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Help Juliette fund life improving Proton Therapy
£1,785 raised
4% of £45k goal
36 contributors
4 Years running
Background I had been feeling ill, sometimes very ill, for quite a long time. In December 2011 I was admitted into hospital as I had a full three days of uncontrolled vomiting. Initially, it was thought I had contracted the Noro Virus, but ...


I had been feeling ill, sometimes very ill, for quite a long time. In December 2011 I was admitted into hospital as I had a full three days of uncontrolled vomiting. Initially, it was thought I had contracted the Noro Virus, but the episodes continued over several months. I began to lose the hearing in my right ear such that I could no longer understand tone or voices. At the same time, I was experiencing ever increasingly intense headaches; occasionally, these pains hurt so much that I couldn’t breathe. I felt almost continually tired and began to see a chiropractor due to neck pain, during treatment once or twice I felt that I might lose consciousness , I now know that he was pushing on the tumor that had slowly grown from within my skull and also onto my cranial spine. However at that time, neither he nor I were aware of that.

In April 2013, I finally had an MRI scan and on 25th April was diagnosed with a large brain tumor.

Diagnosis and initial operation

Following my diagnosis, it was explained that my tumor was a grade 1, benign meningioma but I would know more after the operation. It was initially thought that I would have an operation within three months, but the time frame was moved forward as I could no longer walk in a straight line, my right eye also began to ‘pop’ out and I started to experience double vision.  My operation was therefore scheduled for and took place on 23rd May 2013. I was 49 that day and have had a hole in my skull since J Happy Birthday to me!

The operation went well and 50%+ of the tumour was removed, however a ‘substantial’ amount of the disease remained and it was nestled deeply within my brain. The diagnosis, if all the words are added together, read ‘right sphenoid, tentorial, middle fossa and infra-tentorial, extended meningioma’.

‘It is classed as being ‘benign’ but then can any substantial and sustained growth that is distorting, disfiguring, inflaming and finally permanently damaging the brain be ‘benign’?

Moving on

Over a period of 6 months, it became apparent that a full cure would not be a simple matter. During surgery, my cranial nerves had ‘decompressed’ hence making a little space for me to function again. I could still not see properly but my hearing was so good that it sounded like everyone was ‘shouting’!

It was further explained that I could receive alternative treatment as my treatment had gone as far as it could with surgery. My tumour was too difficult to reach; too near to ‘critical structures’ and the more precisely controlled ‘Intensity Modulated Radiation Methods’ posed too great a threat to be considered as an option.

As one of the Doctors said, referring to the location of the tumour, “It is like Spaghetti Junction down there”.

Unfortunately I could only be offered Conventional Radiotherapy in the UK. My brain tumor is so close to the center of my brain that the peripheral damage would have been substantial and I would most likely have been more disabled. The dose of conventional radiotherapy needs to be high to begin with as it loses momentum on the way through the body. My eyesight had been already affected substantially, as it has been since May 2013; I have double vision at all times and need to use a walking stick and prism to get about.

During what was a very distressing consultation, the radio-oncologist was very good, he clearly explained all of the risks. The list was so long that I recall only a few but amongst them was the chance of blindness, memory deficit, loss of mental function, the cessation of pituitary function, sickness for some months and who knows what else.

More Research to do:

I expect that everyone will understand that I could not sleep. Within two days, I knew that I could not possibly agree to have Conventional Radiotherapy as the risks were too great. At this point I knew nothing about Proton Therapy but, by sheer coincidence, one of my cousins mentioned it. Having researched it, I started to understand the distinction between Conventional Radiotherapy and Protons. Protons have a lower entry dose, a higher ‘tumor’ dose and no exit dose. The physics seem to come from the heavier ‘ion’ properties that can be more carefully controlled. I decided to do more research. Sadly, there is no current UK Proton Therapy facility, though two are under development, scheduled for opening in 2018. I had to act fast. Proton therapy was the only possible cure for my condition, before my condition deteriorated and became incurable.

Choosing Prague:

I chose Prague as it is close to home, my family and friends and the flight is short. After brain surgery, I really did not want a long flight home.

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