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Harry Cock's Story - 2 ops and radiotherapy!
Following a serious car crash in August 2002, an MRI Scan revealed by chance the presence of a large brain tumour. I was told that it was a meningioma and that it was almost certainly non-malignant i.e. non-cancerous. I knew precious little about brain tumours only thinking that they were pretty deadly. Luckily, I have a brother and sister who are both GP doctors so I was able to quiz them about the next steps and likely outcomes. I was also receiving assistance from an Occupational Therapist who told me about Meningioma Association UK, so I promptly made contact.
Probably one of the most amazing facts is that I had no noticeable symptoms of the meningioma except for some slight problems with balance when playing tennis. This was thought to be as a result of the PTSD and the car accident, but, in hindsight, it is now clear that some of the symptoms of the car crash masked the symptoms of the meningioma. Further contact with Meningioma UK provided me with a great deal of helpful explanation and information on what a meningioma actually is, but also what forms of treatment are available, and where this might be carried out.
Carol and I (aged 54 at the time) discussed the options together, and also with my brother, and decided that the only real solution was surgery.
Together with my local GP, we tried to establish where the best neurosurgery hospitals were located in our area, and found the name of a neurosurgeon at the Frenchay Hospital in Bristol who specialised in the treatment of meningiomas. Following a further MRI Scan, an appointment was made in March 2005 with Prof. Coakham who advised that my tumour was, in fact, in two parts. In his opinion, the largest part would be “relatively easy” to remove by surgery, but the smaller part (an extension of the larger part that had been squeezed into another cavity) might be more difficult to deal with, and for which there was a greater risk of possible side effects.
Finally, I received notification of my surgery operation for the first week of August. Prof. Coakham had allayed some of my fears, but I still felt very nervous about the operation itself. However, I have to say that the nursing staff at the Frenchay were very good and most supportive. The operation to remove the larger part of the meningioma was a success, although I had some side-effects which, fortunately, cleared up after a couple of weeks.
The next stage was how to deal with the smaller part of the tumour which was located in the highly sensitive temporal lobe area. I had received some very good information from Meningioma UK with regard to the use of radiotherapy for the treatment of remaining parts of a tumour. I am very glad to say that the use of this information in discussions with Prof Coakham ensured that I did not run the risk of having Gamma Knife radiotherapy at Sheffield which can sometimes result in harmful side-effects. It was therefore decided that he would investigate the possibility of my having fractionated stereotactic radiotherapy at the Oncology Centre of the Bristol BRI. Further discussions took place with their Neuro-oncologist, together with further MRI Scans to determine more precisely the size and exact location of the remaining part of the tumour.
Unfortunately for me, the Oncology team decided that the remaining part of the tumour was too large to be dealt with only by radiotherapy, so it was back to the Frenchay hospital for a further operation by Prof Coakham. This took place in November with the aim of reducing the size of the last part of the tumour to a size that could be dealt with by the radiotherapy while trying to ensure that none of my senses were affected by the surgery. Happily, the operation was a success, and once back at home I was again active even more quickly than after my first operation.
The final stage was therefore the radiotherapy treatment which I was able to start in May/June 2006. Again with good advice from Meningioma UK, I was aware of what was likely to be involved, but all the same I have to admit that I was really scared.
Being unconscious while a surgeon fiddles around inside your brain is one thing, but for me the idea of the radiotherapy treatment being carried out while I was fully awake was a hundred times worse!! But I have to say that the radiotherapy team at the Bristol BRI were truly fantastic by carefully explaining, without rushing, each and every step, and answering the many questions that I had. Fractionated stereotactic radiotherapy means that you receive only very small doses of radiated ions carefully planned and directed by specialist equipment that is attached to a standard radiotherapy machine. The planning of the direction of the beams is prepared by a computer programme, but to ensure that the beams only reach the parts that they are intended to reach, your head has to be held firm in a special frame that is then fixed securely to the treatment bed while the radiotherapy machine works. In my case I received the beams in two different “segments/arcs” that in each case lasted for only approx 25 seconds. But to ensure that the frame fitted to your head is in exactly the same position each day, a special test is carried out in advance of each treatment. But despite these necessary tests, on most days I was actually in the treatment theatre for only approx 25-30 minutes.
The treatment lasts for six weeks, one session each day Mondays to Fridays, with a break at the weekend to let the body (and mind) have a rest. I believe that I was fortunate in that I did not find the treatment too difficult to endure, I had only occasional spells of tiredness, and a small loss of hair at the back of my head in the area where the beams were most concentrated. The reality is that the six weeks seemed to fly by which can only mean, that despite my fears at the beginning, the team of radiotherapists and technical support staff were absolutely superb with regard to their caring and uplifting spirit.
Fatigue, which is a common after-effect of the radiation treatment, continues for several weeks after the end of the daily sessions. This left me feeling quite tired and for which I just took a short nap most afternoons. Otherwise I have had no noticeable side-effects, and I am now waiting for a review which will take place approx three months after the end of the radiotherapy treatment with a another review to take place after six months. Each review will be preceded by an MRI Scan which will, I hope, confirm that the tumour has been “stabilised”, thus allowing me to get back to a normal style of life once again.
So, for me, the sudden discovery of a brain tumour, although certainly eventful, has certainly not been the end of the world that I initially feared. I am very grateful to Meningioma UK for all the advice and support that they were able to provide, and am more than willing to provide assistance in any way possible as a means of helping anybody through the difficult stages that I have been through myself.
Finally, and by no means least, I am, of course, extremely grateful to my partner, Carol, who has not only had to put up with all the above, but has done so with so much love and care. Without her it would all have been much, much harder – Thank you, Carol.
Brain Tumour UK Website: braintumouruk.org.uk