Jon O

Jon O'Neil

This is my story. It covers the trauma of my brain tumour at the age of 44 from my initial seizure, its problems, re-emergence and my life to date at 50.
My Story

The reason for recording my story is twofold:-Firstly to document what has happened to me and my family in the last seven years, which, hopefully will show some resonance with others in some shape or form and enable them to understand what others go through. Secondly, to draw a line under certain aspects of my brain tumour so that I can move on!

At the point where my story starts; the most important people in my life were my wife, Julie, and my two children, Daniel and Shauna. I had completed 25 years police service in various ranks, roles and locations – all being operational. I had studied and achieved a BA Honours degree in Organisational Studies and had attained the rank of Chief Inspector, regularly acting up in the rank of Superintendent. I have had numerous experiences in my life, which looking back on are too many to document, but they have shaped my life in many ways. Welfare matters and seeking to make a difference has constantly been my mantra both in my private life with my family, my working life or through voluntary work with Round Table.

This was all thrown into turmoil when I was first diagnosed in September 2005 with a grade two Astrocytoma at the age of 44. I was on holiday with my family in Crete at the time and having a smashing time, despite spending a fair amount of the holiday in preparation for my Superintendent’s promotion board which was planned on my return. I had driven all over the island and felt no ill effects at all. On the morning of the last day of the holiday for no apparent reason I felt quite unwell. Then, on the transfer coach back to the Airport, I had my first ever seizure. Due to our being one of the last pickups there was a shortage of seats, the kids were sat towards the front, my wife, Julie, was further down the coach and I was between them, seated next to a total stranger. This seating arrangement made it worse for my family. The seizure resulted in my being totally unaware of anything around me. I am told that people’s reactions varied. Some thought I was drunk until it became apparent that I was ill. It is fair to say that everyone was wondering what was happening and my wife, who was a few seats away, shouted for people to help and get me out of my seat and into the recovery position. I was manhandled onto the floor.

An ambulance was summoned and once it arrived they took me to a clinic in the centre of Crete. My family joined me later and had an extended stay in Crete until my condition was stabilised. The Doctor was excellent and did his best to reassure us. To ensure that I was stable before air travel I was required to spend a total of eight nights in the clinic until I could be flown back to the UK. The journey entailed three chartered flights, being accompanied by a qualified Doctor. This was my first experience of first class lounges but I have to say I wish I’d never had the experience. On arrival at Manchester Airport an ambulance was waiting to take me home.

My wife had prearranged a visit to my GP who referred me the same day to the care of a neurosurgeon, a Mr. Van Hille. Within weeks, after various tests, I underwent a Craniotomy and debulking operation where a tumour the size of an orange was removed. It was thought that this had been growing for years without any side effects until that fateful day when I had that first seizure. After a period in intensive care I was sent home with weakness in my right arm and considerable speech difficulties, I could not read words out loud and numbers were a great problem.

I underwent intensive speech therapy and, through my private insurance, I was able to have 1 to 1 sessions to start building my vocabulary back up again, however numbers remained a significant problem. In the early stages I had issues in being able to string two words together; in my head I knew exactly what I wanted to say, but I could not get the words out or could not get the right words out. One of my first conversations with my then boss related to my tumour but I could only get the word ‘tuna’ out of my mouth! One of the many examples of what I had taken for granted.

In the early stages of rehabilitation, dexterity in my right hand became a great concern to me. I recall on a trip to the Christmas fair at Harewood house, whilst walking through a tent I dropped a £20 note. An honest gent walking behind me picked up the money and gave it back to me. From that point on Julie started walking behind me and made sure that I had only limited funds in my possession to avoid any repetition.

During my recovery many issues that I took in my stride are not worthy of mention. However, there are some that if I do not mention it would be remiss of me. Like many in these circumstances there was the question. “ Why me?” I feel that I have overcome those thoughts and am now positive in my attitude. Some of my experiences will resonate with others. Originally I had many very dark days. I still have some dark days but now they are considerably fewer. In the early days it was not seeing my children growing up to become adults and becoming self-sufficient that concerned me most.

