Denise’s Journey


I was 15 years old at school and rubbed my right eye only to discover I couldn’t see anything out of my left!

I had experienced headaches for a couple of weeks but put this down to revising for exams and when I told my parents, we put it down to tiredness. When this did not resolve, without understanding the seriousness, I visited our family GP who referred me to the National Hospital of Nervous Diseases in London where I lived.

Over the next few weeks I underwent numerous tests until a diagnosis of a craniopharyngioma was made. The neurologist advised me that surgery to remove the tumour on my pituitary gland was necessary as it was continuing to grow, but warned my parents and me that were no guarantees as to the outcome.

Whilst waiting for surgery, I did indeed lose the sight in my right eye as well, and there was some concern that even if the surgery were successful, my vision may not return or may be permanently damaged. This was back in the 1960’s when neurosurgery was a relatively new speciality and the sophisticated investigative equipment did not exist as it does now. Due to the amazing skill of the surgical team, the post operative care by other medical and nursing staff, I was discharged after a few weeks in hospital, with almost perfect vision.

As my posterior pituitary gland had been removed and I hadn’t yet reached puberty (due to the tumour) I was referred to an endocrinologist who started hormone replacement therapy and other medication to compensate for the lack of cortisol and thyroxine production. Throughout this time, I experienced issues with body image associated with “artificial development” as I knew I wasn’t ‘normal’ even though the hormones did a reasonable job in making me appear like an average young woman. This was not always easy to accept but when such feelings came over me, I tried to remember how thankful and blessed I was for my life and sight and concentrate on the more important things in life. I developed diabetes insipidus – that causes the fluids in the body to become unbalanced – although this is now well managed with medication.

Years later, I went on to marry and despite several attempts at IVF, was not blessed with having children. This again gave me feelings of not being ‘normal’ but I lived a full and productive life in many other ways. I qualified as a nurse and subsequently worked as a senior hospital manager in the NHS for many years. I continued working in the health sector after moving to Australia almost 20 years ago, am now retired but actively involved in a range of voluntary work which keeps me healthy and active.

I am monitored twice a year by a wonderful endocrinologist and my condition has remained stable for the past 58 years. I require medications daily to manage my ongoing health but have not needed any radiation or further surgery. Due to the resulting secondary adrenal insufficiency I have to be careful if I become unwell, as my electrolytes can become unbalanced quickly and in those circumstances, I need extra medication.

It’s true to say that my life has not turned out like I imagined it would when I was younger, but I have learned so much from the experience, and in truth, if I had my life over again I wouldn’t change a thing. It has made me a stronger person and able to face other challenges that arise in life. My faith has provided comfort and support and at rare times when I have struggled with feeling different, to be able to look out the window and see the sunshine and beauty of creation when once I couldn’t, is something I shall never forget and always be thankful for. If or when the future looks daunting and scary, embracing the challenge, the joy and gifts life has to offer is rewarding in itself.