A long road to the diagnosis of my tumour
It really has been a long road to get to this point and I have spent the last two years knowing there is something wrong deep inside me, but unable to articulate it in such a way that either myself or others could understand. Knowing now explains so much and in many ways it is a great relief to finally realize that it has been my tumour, causing or contributing to so much of my thinking, behavior and symptoms over the last few years.
It has, inside, felt on so many occasions as if no one was listening and these feelings of listening, spurred feeling of anger and resentment towards everything. My tolerance levels for everything dropped and I had no idea why. It made me feel as if I was going mad, small tasks became harder to perform, not physically but mentally and that in turn has caused me much frustration.
After farming for so many years you would think I might be used to paperwork. The number of forms adorning your desk as a livestock farmer after some overpaid bureaucrat awoke with yet another pointless idea only adding to the burden of business, never fazed me. In those days I tripled my paperwork too by keeping pedigree cattle, it was all just part of a days work. Now just filling in a simple form or the organization of ones day has become quite an effort
Mix this with the slowly increasing physical symptoms over time, and in some ways you don’t know whether you are coming or going. There is a large part of you that worries people think you are lazy, going mad or not up to it any more.
And so the eventual diagnosis, however dreadful at least started to explain how you have been feeling and behaving to yourself and others, none more so than Francesca who has had to put up with me over all this time and without a proper explanation of why her husband has become the way he has.
I have over this time been given anti depressants on occasions, which have sent me round the bend and have been quite plainly the wrong thing, I have never been depressed in my life, angry and argumentative yes but depressed! Give me strength. Then counseling which was interesting, as I disagreed with everything being said, in relation to me anyway, I am sure they were glad to see the back of me in the end.
That was all before the physical symptoms started to show and for me become quite apparent. I then started to see doctors more and more, explaining my situation how I felt and by now I had become really very emotional and quite uncontrollably so, my eyesight was worsening my hearing was getting dreadful; tinnitus had reared its annoying head and my balance with increased dizziness had become quite a problem. None of the specialist appointments I had been booked to see ever turned out be the right person that I was supposed to be seeing. None had notes on me or any idea why I had gone to see them, none of whom added my words to my notes and one who looked up my symptoms on Google.
After a year of badgering GP’s, I was eventually given an appointment to see a neurologist with a recommendation to be given an MRI scan at Bury St Edmunds hospital. Sadly they got that wrong and sent me to see an optician instead.
I spent a frustrating summer in Suffolk, a summer with my daughter Virginia, who was quite aware that her father was not on the right track, short tempered, always tired, forgetful the list goes on, it was at this time my eye sight in my right eye, got much worse and there was quite a jump in my deafness and dizziness. Virginia and I went to play tennis on one occasion and it was then I really knew there was something wrong. Unable to return a ball to her, my judgment had completely gone and as I ran round the court the feelings within my head were more than uncomfortable as every step jarred through me and my balance was noticeably bad, a bit like being drunk all the time! More and more I was sneaking of for a rest as after work I would collapse with tiredness, completely unable to keep my eyes open, just drained.
When I eventually got back to my home in Devon and after another doctors appointment, I went to see another neurologist, again I was expecting to have an MRI scan that day but to no avail as the locum neurologist told me quite bluntly there was nothing wrong with me. He gave me a balance test, which involved me walking across the room without my shoes on… brilliant why did I not think of that? I was cured and he then wanted to send me on my way, with an attitude of; “don’t waste my time” in not so many words. He did not have my notes or seemed to even want to see them; he certainly had no intention of listening to me. It could be said I lost it at this point, and my insistence on receiving an MRI scan, as rude as I decided to then be to him, came true on that day and I was at last booked to have one.
It took a year to get to that point and it always pains me, my friends will be amazed to hear, that one has to become angry and shout to get anywhere in the medical world these days or you will be ignored. All that time wondering what on earth is wrong, while you put, unintentionally, your wife, family friends thought he mill as well. I know I have.
So what can I say, well there is no doubt, knowing what is wrong with me and for others to be able to understand as well is so important in the end. It on one level gives peace of mind and at the very least explains to the ones you love what has been going on. There is no doubt that understanding something alien to ones self can bring some kind of relief.