I was very concerned that everything was beyond my control and I was worried that by raising these thoughts with my wife I would be putting extra pressure on her. The same applies to some relatives who were clearly distressed and had their own issues and problems so I tried to hold things together as best I could. I was fortunate that through the Police Federation I had access to a company called Red Arc who had counsellors with in-depth oncology nursing background. Their knowledge wasn’t a magic wand, but they knew where I was coming from and helped me find my way through the maze. They helped me deal with the anger that I felt with some of the people, whom I thought had let me down or more importantly had let my family down because they had not been there for us. It is also important at this point to note that many people who I least expected did come to support us.

In December that year I started using the computer again writing letters that took me hours. They were only short letters and prior to sending them Julie vetted them. It is fair to say that she had the patience of a saint as she corrected them. On Christmas day my emotions got the better of me when I saw my daughter in a grown up dress. I hope it was not too obvious. Again, I had sadness balanced with happiness and I wanted the world to know, so I decided to obtain a dedication on the Steve Wright’s love songs on a Sunday. In the New Year I set about writing to the Steve Wright’s love songs show with a view to being included on one of the Sundays around Valentine’s Day. I thought that in the circumstances I stood a good chance although I’d never tried for a dedication previously. For four weeks I listened intensely but heard nothing – what a waste of time - never again! It was only when sorting through some papers when I finally retired six years later that I found a copy of what I had sent to the show. It was total gobble-de-gook – no wonder it was never played – perhaps I will try again!

They say you find out who your friends are in a crisis! In the early days I was particularly upset about a close male friend and colleague whom I thought I could count on to help support me and my family in the event of anything happening to me. He disappeared off the scene as soon as he heard about my condition. He never called to ask how I was doing. This was so unexpected and I felt so hurt, a sense of loss and bitterness as to how this friendship had ended after years of always being there for one another. It is not an experience I would wish upon anyone. This also made me question my trust in people. As mentioned previously, I was pleasantly surprised how many other people had come up trumps and rallied round to support me: I had to use the answer machine to manage the many, many phone calls that I was receiving from well-wishers

Whilst recovering, some individuals who came to see me were supportive, but clearly did not anticipate me coming back to work at all. This option never entered my mind and when my line managers came to see me they were supportive of my return to work as were the Force Surgeon and the Command team. Initially I did not have my Driving Licence so I started working from a local station to which I could walk in 10 minutes. I then got a lift to my office. This lasted two weeks, because I found I was shattered by having dialogue from the word go on arriving at the local station and during the journey to my office, rather than arriving at my office refreshed and ready to start work. I therefore started catching the bus and I found myself arriving at my office fresh and ready to start. I began on reduced hours and built them up. Before long I found myself regularly being chased out of the office by my boss, for my own sanity and wellbeing, as I was exceeding my normal working hours even for me. As previously mentioned, numbers have been a significant problem – to aid this I played Sudoku every day on the bus – I made it my mission to complete it before getting to my destination (ten minutes).

I secured the return of my Driving Licence which actually came through the door on my wife’s birthday; however that same day I had the second seizure which resulted in the immediate return of my Driving Licence back to the DVLA – without even the opportunity to turn a wheel. It also resulted in my being prescribed Anticonvulsants which has continued to this day and has a story of its own. It entailed many, many drugs, with all sorts of side effect. This second seizure over the weekend and resulted in an overnight stay in hospital, but I did remain at work and continued as a more or less fully operational Chief Inspector, with the responsibility for a large division. My ability to perform to the required and necessary high level was never doubted. Some report writing was supported by the assistance of secretarial staff.

The support that I received enabled me to concentrate on getting back to normality because it was clear some people, whilst supportive, thought I would not get back to my previous role at all. When necessary I continued using the support of Red Arc and my line managers monitored my working hours to ensure I did not over exert myself. When I returned to work, fully supported by my family, friends and colleagues, I wanted to slip back into work as seamlessly as possible. To some it may have appeared that I did so, but I noticed, as did others, that I became extremely tired very quickly and struggled more than I had expected.

