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“We owe it to my brother,” says sister who lost sibling to a brain tumour.

A sister who lost her only sibling to a brain tumour 30 years ago has spoken out about how little progress has been made in tumour treatment over the last three decades.

Ann and Ian Boyd

Ian Boyd, then 38, first started showing symptoms of what would later be diagnosed as a brain tumour in 1990. He began having headaches, nose bleeds and high blood pressure which, at the time, were put down to stress following the breakdown of his marriage. The GP prescribed medication for high blood pressure for him. His sense of smell was also distorted and, on one occasion, he returned home with some fresh dry cleaning and said it smelled badly so he returned it to be cleaned again.

Then, in September the following year, Ian collapsed at work in his job as a regional manager for a credit agency. He was taken by ambulance to Hemel Hempstead Hospital in Hertfordshire and treated for a suspected stroke. After a two week wait for an MRI scan at Watford General Hospital, the mass on Ian’s brain was found.

Ian was then transferred to the specialist team at the Royal Free Hospital in London where he was admitted and put on a course of steroids for two weeks. This was in the hope of shrinking the tumour ahead of surgery to remove it.

The operation successfully removed around 90% of the tumour, which was confirmed to be a Glioblastoma on the area of the brain which controls speech. Ian was concerned he would have problems with his speech following the surgery but fortunately this wasn’t the case. However, he did have weakness down his right side, and had to learn to walk again and to write with his left hand for the first time in his life.

Ian’s work had previously involved a lot of travel but he was seconded to an office-based role until he was later unable to work at all. Following surgery, he had daily radiotherapy followed by nine months of chemotherapy which left him exhausted and with a weakened immune system. 

Ann said: “Looking back, there were some early signs of Ian’s brain tumour in the year before his diagnosis. But, at the time, we had no knowledge at all of brain tumours so we had no way of even considering that could have been what was happening to him.

“It is incredible to think that, even 30 years on, the treatment offered for diagnoses like Ian’s is still the same and that it still comes with a 12-18 month prognosis. I remember the GP told us at the time that chemotherapy doesn’t cross the blood-brain barrier so it’s barely a feasible option in such circumstances.

“I think that we still don’t yet know enough about how the brain really works and not enough funding has been spent on research into treatments which could cross the blood-brain barrier. When it comes to brain tumours, the “one approach fits all” model for chemotherapy just doesn’t work and we desperately need more options to be available.”

Ian and his family were not offered any emotional support to help with the diagnosis alongside the basic medical information they were given about what the tumour meant. They were not given any main point of help or contact and, after Ian left hospital, his care was handed back to his GP. The family say that they were also not given clear information about the likely outcomes of the treatment, either.

The Brain Tumour Charity, which was established in 1996, firmly believes that everyone diagnosed with a brain tumour should be assigned a Clinical Nurse Specialist provide emotional support as well as offer help and advice about what to expect following a brain tumour diagnosis and throughout the treatment which follows. Ann said that emotional support was only provided for the family when Ian was taken into a hospice when he was no longer able to walk unaided or use the stairs at home.

Ann said: “Quite rightly, the hospitals were primarily concerned with Ian’s medical treatment above all else. I think Ian received the best care available at the time. The focus of his care shifted when he was moved to a hospice – now, it was about pain relief and comfort rather than treating the tumour.

“This was a tremendous help as Ian didn’t have to be brave anymore and for us, as his family, we could visit any time we wanted or lean on a comforting shoulder if we needed to. The staff at The Hospice of St Francis, in Berkhamsted, were absolute angels. They did also offer us a telephone counselling service which my dad and I used on a couple of occasions. It was so helpful to be able to share our feelings and worries with people who understood what we were going through.”

When Ian was diagnosed, scanners were only available in certain hospitals which meant that he and his family had a difficult two week wait before an MRI scan could be carried out.

At the time of Ian’s diagnosis, their mum, Josie, had recently been diagnosed with Alzheimer’s disease so the family were grieving the difficult diagnoses of two loved ones simultaneously. Because of her condition, their mum had to be reminded of Ian’s condition each time they saw him at the hospice as she would regularly forget between visits. The family also felt it was necessary for Josie to be there when Ian died to help her process and accept what had happened.

Just 13 months after diagnosis, Ian died peacefully on 2nd November 1992 with his family at his bedside. Josie never spoke about Ian again after his funeral which made it difficult for the rest of the family to come to terms with the loss. Ian also left behind his son, who grew up in Germany, a daughter who was just turning 18 when he died and he also now has a granddaughter.

Ann said: “It was incredibly difficult for me to see my only sibling so unwell. He had been in the prime of his life only a few short months before. I would cry in private before going to see him and try to keep a smile on my face whilst I was with him.

“Ian was so determined and he had a high pain threshold which I think helped him to get up, build his strength back and practice walking and writing again. He thought his left-hand writing was bad but it was perfectly legible. As there was no social media or mobile phones then, I used to encourage him to write to the people who asked after him to get more practice in with it.”

Ann credits the changes in mental health provision for those affected by a brain tumour diagnosis over the years, including that provided by The Brain Tumour Charity. She found out about the Charity on social media and she has found other people’s stories very comforting which is why she has chosen to share her own.

She said: “We already know that brain tumours kill more people under 40 than any other type of cancer. That should be all we need to not rest until a cure is found for this terrible disease. We owe it to my brother, and the countless others who have been diagnosed, to ensure that their stories aren’t repeated and that success stories become the new norm for those with brain tumours.”