemed increasingly to be futile and pointless.  The hospice nurse telephoned me to ask how I was and I was able to tell her honestly how I felt. To my surprise and immense relief I was offered a place as an in-patient at Oakhaven Hospice, and I stayed there for eleven days.

I came out of that eleven days better able to deal with my condition, and a realisation that with the kind of help that was available from Oakhaven I could face my future with a more positive frame of mind.  

A dear friend of mine had died at Oakhaven over a year ago, and that was the first time I had an opportunity to see what went on and how much care and support there was from the staff. It opened my eyes.  It was the kind of care we would all like, but all too rarely find.  When I went in as an in-patient that first impression was richly confirmed. To know that, for a while, there was a nursing, medical and caring team who would sort me out came as an immense relief.  It allowed me some time in which to reflect, gather my thoughts, and start to plan for the future.

The care was extraordinary not only because the doctors and nurses were willing to spend time trying to sort out my problems, but also because of the team work.  It soon became clear that although nursing and medical staff changed on some days, they all knew the detailed personal circumstances of my problems, so no time was wasted ( as all too often happens in hospitals) repeating details of illnesses and medication to each new member of staff who arrived at my bedside.

When I was discharged, I was encouraged to join the Day Hospice, and I found that the same loving care and professional medical and nursing support which I had experienced as an inpatient continued in the day hospice.

Friends are curious to know what happens at the day hospice, and are intrigued when I tell them that we start with coffee and biscuits, exercises, a period of rest and sometimes a foot or hand massage broken up with a superb lunch.  Our activities include pottery, making greetings cards, flower arranging, group painting and music therapy and boat trips.  There is also a variety of speakers who entertain and inform us about their varied enthusiasms.  The imagination and sheer hard work of the staff that plan and organise these activities is really outstanding.

What the above description does not include however is the heart of what the hospice provides.  This is the companionship often friendship of a group of people who all face, in one form or another, the same journey.  Knowing that many of our lives are limited and many have to put up with pain and disability seems to make it easier for us to talk to each other, and to understand fully our own experiences and feelings.  It is surprising and immensely satisfying to see how quickly friendships grow up between us.  It is really sad when we lose one of our friends but there is also a sense of relief for them, and the warmth of knowing that they have shared this important part of their lives with us.  I think it gives all of us courage to carry on dealing with our own journey.

Hardly a week goes by when I have not learned something of use.  This ranges from investigation and diagnosis of another condition which is causing me increased pain, to dealing with the side effects of the medication which I take, and information and advice on obtaining physical aids to make life easier and safer at home.

All of us who are patients, suffer from illnesses which manifest themselves in discomfort often pain and sometimes this is disability. Help from the hospice in all these areas is outstanding and would often be enough. But the hospice also recognises and provides help in another equally important but less easily defined area that is the emotional and psychological effects of these illnesses. This is part of the help that I received as an inpatient, and is very much ongoing through the day hospice.  The fact that I can discuss my problems, get help and advice, and be with people who are in similar situations makes the journey less lonely and helps me to deal with life in a more positive frame of mind.

Oakhaven provides a whole network of support.  Specialist medical advice and nursing care are available if needed.  The warmth of the welcome we all receive when we arrive each week helps to dispel the dark clouds we sometimes bring with us.  A bright and understanding Pastor who knocks me off my pedestal when I get above myself, and a sister in charge who's loving care and understanding seem to have no limits.    At home I receive regular visits from two amazing people, a counsellor, who gives me the opportunity to talk through my worries and concerns, and a clinical nurse specialist who brings with her a great fount of knowledge and advice, including knowing when to rap me gently over the knuckles when I get too sorry for myself.

John and Phoebe Coates would be proud of the staff who make their dream a reality.  Everyone at Oakhaven is touched by that spirit of charity and loving care.

Michael died in Oakhaven Hospice on 6th October 2009