By the following year, once I had regained my Driving Licence again, knowing that promotion was now out of the question, I asked to move to a different role so that I could maximize my potential and move forward without the background of the past two years of dealing with the brain tumour. I was successful in securing a move to training and development where I felt I could make a significant impact and make a difference to the performance and wellbeing of individuals, departments, divisions, the force and the public. I took charge of significant areas of training in the Force Training and Development Department including Firearms, Public Order, Driver, Quality Assurance and latterly Crime.

At the same time I started planning a sponsored cycle ride from John O Groats to Lands’ End with my son and brother in law. I also started to pull together a team for a Dragon boat charity event. Training for the cycle ride was on schedule and all accommodation was fully organized. By the end of April 2008 the only thing to be resolved was the final plan for getting to the start of the ride at the end of July, which we were discussing during a training ride to Bolton Abbey one weekend. However, both Daniel and I failed to negotiate a bad bend in the road and came off our bikes. Daniel injured his left arm and I broke my left wrist which was compounded by the fact that I had previously fractured this same arm in a motorcycle accident years before. After four days in hospital, over a bank holiday, but only one day off work, I returned to the office with my arm in pot. However, the accident put paid to the John O Groats to Lands End ride, the Dragon boat event and also my cycling days!! Julie does let me go into the garage to view my repaired bicycle but she insists that it does not come off the hook.

As soon as my pot was removed I was able to drive again and continue my duties at force training school. My career was on a different track but still on a solid footing.

Then my regular scan delivered me yet another blow. The tumour had returned.

In September 2008, within a very short time I found myself having a second Craniotomy and this time it was declared that the tumour was grade three level and therefore, once I had recovered from the surgery, I had an intensive course of Radiotherapy. This entailed six weeks of daily treatment which came with the well-known side effects of lethargy, tiredness and hair loss.

It is not always possible to view things from a positive perspective. I try to. It took me a long time to try and find even a single positive here. At least the medical people found the tumour rather than the tumour finding me whilst on my bike in the Scottish Highlands and possibly in the middle of nowhere.

Despite the above positive paragraph and the fact that this second Craniotomy did not have the same unknowns it had greater impact because my ability to cope with it mentally was less. I did not want to burden my wife who had been a rock throughout or any anyone else with my depression. It took some resolve to seek assistance and due to a change in policies within the police federation the option of contacting the support group, Red Arc, was not there. There were other counsellor options which I did try, however none were compatible and I found that they were either, from my perspective, ineffective or just, without being rude, not up to the job. They clearly had knowledge and had read significant text on the subject of counselling and aspects, but none of them had life experiences that helped me, which is the specialist knowledge that I had been privy to when I had spoken to Red Arc previously. Red Arc were oncology nurses who understood what patient’s stresses and concerns were and, whilst none of them had a magic wand, they were able to deliver what I personally needed at the time. This time round I found the counsellor's that I made contact with just left me even more distraught and wound up as they clearly came across as having no comprehension of my problems. As a result I felt quite alone.

I now, more than ever, needed assistance to help me find my way out of the dilemma that this terrible illness had created.

There was one exception and this was the Robert Ogden centre who had the empathy and understanding that I was in a maze and tried to significantly help me find my way out of it. Now I find myself in a better place than I was.

When I was declared fit by the doctors to return to work, and not having a Driving Licence again, I chose to use the bus and train to get to and from work in Wakefield. This added at least an additional hour and half travelling time to my day. My neurologist did suggest I retired sooner rather than later due to the nature of the work that I was doing and the stress involved. I believed that it was necessary to choose myself when I retired and that I still felt I had unfinished work to do and that I was still making a significant difference in the role I was performing. My line managers were still very satisfied with my performance, despite my absence, which I felt spoke volumes about my ability.

