My story so far…
Welcome to my blog. You have found it, I guess, either because you know me and want to see how things are going, or you have searched the topic in the hope of finding something out about it.
I’m Hellie (more properly, Helen): a woman, a gutsy one I like to think; a wife; a mother of two; a daughter (and in-law); a sister to four siblings (and in-law); an Auntie Hellie to a respectable number; a friend; a teacher; and now…a blogger – I never imagined myself as this last one.
In February 2016, I found myself spinning from being told I had something in my brain that shouldn’t be there.
A sudden onset of double vision had initially set me on this pathway, in December 2015, when my class of 27 children seemed to multiply before my very eyes. Not literally and I hadn’t been imbibing in class.
I was diagnosed in March with a chordoma, growing from my clivus bone (an obscure bone in the base of the skull) and onto my pituitary gland.
The chordoma was beginning to push itself into my brain and affect my vision. I am very fortunate that a biopsy showed my tumour to be benign when it was discovered. Some aren’t, and some can change in nature.
Now, I am on the verge of proton beam therapy in Zurich, three transphenoidal surgeries later and a few other messy bits on the way.
What is Proton Beam Therapy?
Proton beam therapy is a type of particle therapy used in the treatment of cancers (tumours) which are tricky to get to.
It’s very precise and avoids damage to surrounding tissue – very important if your tumour is right next to your healthy brain tissue.
It isn’t available in this country and so UK patients, who meet the criteria for PBT, can be treated abroad.
My treatment will be in Zurich, in the Paul Scherrer Institute, Villigen, a cutting edge centre brimming with scientific talent.
Why am I writing a blog?
This blog is for a few reasons: to keep my loving family and friends up to date with how my therapy is going and how I am; to be a source of information, comfort and support to other people who find themselves in similar circumstances; and to perhaps be of interest and use to the medical profession, as a patient’s viewpoint of the experience.
It might also be cathartic for me and means I won’t need to keep revisiting the same ground over and over. Whatever your reason for reading it, thank you, and I hope it helps you in some way, whatever form that too might take.