Jamie Fairweather spent his vacation in Majorca earlier this 12 months mountaineering, operating and biking.
An excellent-fit 61-year-old, he’d lately stepped again from a protracted profession in finance to spend time together with his household and was away together with his spouse Mary, 62, their sons Rory, 29, and Struan, 32, and younger granddaughter, Ailsa.
When the mountain bike he employed to tour the island appeared considerably wobbly, he blamed the bike.
However in the direction of the tip of their ten-day keep he felt so unsteady on his toes that he wasn’t assured holding Ailsa, then 16 months. And by the point he and Mary checked in for his or her flight residence to Gullane, East Lothian, on Could 17, Jamie was struggling to choose their tickets out of the journey pockets.
He made an pressing appointment together with his GP, who despatched him for a MRI scan, which revealed ‘abnormalities’ on his mind. An pressing biopsy adopted.
Three agonising weeks later, the couple obtained the outcomes. They may not have been extra devastating.
Jamie Fairweather on vacation in Majorca in Could this 12 months
Jamie had two fast-growing gliomas, a sort of tumour that happens within the mind and spinal wire — in his case, a type known as glioblastoma multiforme (GBM).
The tumours have been inoperable and incurable. Jamie was supplied six periods of radiotherapy to sluggish their progress.
‘To me, crucial factor in life is a constructive outlook,’ says Jamie, his voice breaking. ‘Forgive me if I cry. However with this illness, you stroll right into a room to be informed neither surgical procedure nor chemotherapy goes to assist. Even with radiotherapy you’ll be useless inside 12 months. Then you definitely stroll out into one other room with a field of tissues. And that’s it. You’re left with out hope.’
Jamie and Mary drove residence in silence.
‘I’ve realised one in all my life expertise is that I can drive very properly whereas weeping,’ says Mary. ‘I cried and cried for weeks on finish.’
The shock and the devastating velocity of the illness, she says, ‘has been like a forest hearth, burning by our residence and each a part of the life we knew. Everyone — our kids, our household, our pals — is traumatised by the velocity of it.’
Mind tumours are the largest most cancers killer of these aged below 40. Round 120 varieties of mind tumour have an effect on 12,000 individuals within the UK annually. Within the overwhelming majority, the trigger isn’t identified.
Round 2,200 circumstances of GBM are identified yearly. The typical survival time is 12 to 18 months. Solely 25 per cent of sufferers survive a couple of 12 months, with fewer than 10 per cent alive after 5 years.
Speedy decline: Jame pictured simply 4 months later in September
Regardless of being among the many hardest varieties of most cancers to deal with, GBM will get the least funding for analysis. Simply 2 per cent of the £700 million most cancers analysis finances is devoted to mind tumours, of which lower than 1 per cent is spent on GBM. Consequently, survival charges haven’t modified in 40 years.
‘There isn’t a doubt that funding is a key challenge,’ says Professor Keyoumars Ashkan, a marketing consultant neurosurgeon at King’s Faculty Hospital in London. ‘We noticed in the course of the Covid pandemic how focusing cash in a single space of analysis may end up in new, efficient remedy in below a 12 months.’
Within the latter a part of his profession, as CEO of Massive Problem Make investments (which gives loans for charities and social enterprises), Jamie grew to become more and more considering how the monetary world can drive social change.
His view is that pharmaceutical firms might be made to spend money on much less worthwhile ailments similar to GBM in the identical means that builders should spend money on social housing in the event that they need to construct luxurious flats.
‘In the event you’ve obtained a licence to make billions by investing in mainstream medicine, it’s best to have a concomitant accountability to spend money on medicine that aren’t going to provide an enormous monetary return however will ship most profit for devastating cancers similar to GBM,’ he says.
‘Think about what doubling the analysis finances into GBM would possibly reveal.’
One other issue that makes treating GBM so tough is that no two glioblastomas are the identical, Professor Ashkan explains.