One thing that did initially disturb me greatly, until I started using it to my advantage, was the manner in which other people viewed me. This related to the impact of losing my hair on the left side of my head due to the Radiotherapy. This was not so much of an issue when using the train, but it was significantly noticeable on the buses as people would avoid taking the seat next to me if they could see the shaved part of my head. I noticed that the adjacent seat next to me would always be the last one to be filled, unless I sat on the left hand side of the bus when people would willingly sit next to me. The reactions and behaviour of strangers disturbed me, until I realized the best way to play it was that if I felt tired, then by sitting on the right hand side I would enjoy the journey on my own unless the bus was full!

I was determined to continue to return to as near normality as possible and complete what I had started in my new role. The regular changes in the medication and titration from one drug to another continues to be an on-going saga. I regularly found myself getting over tired and often realised only when it was too late. I knew the signs as did those close to me that when I got stressed or pushed myself too hard; words and numbers were the first things to suffer.

At the end of July 2011, having completed more than 31 years of police service, I took the decision with my wife to retire. I was asked to return to assist with a project that had started the previous year, which I was more than happy to do. The final months I had found very tiring and I felt I needed to find something new to concentrate on, something out in the open air without the pressure of sitting at a computer screen or having to read documents and reports. I chose to look at the art of dry stone walling. I quickly found that this was a very rewarding and enjoyable departure from my previous occupation and the demands that this activity put on my mind and the physical demands on my body were beneficial. I consulted my Neurologist about this option and he thought this was a good idea, as it would give me an opportunity to try and retrain my brain. It is fair to say that initially the dry stone walling did appear to assist with the loss of dexterity in my right arm and hand. Despite the negative side of having aches and pains that I haven’t had for a long time, I do feel my right side weakness has reduced. As a consequence I continued my training and achieved qualification levels one and two in the art of dry stone walling. As a professional member of the Dry Stone Walling Association, I have not only been able to improve my skills for myself, but also able to sell my skills to others as a business venture.

I enjoy creating and mending walls along with the other tasks that my clients request of me. The only pressure that I have is my own desire to do a quality job, one that I would be happy to have on my own property. Being out in the fresh air is considerably better than being at the beck and call of others. The weakness in my right arm is still there but it is manageable and hopefully will continue to improve. Another area that I have become aware of, as a result of dealing with one client, is an initiative called Eagala, which is about “enriching every life through horses”. This is a non-profit organisation which uses horses to work with people who have various needs and could have great potential for those with brain tumours and their families and I am keen to do what I can to assist in supporting this excellent initiative.

Over the last 20 years, when dealing with people, I have found the use of analogies helpful in getting a point across:-such as a staircase where it is better to take one step up at a time, rather than going up two steps at a time and then going backwards and dropping down one. There are many more and they are easy to use for others, but it is another matter using them for yourself. Living with a brain tumour is a terrible and debilitating situation -- one of the biggest issues I have found is the lack of control that you have over the future. Hopes that you had and plans for the future have gone and you feel a form of mourning. The problem is recognising that the solution is getting over the mourning and rather than concentrating on what you have lost, concentrate on what you still have.

Again, this is easy to say on a good day, it is not so easy to say on a bad day. That’s when everything is harder to deal with. For daily inspiration I have a print. It has two similar scenes one on top of the other, both have the same guy on a pier looking out over a stretch of clouds or water to some mountains. The top print has the mountains in full with the caption “anything is possible” and the bottom print shows the mountain has disappeared into the clouds and water with the caption, “for those who believe”. By keeping this positive image and approach it enables me to continue day to day, week to week and month to month. I am currently planning for a four day’s sponsored walk along the Dales Way between Ilkley and Windermere in June 2013.

I hope that in reading my story you will see that it is possible to go through deep, dark and desperate times, but come out of that infamous tunnel and see the light at the other end. I have to finish with an acknowledgement that all of this would not have been possible if it was not for the support of my good friends and family and in particular Julie, Daniel and Shauna, who have been through hell! Without them and their love and support I would not have been able to make it!
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