I’ve been asked to contribute to other people’s blogs and websites so thought it was about time I wrote something similar for this site.
I started this blog as an information support for patients and carers, but the posts could also be useful for others, eg the links given regarding screening mammography. I also wanted it to promote my book, Nothing Personal, disturbing undercurrents in cancer care. So here’s a short version of my story and how I came to write the book. I hope it encourages you to read more!
I had cancer of the anal canal in 1990. My chances of survival were 50/50 and treatment was aggressive. Debility confined me to the house for much of the time and I realised how important it was to have something to look forward to each day – a favourite TV programme, a magazine to flip through…I was determined not to look like a grey or yellow cancer patient and slapped on the make-up. Rubbing lipstick into my cheeks gave me a healthy glow and when I looked in the mirror I even felt better!
Afterwards, I was unable to work but had time to look at what I wanted to do for the rest of my life – however short. I knew cancer could come back, but told myself ‘I’m not going to die today!’ I knew I wanted to help people – to do something meaningful and rewarding, but what? I could not explain why I had this need and felt pathetic. There had been so much so wrong with my care, my head was full of ‘playback’, but I was lucky: a government back-to-work training scheme gave me the opportunity to train as a counsellor and this taught me how to deal with stress. This was important as I was also dealing with marriage breakdown. The course also enabled me to take a fresh look at life – ‘what had been my favourite subjects at school?’ and ‘if I could do anything, what would it be?’ My best subjects were art and English. I would have loved to have gone to art college. Friends persuaded me to enquire about part-time courses at the local art college. I was terrified when I went for the interview for a 4 year Diploma course. Applicants were supposed to take along their portfolio. I was a four-times mum with a small-holding. Life had revolved around children, animals and any part-time work I could get to fit in with the daily round. But I took along some thirty-year old scribbles/sketches and a few examples of china painting done at local evening classes – and I was accepted! I was over the moon. I was going to be an art student! In the autumn I became a ‘mature student’ and entered a different world. Just before Christmas, I managed to find a house to rent, applied for state benefits and without any income, stepped into the unknown.
A colleague on the counselling course had asked me to help set up a cancer support group which I later ran for 12 years. I found that providing support and information for others and listening to their stories took my mind off my own problems. My interest in health matters led to an invitation to join the local Community Health Council (CHC -‘the patients’ watchdog’) which had a statutory right to inspect NHS premises. It provided ongoing training and taught me a great deal about the NHS and how it was run, but it was some time before I felt brave enough to raise issues or speak out at their bi-monthly meetings.
I was desperate to raise awareness of cancer issues I had experienced and listened to in the support group. The first opportunity came in 1994 at a conference I’d been invited to (my first) entitled ‘Patient Empowerment’. At the end of one of the break-out workshops someone half-heartedly suggested perhaps we should list issues we wanted to raise. Although it was almost lunch-time, I seized the opportunity and, shaking in my shoes, took over the flip-chart and not only listed issues but talked about each one, giving examples. One issue was ‘too-late referrals’ by GPs. Late recognition of cancer by GPs was so common among support group members I had come to expect it. During the plenary feedback session from all groups in the afternoon this was the only item to get spontaneous applause. It was good to know so many health professionals knew about this, but it seemed no-one was willing to speak out. I did not realise it at the time, but I had become a patient advocate and was later to become a patient activist.
Membership of the CHC gave me the opportunity to speak out at a special CHC meeting on patient transport (one of the issues I had raised with them). It was attended by members of local and neighbouring Health and Ambulance Trusts, the public and press. I’ll just say it felt like initiation by fire. But I had prepared my case carefully and had a file of ‘evidence’ to back what I said – and I did not mince words. To cut a long story short, changes and improvements were made to ambulance transport services.
As the support group lead I received quarterly magazines from cancer charities. One, CancerLink, invited articles from patients. So began my writing ‘career’. ‘Why don’t cancer patients complain?’ set my thoughts in print and was soon followed by more patient issues. It was wonderful to have my writing published, but I realised few health professionals would read it. I rang the local Health Authority and asked what magazines read by doctors and nurses might take a patient story. (I was so ignorant and naïve, I did not know to refer to them as ‘journals’!) The Health Service Journal published my article in 1996. One consultant wrote to me to say she would change her practice and would try to influence that of her colleagues. That was a start! The prestigious British Medical Journal not only published my story in 1998, but gave it a spread along with doctors’ commentaries.
Opportunity after opportunity came my way: my art college was franchised to run a Fine Art Degree course and I was able to step onto that after completing only 2 years of the Diploma course. I became a Trustee Director on the Board of CancerLink, a member of the National Cancer Alliance, and sat on the local hospital’s ‘Art in Hospitals’ group and local Ethics Committee. Later, the NHS Plan and NHS Cancer Plan gave patients a valid voice; service user involvement (carers as well as patients) was embedded in healthcare and what had been a few stray voices crying in the wind became an up-swelling – an unofficial ‘patient movement’. Health conferences became regular dates in my diary, as did speaking engagements and requests for articles in medical journals. I was asked to contribute a chapter to a medical book, ‘What cancer patients need’ in ‘Modernising Cancer Services’ by Mark Baker. I was astounded.
All this makes it sound as if I was bursting with energy! The opposite is true. I still suffered (and suffer) pain and debility, had no stamina and could only do things in short bursts. The good thing was my activities left no time or energy for house work!
As the twenty-first century began, I heard that the Royal College of Pathologists were setting up a Patient Liaison Group and recruiting lay members. Without stopping to think about the terrifying consequences should I be asked to attend for interview, I applied. On the train down to London I was so nervous I wondered why on earth I put myself through these ordeals! But I realised many health issues were national ones and I needed to give input at the top. To my great surprise, I was accepted, became a founder member and later Chaired the group.
Membership of other national organisations, local cancer network user partnership groups and research groups filled my days. I’ve run therapeutic writing and art workshops and currently run voluntary art sessions for members of our local U3A (University of the Third Age).
Other patients often talked about ‘wanting to give something back’ – and people assumed my interest in health matters stemmed from the same need. But it didn’t. Although I felt grateful for my life, I had a need to speak out, to have my voice heard, to influence change. I felt guilty – but realised there were plenty of doctors and nurses who would have liked to speak out and would welcome the changes I sought.
During cancer treatments and afterwards, the turmoil in my head due to communication issues, lack of honest information, paternalism, having nothing to rely on – and things that were unacceptable – had found some release via poems that exploded night after night around 3.00am as I tried to piece things together – things I’d been told which simply did not add up. (This was ‘therapeutic writing’, though I did not realise it at the time and had not even heard of the term.) I called the collection ‘Vinegar and Brown Paper’. A friend put some to music and we made a CD which we sold for charity. They lay shut away for years, but professional colleagues at the Royal college of Pathologists were so patient-centred, I dared to ask some doctors and others if the poems could be useful in medical education. The response was so positive I plucked up courage one day and sent a few to a medical publisher. I explained how I wanted to structure a book around the poetry collection, telling my story in prose, but with discussion sections after each event looking at how it had made me feel, what needed to change and research references for better/evidence-based practice. (I wanted it used in medical education, to raise awareness among health professionals, but also to be a sort of reference book for patients and carers, so they could know what standards they should expect.) Their Commissioning Director came up to York, took me out to lunch in the famous ‘Betty’s teashop and signed me up! I was so shocked I could not sleep for two nights and could write nothing for a month.
The book has received acclaim in major medical journals; Macmillan Cancer Support hailed it as ‘a landmark for the patient voice’, Exchange 2008; it was given as a prize by the Royal College of Nursing; and was a winner in the Medical Journalists’ Association Open Book Awards 2009. The judges pronounced it ‘unputdownable’ and said they were ‘not usually enthusiastic’ about patient narratives, but stated that ‘Nothing Personal’ was the exception. They described it as ‘funny, poignant, thought-provoking but above all it’s a wonderful read.’ Still lacking confidence and unsure if I could really write, I could not believe they were referring to my book.
I still can’t believe how cancer changed my life, but it turned adversity into opportunity. It took me into a bleak forest, but there were secret paths for me to find. One led to another and each opened doors.
‘Nothing Personal, disturbing undercurrents in cancer care’ Radcliffe Publishing, ISBN 978-1-84619-010-0 can be found on many websites such as Amazon and Tesco online, or by Googling the title or my name.
NB This is not a profit-making advertisement – I am in receipt of state benefits and any royalties will be deducted from my Pension Credit, which will probably make me lose other benefits such as help with hospital transport. I just want to promote the book so that other patients will not suffer unnecessarily.
Copyright (c) Mitzi Blennerhassett