‘It’s a really unstable tumour which adjustments quickly,’ he says. ‘And once we analyse tissue from the completely different areas of the tumour in the identical affected person, we discover every half has genetic variations.’
In the meantime, a serious trial of a cannabis-based drug known as Sativex, used alongside chemotherapy, is ready to start out at 15 NHS hospitals. Pictured: medicinal hashish
The hope is that personalised immunotherapy, which stimulates the affected person’s immune system to struggle their tumour, will carry higher information for these sufferers, he says.
In a trial with a sort of immunotherapy known as DCVax-L at greater than 90 hospitals the world over, together with the UK, immune cells and tumour cells from a affected person’s blood have been uncovered to one another in a lab to ‘educate’ the immune cells to recognise proteins related to the affected person’s most cancers. The immune cells have been then injected again into the affected person. Preliminary outcomes urged DCVax-L helps prolong survival for GBM sufferers.
In the meantime, a serious trial of a cannabis-based drug known as Sativex, used alongside chemotherapy, is ready to start out at 15 NHS hospitals.
‘GBM cells have been proven to have receptors to cannabinoids on their floor,’ explains Susan Quick, a professor of medical oncology and neuro oncology at Leeds College, who’s main the trial. Lab research have proven these medicine could sluggish tumour progress, significantly when used with temozolomide (a type of chemotherapy).
However as Graham Norton, CEO of The Mind Tumour Charity, factors out: ‘We have to guarantee mind tumour analysis will get to the extent of funding that has pushed such unbelievable progress in bettering survival in different cancers.’
He says that whereas the charity is investing an additional £40 million by 2027, ‘others, together with the pharmaceutical trade and the Government, have to take motion, too’.
Six months since their vacation, day-to-day life for the Fairweathers has modified past recognition.
‘Our plans for retirement have been modest,’ says Mary. ‘We have been trying ahead to valuable time collectively, working within the backyard and seeing our granddaughter develop up. It has all been wrenched away.’
In late Could, Jamie was in a position to stroll into the hospital. By June, he was in a wheelchair. In August, he misplaced the usage of the fitting aspect of his physique because the tumours induced paralysis. By mid-September he may now not feed himself or use the lavatory independently.
They now have a personal 24-hour carer, group care nurses and occupational therapists who’ve been out and in of the home ‘like nesting birds’, says Mary, flooding them with adaptive units.
‘The day the ceiling hoist arrived, I assumed I might collapse,’ says Mary. ‘Since you have a look at it and assume: “What is that this subsequent stage?” ’
Such is the velocity of devastation wrought by GBM, that hardly three weeks later the subsequent stage that Mary feared arrived.
On October 19, Jamie had a seizure lasting 40 minutes. Mary describes it as ‘essentially the most terrifying factor — I assumed I’d misplaced him that day’.
The seizure left Jamie paralysed. It’s a nightmare for a person who thrives on bodily problem.
Mary says: ‘Jamie has cycled the North Coast 500, the Sea to Sea Whitehaven to Sunderland, the Coast to Coast from Nairn to Loch Leven. He motorbiked 2,500 km in India, then helped construct a workshop there the place we sponsored 60 boys to be skilled in engineering in order that they’d have the ability to get jobs.’
The sight of the hoist carrying her once-strong husband makes her weep.
When he wakes within the night time, Jamie now lies motionless, legs trapped in helps, propped up with pillows and thinks about his dying and the way it will have an effect on his household. His solely want now could be to boost consciousness of GBM.
‘It’s not nice for me at 61, however think about if you’re 28 and also you’ve simply had your first child,’ he says, as his eyes fill with tears once more. ‘It’s heart-wrenching to think about different households going by this; for the youngsters who’re given this dying sentence.’
He is aware of, at finest, he has months to stay however has set himself one final goal: ‘A tiny quantity of funding in analysis would make an enormous distinction to discovering remedies. It’s the fitting factor to do. I’d love that dialogue to start out in my lifetime.’