Jersey Brain Tumour Charity

Mr M's Story

Trying to cope with the news that one has a tumour.

I was told in August 2010 that the loss of hearing in my left ear was being caused by a tumour that may have been growing inside my head for upwards of ten years.  Quite frankly without measuring its growth the consultant had no real idea but I had to accept the x-ray evidence of a growth within my head.


I was told that I could leave well alone but at some time in the future the thing would grow into my brain resulting in untold problems, the least of which was becoming wheelchair bound or I could have an operation to have it removed. I then knew what Hobson’s choice really meant. The “decision” to have the operation was mine although there was no getting away from the fear of the unknown. 


The consultant did however say I had a 99% chance of a full recovery. I reckoned the 1% shortfall gave him “wriggle room”. It was nevertheless a scary situation and one I had never faced before.


The Consultant asked my wife and I if we had any questions but all I could think of was whether I would be able fly after the operation. His response was “Does he have wings ?“. He told us about a likely facial palsy but I had no idea what that meant.  I don’t recall much else of the consultation. We were told that some patients suffer headaches or nausea or both after the operation. Wow, something wonderful to look forward to. I hate feeling sick let alone being sick so hoped I would just get a headache as all I would have to do was take a tablet! I was, however, very lucky as I don’t ever recall having a headache or ever feeling sick. Maybe I was drugged or just plain insensitive.


The consultant did advise that I could be in hospital for 7-10 days and then I would need a period of a few months to recuperate. I had no real concept of what it meant to be in hospital or what recuperation actually involved. I thought that I would be able to watch TV all day in between eating hospital food but in truth while in hospital people invariably popped in just as a film was ending! I saw the start and middle of loads of films but I have no idea how they ended.


We simply did not know what to ask. With the benefit of hindsight we should have asked about the extent of the after affects such as the inability to walk, swallow, eat or drink or close my left eye.


Perhaps the consultant did me a favour by not scaring me with such horror stories.  I left his consulting room having been told it was a major operation yet I was left with the impression it was routine and being healthy I would be just fine. I later looked on the internet and read some horror stories but assured myself there must be many more success stories which people simply do not write.  In many ways, ignorance probably suited me.


The operation was eventually scheduled for the 1st March 2011. I was apprehensive and probably not at all cool, calm and collected when my wife left me alone the night before the operation. I tried putting on a brave face but probably failed miserably and don’t think I had a great night’s sleep. I was only kidding myself but then that is what men are supposed to do. How wrong and stupid!


Whilst on the one hand one can do without too much information it would have been really helpful to have been told that the after effects are normal and that there is a support team to assist. We later learned that the doctors, nurses, physiotherapists etc were indeed there to help but one needed to think for oneself. I am glad my wife had the presence of mind to question certain things because I was certainly incapable. One example springs to mind; I was told by the physiotherapist that I needed to do more exercise in order to stimulate my muscles but she failed to appreciate I was strapped to a feeding tube for 16 hours a day! My wife suggested an accelerated feeding schedule so I could be disconnected and be free to walk around the ward. The physiotherapist thought it was a wonderful idea but one wonders why she had to be given the idea in the first place.


A good pal had suggested that being nervous, tense and probably a little irritable was normal and fine but to let the hospital staff do their job. We are all different but I would encourage anyone having to undergo such a major operation to be confident in the abilities of the medical staff.


It is now clear to me that my wife needed support almost as much as me. I had the doctors, nurses, physiotherapists, dieticians and speech therapists looking after me but my wife needed support. In many ways it was easy for me. I went to sleep when the lights were switched off, woke up when prodded by nurses etc, was connected to a feeding tube and due to the anaesthetic slept during the day as much as I could.


We found to our great happiness that a great number of our friends called, texted and visited and paid as much attention as they could to my wife. Their kindness will never be forgotten and without their support I am sure my wife would have felt lonely and isolated.


One of the lessons of such an experience is the need to learn all about patience. I was never a patient individual but one learns there is no need to rush.  One has to learn how to adjust. I was told by a myriad of consultants that I had to be patient but I did not know how. It took me months to learn how to walk properly again, how to eat and drink and being able to drive again gave me back my independence.


Whilst the recuperation has been a struggle for both my wife and I there is no doubt that I have gained some valuable lessons such as not to take things for granted and quite simply to be patient.