"My life changing diagnosis and the incredible service provided to me by the NHS in Coventry"
About: Coventry And Warwickshire Partnership NHS Trust Coventry And Warwickshire Partnership NHS Trust Coventry CV6 6NY University Hospital (Coventry) / Oncology University Hospital (Coventry) Oncology Coventry CV2 2DX University Hospital (Coventry) / Trauma and orthopaedics University Hospital (Coventry) Trauma and orthopaedics CV2 2DX
Posted by forevergrateful82 (as ),
I want to share my story, as I have with many people before now, because the health services that have been involved in my life have had such an impact that I will be eternally grateful.
The background is that I am born, bred, educated and have lived all my life in Coventry, and had a fantastic quality of life with a long and happy marriage and a successful career.
3 years ago I started to experience pain in my shoulder blades. I suspected it was due to gardening and/or golf. My GP gave me anti-inflammatory medicine, an xray and a blood test but all came back clear.
A month after this first appointment with the GP I saw a physiotherapist, and then the following month was referred to an orthopaedic consultant. The results from the consultation suspected no serious problems, but an MRI was arranged to be sure. The MRI was scheduled for a month later.
In the next month, my life changed dramatically. My pain increased significantly over the next fortnight. To begin with there was no effect on my mobility but a private MRI was arranged. Before this happened, I began to lose the sensation in my legs and my mobility decreased considerably. An NHS Direct doctor was concerned and arranged for an ambulance.
I went into hospital, had various tests and waited. My diagnosis on the following day was that I had cancer of the spine. This caused thoracic compression, a loss of mobility entirely and incontinence. I was terrified.
I had an operation the following day, thoracic decompression, and a cancer biospy. At the very start of 2010, I was told that the spinal cancer was secondary, my primary cancer was prostate.
I had treatment immediately, radiotherapy and drugs but by now I lost mobility completely, most sensation from the mid chest down, complete loss of bladder and bowel control and loss of independence. All of a sudden, I found myself confined to a bed.
It was an emotional whirlwind, I was shocked, worried and concerned. I was frustrated and experienced serious disbelief. Most of all, I was devastated at the prospect of my future - suddenly everything I'd imagined for my later life with my wife was disappearing and was out of my control. You cannot imagine what facing an unknown future and possibly death does to you.
I recovered from the decompression operation, and had lots of physio. I was transferred from orthopaedics to oncology, I had radiotherapy and drug treatment. There was a delay at first in organising the core care package and I was mentally and emotionally traumatised through this time.
My rehabilitation then began. I returned home, which for me meant joy, security, freedom, friendship, love and progress. The community neuro-rehabilitation team came to my home to work with me. For the first time, I was hopeful. I had a short, medium and long term plan and something to work at. It felt like I was started again from scratch, learning once again to do things for myself. It was strange, and frustrating but I was determined.
The rehabilitation team immediately conveyed a caring, friendly and concerned attitude. They were all professional, knowledgable and understanding, and they were enthusiastic about their work. They were always competent and they inspired confidence, belief and trust.
A coordinated, integrated and committed team then worked with me over the next few months - including physiotherapy, dieticians, podiatrists, physiologists and occupational therapists. They also accessed equipment and other specialists when needed.
We had structured assessments with agreed goals and measured outcomes. I felt I was in incredibly good hands.
I was then transferred for my next phase, with the community physiotherapy team who were every bit as superb and took on responsibility for getting me over the next few hurdles.
The results were that between February and December 2010 I had increased physical strength, weight and mental stimulus. I began moving about in a wheelchair, then using a frame, quads and a stick and eventually got back into driving. I had improved social opportunities, and could once again wash, dress and do domestic activities with some adaptations to my house arranged through occupational therapy. I regained bladder and bowel control, thank goodness!
From a planned, enjoyable, comfortable early retirement I experienced a rapid traumatic life changing experience. It wasn't something that only I experienced, it was felt by my entire family and friends and especially my wife - who has been exceptional.
I could only predict an unclear and possibly unpleasant future as this was all happening to me, but now I am optimistic and happy. My illness has required major adjustments - mentally, physically, emtionally, environmentally and socially, and my wife has been the centre of my world and my lynch pin throughout.
I have experienced:
- excellent medical and nursing care and treatment at UHCW
- excellent physical and personal care in my home
- excellent quality, life changing help in rehabilitation and recovery, in my home
- excellent physiotherapy in my home and in their facility
Without the grace of God and without the community neuro rehabilitation team and the community physiotherapy services team I would not have known where to start, what to do, where to go and how to progress and I would not be where I am today. I would not be where I today without my wife, family and friends either).
I cannot emphasise enough the benefits to the patient having professional and quality treatment in the community.
My sincere and eternal thanks to everyone, and I hope my story will encourage the health services in my area to commission more treatment and services which deliver care to people in their homes.