In Our Hearts
Less than 20% of those diagnosed with a brain tumour survive beyond five years
The diagnosis of a brain tumour is devastating for the patient, their family and friends.
For these people life will never be the same again.
These very brave people will remain in our hearts for ever and it is because of them that we are fighting to find a cure so that no other family should have to suffer in the same way.
We thought of you with love today, but that is nothing new.
We thought about you yesterday, and days before that too.
You are forever in our hearts.
Ian was only 41 years old when he passed away, just three months after learning he had an aggressive glioblastoma multiforme (GBM4). His passion for riding and specifically the sport of eventing, led his widow, Kathryn, to establish the Ian White Memorial Trophy. This is presented each August during the Smith’s Lawn horse trials in Windsor Great Park to the best amateur event rider.
“Ian was then transferred to the John Radcliffe in Oxford where he underwent a biopsy – we had already been told that he wouldn’t have surgery because of the position of the tumour. Until this point we clung on to thinking that there would be some hope, but when we were given the results of the biopsy, that Ian had a high grade glioblastoma multiforme (GBM4), we both knew this was it. We saw the consultant together. He was quite clear that Ian couldn’t be cured…”
Here is Ian’s story as told by Kathryn…
Ian and I met during our first year at Nottingham University when we were in the same hall of residence, but it wasn’t until the second year when we actually got together. I was taking chemistry and Ian project engineering and project management. We played volleyball together for a while and then at a Christmas party we had our first kiss.
When we completed our degrees, I stayed on at university to do a PhD while Ian secured a job working at the manufacturing site of Boots the Chemist (as it was then known) in Nottingham. Later, I moved to Tring and started working for Amersham Healthcare, so for the two further years that Ian continued to work for Boots, we conducted a long-distance relationship.
We married in March 2000 in my home county of Lancashire. Everyone thought we were mad having our wedding in the North in early spring, but we were blessed with sunny, if cold, weather. It was a very special day with all our close family and friends and it wasn’t until the next morning at the airport that Ian revealed our honeymoon destination – Tuscany.
While I was an absolutely horse-mad child with an obsession for riding, Ian, despite the fact that his mum had horses and his sisters both rode, had never been tempted. Well, that is not until we had our first holiday together touring the UK and ended up having a horse ride out in the Yorkshire Dales. He was immediately hooked and started having riding lessons and his mum gave him some rides on her own horse, Guinea, too.
Ian never did things by halves, so when it was my 30th birthday, we went out and bought our first horse, Willow. A year later, towards the end of a week’s holiday in Ireland, he had fallen for another horse and quickly negotiated a price to bring Moose back home.
In 2003, we had our first trip to Burghley House, home of the world-renowned three-day event, Burghley International horse trials. We took part in a course walk there with Jeanette Brakewell, a professional event rider and member of two British silver medal-winning teams at the Olympics. Ian turned to me and said: “I think we should start eventing.”
Neither of us had done anything like this before – I hadn’t even been a member of the Pony Club as a child, so it was a real baptism of fire. It soon, however, became our shared passion in life and we were blessed with incredible support from Ian’s parents, which included lots of wonderful picnics prepared by his mum and hours of video from his dad, which hold very dear memories now.
Ian’s finest hour was when, in 2006, he was placed in the top 10 riders at Gatcombe Park and was presented with his rosette by Princess Anne. Both sets of parents were there for this joyous and memorable occasion.
We felt like we were living a gilded life, both working for a blue chip company and having a ball with our horse riding.
In December 2007, Ian began to feel quite exhausted and was finding it difficult to concentrate, but we put it down to stress. Then one day he rang me to say he would be late home because he had missed his junction on the M25 – we later discovered that this was probably due to a deterioration in the sight in his left eye.
Ian also started to feel dizzy and collapsed at work one day. He had blood tests, but nothing showed up.
In February 2008, Ian woke up screaming with the pain of an excruciating headache. I rang NHS Direct who suspected meningitis so we took him to A&E where doctors asked him to rate the pain on a scale of one to 10. It tells you how bad it was when Ian, a man who had only ever taken two days off work in 18 years, rated the pain “a 10”. Despite the fact that Ian had vomited on the way to A&E and along with all his other symptoms, he was still diagnosed with migraine and sent home with painkillers.
There were a number of further trips to the GP which resulted in nothing more than further migraine medication. Then a work colleague of mine, a doctor and former GP, insisted I went back to the GP and refuse to move until Ian was referred for a scan, which was exactly what I did. The GP relented and we were told to expect an appointment within six weeks.
