I was very pleased to be elected as a Trustee at the Annual General Meeting (AGM) in September 2017; the vote from the members present was greatly appreciated.
I have been asked to write a few words, and as a stranger to the majority of members I feel I should give a brief history of myself, my experience of Paget’s disease, and why I want to be a Trustee.
My childhood began in Woodley, near Stockport (Greater Manchester). As a young boy in the 1940’s and early 1950’s, other than school, I spent most of my day playing outside. The local canal, river, foundry, and dye works, were all places we played in and around. I now wonder if this was where the seed for my Paget’s was planted.
My working days began with a 5 year apprenticeship, working for a Manufacturing Company building overhead gantry cranes and large boilers, some shipped to all parts of the globe.
In my late 20’s, I became the Technical Director for a new Gantry Crane Manufacturing Company. We designed and manufactured cranes for a variety of clients, from steelworks through to incinerating plants.
I later set up my own company with a business partner which lasted 33 years and was mainly to do with cranes and mechanical handling.
I married and we were blessed with three children, two girls and one boy. My daughter and son have both raised funds for the Paget’s Association. My daughter ran in the Cardiff half marathon, and my son cycled in the RideLondon 100 mile cycle event. I am very proud of their achievements.
In the nineties, my wife and I started playing golf. It’s a great pastime but one that hooked both of us and we both had the honour of serving as Golf Club Captains. I lost my wife in 2006 to cancer of the oesophagus; it was a two-year long fight. Two years of very mixed emotions.
For me, Paget’s came on the scene after going to the doctors with a painful leg and knees.
My golf days had become difficult and in the nineteenth (golf club bar) my friends would advise that a knee clean out was the solution. They spoke from personal experience, and after lots of nagging, I finally visited the doctors which was a rare occasion (perhaps it’s a man’s thing).
A referral to the hospital and x-rays indicated two bad arthritic hips and Paget’s in my right femur. My consultant at the time didn’t recommend any treatment for the Paget’s disease. I did have a PSA blood test (a test that can help diagnose prostate problems, including cancer). After more visits to the hospital I was diagnosed with aggressive prostate cancer. It was like a baseball bat hitting me between the eyes. It certainly put Paget’s on the back burner.
Of course the leg pain did not go away and it was two years later that a consultant at my local hospital decided on Pamidronate infusions, 30mg once a week for 6 weeks.
My pain worsened and following a very informative phone call with the Paget’s Association’s nurse, my doctor spoke with my consultant. Urgent x-rays were carried out revealing a pathological fracture which was immediately surgically repaired with a plate and screws.
I had two weeks in hospital and 6 months when I could not put weight on my right leg. With no physiotherapy, there was substantial muscle loss. The fracture took approximately two years to fully heal. Detailed viewing of my earlier x-rays showed numerous insufficiency fractures (a type of stress fracture caused by normal stress upon weakened bone).
I still had two bad hips and a new hip was suggested for my left side, which was thought to be Paget’s free. After a long meeting and an anaesthetic assessment for a new left hip, it was recommended I seek the help of the Association in finding a consultant who was particularly interested in Paget’s disease. Nottingham City Hospital was recommended. This is now a Paget’s Centre of Excellence and I have never regretted the move.
After further x-rays, scans, and blood tests revealed no pagetic activity in the left hip, I was given the go-ahead for its replacement. I still had pain, one bad hip and Paget’s disease. It was impossible to identify which, if not both, were giving me pain.
I have attended the Paget Association’s AGMs since 2010, and on all occasions felt them to be very informative and supportive, with presentations covering all aspects of the disease. With my pagetic history, I have been personally interested in topics relating to hip replacements, particularly with my having a repaired femur (plated screws) along with insufficiency fractures and the non-union of my fracture site. I was repeatedly informed that this would not be conducive to surgery. It was not until the Norwich Paget’s Information Day and AGM in 2016 that one of the presenters recommended a fellow surgeon, who could possibly help me. A referral from my doctor and 12 months on I have a new right hip and NO PAIN, thanks to the team at Nottingham City Hospital. It’s been a long ten years.
I am now retired and have time to give my help and support to the Paget’s Association. It is the least I can do for all the varied and continuous help the Association has given me over the years.