Julia Franklin from the UK contributes to this month’s Palliative Stories – the EAPC’s blog series from the perspective of patients and family carers.
Julia has had a long and distinguished career as a palliative care social worker, working first at University College Hospital, London, and then setting up the first social work post at St Barnabas’ Hospice in Worthing, where she also offered clinical supervision to staff in local hospices in Sussex for several years. Here, Julia explains what it’s like to change gear from health professional to patient.
After a long career in palliative care from 1982 until 2013, I finally started to make plans for my ‘retirement’. I went to see a surgeon about my haemorrhoids (first things first!), and went into hospital for a haemorrhoidectomy on 30 December – lots of jokes about celebrating the New Year on a cushion …
I came round feeling very bright following the anaesthetic, mainly because they had not carried out the planned operation. I was interviewed by a gynaecologist who diagnosed a grade 3 ovarian cancer that needed gynaecological investigations. I was booked in for immediate chemotherapy – eight sessions if I could manage it – and a total hysterectomy. So, in one fell swoop, I became one of the patients I had supported during my career.
Breaking bad news
Something I shall never forget, and will always be grateful for, was my meeting with the surgeon who was going to carry out my hysterectomy. Sometimes surgeons are not known for their sensitivity for breaking ‘bad news’ but he gave me one hour, stroking my arm the whole time whilst telling me the best and worst case scenarios about my future. I wanted to be told the truth so I knew how to plan. I didn’t ever meet him again on my journey (I was unconscious on the operating table!), but for me having the bad news broken so sensitively was really important and an experience I shall always remember.
Becoming a patient
Because of my prognosis, I applied for Attendance Allowance (a benefit payable to people with severe disability or applied under ‘special rules’ for those with progressive illness). My application was successful and I was pleased that the letter of confirmation was so sensitively written and so much improved from that which was sent to people in the early days of palliative care in the community. I, along with colleagues, had led a campaign in those early days to change the wording of the documentation for people with progressive illness. It took a very long time to convince the decision makers to make the changes – but we did enough to be invited to 10 Downing Street (the official residence of the UK’s prime minister) to meet Sir John Major, the prime minister at that time!
So my experience of becoming a patient, living with an uncertain prognosis, undergoing eight sessions of chemotherapy, losing (and regaining) my hair, and living with an ‘uncertain’ future, reflected very much the lives of those people we had tried to campaign for and support in the early and later days of my career.
The transition from being a ‘professional’ in palliative care to becoming a patient was not always an easy journey for me, partly because I could see how stressed and short of time the professionals running the clinics were, including the chemo-consultant. My earlier work in a London hospital, and more recently offering clinical supervision and support to staff working with terminally ill people, made me wonder what support the staff could be offered for themselves, especially now that there is such financial pressure on the National Health Service. It was thus sometimes difficult for me to ‘behave’ as a patient.
As I draw to a close, I realise I have so many thoughts and ideas, based partly on my experience of most unexpectedly becoming a patient. But I owe a great deal to the fact that my cancer was discovered in time… I have had time to ‘put my affairs in order’. So many of my ex-colleagues have been very supportive and have been able to give me good advice. My family has rallied round us both (my husband was diagnosed with Alzheimer’s amongst all this); and above all I thank the Lord, if there is one, for giving me such a keen sense of humour and a sense of the ridiculous. It is all par for the course and part of life’s rich tapestry and I shall have learned a lot about ‘living with uncertainty’.
Read more ‘Palliative Stories’ on the EAPC blog
Next month, we shall be publishing another story in this series. If you missed the previous posts please click here.
If you have a patient, or a family member or friend, who would like to contribute to the series please contact the editor.
A message from the EAPC
We would like to thank everyone who has kindly contributed to this series of ‘Palliative Stories’. In publishing patients’ and families’ stories we are aware that content may sometimes focus only on one side of the story but we hope that the stories will help us all to better understand people’s palliative and end of life care experiences. Unfortunately, we are not able to give advice or comment on individual cases but we share in the distress that our contributors have experienced.