It started in the late 1970s. I was finding fault with every tiny thing and felt very irritable – a lot!
This progressed as my children grew up. My daughter Emma was about 14 and told me she was going to a nightclub, with her mates. I lost it! Much over-the-top shouting and ranting at her – my wife Sue, calmed me down. However, this conflict, my daughter’s puberty and my symptoms gradually became worse as the years went on. Sue had even given me an ultimatum that she was leaving me and taking our children with her.
I was in my local pub with some good friends, just chatting. Two men walked in and one accidentally barged into me. Without so much as saying something to him, I punched him and knocked him out. I was barred from the pub for six months. The next day I thought to myself “Why did I do that?”
In 1980, my Dad died aged 54. There was a lot of turmoil around this for me and it was almost a culmination of the past years’ weird behaviour I’d been struggling with. Meanwhile, others had started to notice the size of my hands, often saying “Look at them!” Panic attacks became common now – even to the point of going to A&E several times as I thought I was dying. I was driving a van through the Mersey tunnel and drove straight across the lane – prohibited in this tunnel, but I didn’t have a clue as to what I was doing (a panic attack was in full force.) My friend in the passenger seat, took over the drive home and I collapsed in a heap in the hall.
One Saturday afternoon, I was watching TV and started crying. Sue called our GP out (we’d been cared for by this GP for years) and he took my blood pressure. It was raised and he said he’d give me tablets. About three weeks later, on a Sunday afternoon, I was crying buckets and shaking. The GP came out again, took my blood pressure and then asked Sue “Is this the same as a few weeks ago when I came?” Sue told him it was, and my GP told her he wanted to have me taken to a mental health unit for six weeks and to have electric shock treatment.
Sometime after this, I had a fall in the factory I was working in, hurting my back, so I went to see my GP. There was a locum GP covering – a young lad, who looked like Art Garfunkel. The locum got up to check what my GP had already prescribed in the filing cabinet near where I sat with my hands folded across my legs. The locum stared at my hands, then grabbed them in his, asking “Where did you get these hands from? I replied, “I’ve had them all me life.” The locum said that something was wrong and would I run with him on this? He sent me to Walton Hospital to have bloods done. A few days later I saw him again, and he wanted me to go back to Walton for a pituitary function test. I was there all day being tested. I also met Professor Geoff Gill there for the first time – he became my endocrinologist and I’ve been very lucky to have him care for me.
The locum then made a further appointment for an MRI scan – I asked him “What of?” He replied “Your brain”. Then came the appointment to see Mr Foy, a neurosurgeon. The locum, explained that a pituitary tumour had been found and said “We are sure you have acromegaly.” The locum had been looking things up about acromegaly over the past 10 weeks since I’d first seen him. I saw Mr Foy, who confirmed my tumour was a considerable size and that he needed to operate as soon as possible – it was only a few weeks to wait.
So, I had my surgery in summer 1994 and, despite having a CSF leak which caused me to lose feeling in my legs and I couldn’t walk for a few weeks, I was able to return to work.
I felt calmer and better. I felt for all these years I was a horrible person, but now felt like the curtains had opened. I went around and apologised to everyone I’d hurt.
My journey and experiences are the reason I do what I do for ‘Pit-Pat’. I don’t want anyone to go through that unsupported. I joined the Liverpool Support Group in 1996 (the second meeting after they launched) and have only ever missed four meetings in 22 years. My Sue is treasurer for the group too. At Liverpool Support Group our motto has always been ‘You’ll never be alone’ and we aren’t. I’m also a Telephone Buddy for The Pituitary Foundation, supporting others on the phone who have acromegaly.
Once I retired, I trained to become a volunteer end-of-life companion in Aintree University Hospital, where I also volunteer in the trauma wards, making sure patients and staff have refreshments. I assist junior doctors with diagnosis sessions when needed – I always show them my hands!
I hope I give something back, for all the help and care I received. Thank you to Sue, my children, Prof Gill and Mr Foy.