MY BRAIN TUMOUR/CANCER
Matt Winter writes.....
This is a story of my own personal journey through diagnosis, treatment and living with a brain tumour. Many people go on the same journey but with different treatments and experiences the outcome is not necessarily bleak.
My name is Matt, I am 37 years old and was a fairly healthy non-smoker working outside a lot of the time before getting ill. It all started in 2004 when I was 34. In the mornings I would feel sick and sometimes vomit and also I had a sharp headache every time I bent over, it felt like when you drink fast food milkshake (the ones like melted ice cream) too quickly, that sensation you get which my wife jokingly calls brainfreeze! I later had other symptoms including deafness in the left ear, loss of sensation to the left hand side of my face and occasionally double vision but they manifested themselves quite slowly. I went to see my GP and was diagnosed with several conditions - a sinus infection was one of them I also had my ear syringed but this did not help with my hearing loss at all. This went on for many months with the symptoms getting gradually worse. Eventually I was referred to see a neurologist and had a MRI scan. When the telephone rang the day after the scan requesting I return to the hospital my wife could sense something was very wrong, we returned and were shown scans of my brain and much to our horror there was a white mass about the size of a golf ball at the back. We were told it was a tumour and asked to wait outside while the neurologist got a second opinion. I am happy to say that the hospital has now changed its procedures and in the future private rooms and a nurse will be available - we had to sit in an outpatient area and were quite stunned at what we had just seen, we waited for half an hour before it was confirmed that it was a tumour.
Time passed. We had several meetings with a neurologist who thought it may or may not be operable. We were told it was in an awkward place and he recommended different types of MRI scans which could show more detail before a decision was made whether or not to operate. Thankfully and eventually an operation and biopsy was carried out after we made many telephone calls to the ward sister for availability of a hospital bed. We had to wait for a bed and I remember a nurse asking what I was having done, "A craniotomy" I replied, the internet is a wonderful tool for finding out information!
Unfortunately the doctors could not remove all of the tumour and I was left disabled, the surgeon had removed part of my cerebellum to get at the tumour, I then spent a week in a high dependency unit and returned to the ward for a further 3 weeks. I was told I had cancer, a grade 3 astrocytoma and would need radiotherapy. I then transferred hospital so I could be closer to my home and I spent a further week there and then returned home.
At a hospital appointment I was worried about how radiotherapy would affect me. I was told the devastating news that my life expectancy was not very good; 6 months to a year. I waited a few weeks and then went as an outpatient to have 6 weeks of radiotherapy. Afterwards the scans revealed much to our delight that the remains of the tumour had stopped growing.
Since completing adiotherapy I have received a placement via my Macmillan nurse to a hospice one day a week which has been very helpful - I was even able to talk to a counsellor. I have found the disability harder to accept than the life expectancy I was given. I salute the bravery and courage of all disabled people and I am humbled by their strength. All the staff there are wonderful and it has been a great help and boost to me and my wife. The support has been invaluable. I also attend a disability group once a week which was set up by my social worker and I also find this a great help.
Recently I attended a regular review after a scan at the hospital and asked whether or not I am terminally ill the reply was a definite "No". The joy and relief my wife and I felt after hearing that was indescribable.
I would like to finish by saying that there is always hope. I understand I have a life limiting illness but I am now looking to return to work and have just sent forms off to the DVLC in regard to driving again. The disability has stopped me enjoying things that I used to do - I used to live a fairly adventurous life but I am finding many new things to do. We now even own a dog that we love very much which we would not have done when I was well and at work. There are actually positive things that can happen after a brain tumour, I also see life with a different clarity many things now perfectly clear and understandable and others trivial. I now look forward towards the future and realise that you can have a life with a terrible illness.