Meanwhile, the fact that by now Ian only felt confident to walk if he was following me, alarmed me so much that I took him back to the GP, who was very dismissive. She made it clear that she thought that we were wasting her time with Ian’s ongoing ‘migraines’ and witheringly told us that brain scans were normally reserved for people with serious brain issues like tumours!
Thankfully, an appointment with a neurologist at Stoke Mandeville Hospital came through sooner than expected and, even more thankfully, he took Ian’s symptoms very seriously. Not only was Ian scanned that day, but he was also admitted because the doctors had found a mass. I remember tears welling up and feeling stunned as I heard the news. Ian immediately went into ‘practical mode’, telling me he would need to share stuff about his business with me as well as the household bills he was in charge of. He insisted on going home briefly to say goodbye to Moose first.
Ian was then transferred to the John Radcliffe in Oxford where he underwent a biopsy – we had already been told that he wouldn’t have surgery because of the position of the tumour. Until this point we clung on to thinking that there would be some hope, but when we were given the results of the biopsy that Ian had a high grade glioblastoma multiforme (GBM4), we both knew this was it. We saw the consultant together. He was quite clear that Ian couldn’t be cured, but they would refer him for radiotherapy and chemotherapy.
We came out of his office and in the hospital foyer we just stood there hugging each other. It was the only time that Ian said: “Why is this happening to me? I have so much I want to do”. We then had to tell his parents, who were waiting for us in the coffee shop. Despite the news, we still totally believed that we would be able to manage his condition and that he would be around for some years to come. Ian’s parents were incredible – in fact they and his two sisters came over to sit with Ian most days while I still went in to work.
I was still working as I felt I had to keep earning money and still believed that somehow Ian would get through this. We were waiting for Ian to start his radiotherapy treatment which was set for six weeks after his biopsy, because the wound needed time to heal.
Ian was still feeling positive though he was very frustrated about having to wait to start treatment. Every time the phone rang, he would pick it up hoping it was the doctor telling him he could start.
On days when he was feeling a bit stronger, he would insist on us going for a walk around the village as he wanted to keep as fit as possible to help him fight the tumour. Some days he would even come with me to the stables and I remember him riding round on Moose. He was too weak to do anything other than walk, and his left hand couldn’t really hold the reins. On the one hand, it was sad to witness, given that Ian had competed at novice level in eventing, but on the other, it was heart- warming to see the joy he took from just being outside and with his horse.
Then Ian started having seizures due to the progression of his condition. We had planned to move in with his mum and dad during his treatment so that we could coordinate this with my working, and because they lived much closer to the hospital. Given his deterioration, we brought this forward by a week.
After a week living with his parents, and only a few days away from hopefully starting treatment, Ian’s scar became seriously infected. We called an ambulance to take him to the hospital and he never came home. It was during his time at the West Berkshire, that the oncologist told Ian that they weren’t going to be able to treat him after all. He was too ill. It was then that Ian finally realised the game was up and I saw his determination to survive fade.
It was obvious, in the three weeks that Ian was in hospital, that the staff were totally over-stretched. Ian would often press the button for a nurse, but no one came. One night he was so desperate, he actually phoned me at 4am to tell me he needed help to go to the loo, but was getting no response from the nurses. I phoned the hospital to drum up some assistance. Five minutes later the phone rang again. It was Ian. He said: “You grass!” so I knew help had been achieved. Despite all he was facing, he never fully lost his sense of humour and showed incredible courage.
Ian was then transferred to the Sue Ryder hospice in Nettlebed. By this time, he was in a lot of pain which had also spread to his neck and shoulders. In the hospital the medics had never got on top of his pain, but very quickly in the hospice they had Ian completely comfortable. The care there was amazing – Ian had a private room and very importantly I could stay with him 24/7.
Ian’s mum, dad and sisters spent many hours with Ian in the hospice while he was gradually slipping away from us, but it was understood that if Ian passed away overnight then it was my time. A few days before we lost him, we brought his beloved horse Moose to the hospice. I really felt that Ian could sense him at the window. It was the first time a horse had come to visit at the hospice and it caused great excitement among the staff.
On the night of 15th April 2008, I popped out of the room for a short while and just as I came back in, Ian took his last breath. It was as though he had been waiting for me to return.
In May, a year later, one of our friends was diagnosed with the same brain tumour as Ian by the same GP. The one good thing was that the GP immediately recognised the symptoms and referred him quickly for a brain scan. The sad thing was that he knew what to expect, given that he had seen how my Ian had progressed. Later that year and despite having surgery, he lost his battle too.