1992 was the year. John Major was Prime Minister, Freedom of Movement for Workers across Europe was in its infancy and it was my final year at University. But everything was put on hold that year by what started with a mystery virus.
In March, my brother Owen, 27 at the time, had been ill for several weeks, in isolation with a mystery viral illness. He was a serving Metropolitan Police officer being looked after at the police hospital in Hendon when a junior doctor spotted the signs and correctly diagnosed acute leukaemia. Fast forward one day and it’s life threatening. My parents drive 500 miles and are at his bedside. He stabilises after a week but insecure employment and the need to continue to pay their mortgage means they have to return to work.
Over the telephone, we decide that I will put my plans on hold and I will go to London. I haven’t started my dissertation, (the great procrastinator that I am – I’d been relying on the Easter break to crack it) and it’s due in six weeks along with my finals.
During the next month, I become familiar with fluid balances, chemotherapy, antivirals, antibiotics and beeping drip stands. Owen responds well and we return to his flat for him to recuperate. I shave off his remaining thick dark hair with a Bic razor, since it’s now falling out in clumps and clogging up the washing machine. We laugh at his new look…but cry privately.
My Mum gets a two-week period of leave and I return to Edinburgh to research and write. I read by day, write long-hand by night and every morning my friend Haley picks up a chapter, takes it to the library and types it on a MacIntosh computer. She was my life saver number 1.
I complete my final exams and then return quickly to London. Owen has had another round of chemotherapy; his immune system is flattened and he needs to stay inside the one bedroomed flat with me, 4 TV channels, his DVD collection and the Barcelona Olympics for company. It’s a hot summer and a very small top flat. I sleep on the sofa, he has the bedroom – he’s a night owl and I’m an early bird. The highlights of our day are when I go out for some shopping and I successfully select something that will tempt his dormant taste buds, or a football or music newspaper that might just put a smile on his face. Despite the predicament we are in, we became closer. We bickered as brothers and sisters do, but we reach a deeper understanding of each other and increased love and respect.
Returning to hospital for another round of treatment, Owen’s boss, Superintendent Colin, visits every week. They develop a strong friendship and mutual respect that lasts beyond this illness until Owen’s death in 1998, and he has continued to maintain contact with me. I’m worried about the mortgage payments on the flat; it already has negative equity and Owen is running out of sick pay. I enquire privately out of Owen’s earshot and Colin says don’t worry, the payroll file has been forgotten about and put in the bottom drawer. He was my life saver number 2.
Life saver number 3 was a team of professionals in the ICU. On the day that I get my degree results, Owen is in isolation being too unwell for people to get close to him. I shout my results through a glass screen and he nods his head in acknowledgement. Later that night, he is admitted to ICU with pneumonia and placed on a ventilator. The nurses tell us every statistic, from temperature, heart rate and kidney function through to oxygen levels. We are told to prepare for the worst and say our goodbyes, but to everyone’s surprise Owen survives. As the sedation is decreased, he writes notes to us as he cannot speak, and asks about the Tour de France – one of his favourite competitions which has just started. A television is placed at the foot of the bed but he sleeps through the highlights. We are all so happy to see this.
Fast forward to 2020 and it’s another mystery virus that has put the year on hold. The politics are similar but different, and Europe is in the news for different reasons. But now it’s just me and my Mum at home. My career is long established, though it did get off to a much slower uncertain start in the 1990s than my fellow graduates. I’m now working with a supportive employer, Leonardo, which has enabled me for the past few years to have a rewarding career and a better work life balance.
I am able to work reduced hours and can give my Mum increased support. She is as good as registered blind and in acute pain. However, thanks to the lockdown and the internet, I can be with her more. I’ve even introduced my Mum to a few colleagues on Skype – all of whom she describes as looking or rather sounding too young to hold such responsible jobs! The highlights are the same as 1992 – food shopping once a week for something interesting that she might eat, but this time we have Netflix and iPlayer, and I’m able to watch programmes with her and describe the scenes. She also has an Alexa. We’ve always been close, but no doubt closer now.
The final “life saver” of this piece therefore, is my Mum herself. Despite her own challenges, as a retired nurse she still dispenses advice and guidance to friends and neighbours over the telephone. Last week she telephoned our friend Nigel. He was Owen’s neighbour, another life saver who regularly checked in on us back in 1992 in the flat. He was delighted to hear from her – but this time the shoe was on the other foot. Nigel was alone and had not spoken to anyone that day. He needed to hear that voice and have that connection.
On reflection, the support that is now available for carers and the understanding of their situation is certainly better than when I started on this journey. The charity Anthony Nolan, for whom I do fundraising, has a great network of support now in place for patients with blood cancer and their families. Young Carers are now recognised in their own right too and are getting a light shone on the work they do, though much more support is needed for them.
Further information and support available at:
