Vivien's story - craniopharyngioma

I had a pituitary tumour (craniopharyngioma) diagnosed 12 years ago which was very frightening at the time. My first symptoms were terrible thirst; I couldn’t pass a pub without craving ice cold lime and soda in a pint glass!

At the time, I worked for British Airways looking after unaccompanied children and would often have to take them from one terminal at Heathrow to another and sometimes to Gatwick;
I would be desperate for a cold drink on my return to our lounge. This went on for some months and then more severe symptoms started to occur. I was having very bad headaches that would send me to bed in a darkened room. At this stage I went to one of our GPs who gave me antibiotics, saying that I had an infection. I was feeling really unwell and this went on for many weeks - going back to different GPs in our practice. I was feeling more and more unwell and was losing weight, couldn’t eat and by then had sickness and diarrhoea.

At work, I had won a free airline ticket and suggested to my husband we should visit Washington for a few days. He didn’t want to go so I decided to go to Perth, Western Australia on my own to catch up with my cousin and his wife, to the beach and their swimming pool. I went to see my GP to ask if it was OK; he gave me some more medication and said two weeks in the sunshine would do me good. I was lucky enough to be sat in first class - which was excellent as I spent most of the flight either asleep or being violently sick (the ratio of passengers to loos in first class is great). When I reached Perth, my cousin took me straight to their doctors who gave me an injection to stop the sickness. I spent a very miserable time in Australia feeling terribly cold (I borrowed my cousin’s thick socks!) and bought a thick track suit. After several visits to my cousin's GP, who wanted to admit me to hospital for tests, I decided all I wanted was to get home. My husband, David, who was a Manager with British Airways, knew and spoke to the Head of Cabin Services and she sent a message to the crew on my flight home and they looked after me very well, although I slept for most of the flight, staying on the aircraft asleep when we touched down in Singapore. Thankfully I was met at Heathrow by our son, Simon, who was shocked by my appearance. My husband was getting more and more frustrated as he knew there was something really wrong with me. Our daughter, Debbie, who is a Nurse Practitioner, kept nagging us to go to A & E, but we thought our GPs knew best.

I was so weak by this stage, that one Saturday morning, David phoned the doctors and spoke to the head of our practice, who asked us to go to his house immediately. He examined me and
arranged for me to be admitted to our local hospital Heatherwood in Ascot, Berkshire. I looked and felt awful and after spending a day in the Admissions ward being sick whilst people were trying to eat and sleep, they finally decided to give me blood tests and an MRI scan. When I came back from the MRI scan, the curtains around my bed were drawn and a young health care assistant told me to be brave! I was spoken to by a Portuguese Registrar who informed me I had a brain tumour, and pointed to where it was. She told me they were discharging me and they would be in touch. Because of the way I was told and the fact her English was not very good, my husband and I were in shock and didn’t understand what was going on. 

This was a Friday and on the Monday morning, my husband phoned the Endocrine Consultant who explained everything to us and arranged for us to see him. He told me that he wanted to refer me to the Radcliffe Infirmary in Oxford to be under Professor Wass, as he was a leading Consultant Endocrinologist – also, as I almost certainly needed an operation to remove the tumour, this operation would be performed by Chris Adams who was a leading neurosurgeon.

Within a few weeks I had been seen by Professor Wass and on 1st April 1999 had the operation to remove the tumour from my pituitary. I was lucky enough to have private health insurance and so I had my operation and recuperation in the Acland Nuffield Hospital, in Oxford. I felt no pain, just discomfort from not being able to breath through my nose; it was tricky eating. After a week I was discharged but a few days after I had returned home I started to get really bad headaches and had to be re-admitted to hospital. There was a suggestion that I should have a lumber puncture which I found all very scary. In total, I spent 17 days in hospital with my husband visiting me every day and friends and relatives too, our best friends even came to see me from Wales. I had lots of tests and was eventually put on a cocktail of drugs to replicate my pituitary function. I wasn’t aware that my peripheral vision had been impaired, but being tested after the operation, my vision had gone back to normal. I had to let the DVLA know about my condition and was very upset that I might not be able to drive in future, but after a few weeks and confirmation from the medical staff that my eye sight was OK I was back behind the wheel.

When I came home I remember being very weak and could just about shower myself but my husband had to dry me. The only good thing was that I had got my youthful figure back! Unfortunately because of the steroids and my advancing age, weight has been a big problem. For some years I have dieted, exercised at clubs and at home but it has been a losing battle. One of the other down sides of my condition is that we now have to be more careful where we go on holiday. My husband still enjoys his concession with British Airways and being retired we holiday a lot. We love exotic places, but having been ill in India, it made us a little more aware of the dangers of these sorts of holidays.