For nearly five decades, one person was by my side – my wife, Raisa. We were never bored and always happy and in love, though we rarely talked about it, preferring to cherish our mutual respect and affection. Today her death, and the suffering that preceded it, still haunts me: how is it that I was unable to save her?
It was in 1951, six years after the end of the Second World War and two years after she enrolled as a philosophy student at Moscow State University, that I met Raisa Titorenko. She was and is the most kind, beautiful and wise person I have ever met, the more so for her remarkable intelligence, which was the pride of her father, a railway worker, and mother, who was born a Siberian peasant and remained illiterate until her twenties.
These kind and humble people raised a wonderful daughter. From the moment we met, she became my greatest source of strength and inspiration. Her diagnosis with leukaemia was the most unbearable shock I have ever known. I was aware that what had happened to us and to our country weighed heavily on Raisa. Right up to the last moment I believed she could be saved, and I couldn’t reconcile myself to what had happened. She fought for her life courageously, and patiently endured whatever the doctors did to her. I couldn’t bear to look at all this.
Raisa’s death in September 1999 cast a shadow over my life from which I shall never be free. I think of her every day, every hour. Time doesn’t heal this sorrow, and I miss her as much today as the minute I finally said goodbye to her.
Meet the patients and doctors of GOSH
Meet the patients and doctors of GOSH
1/9 Elliott Livingstone
Two-year-old Elliott is a “cheeky” little boy who has a Thomas the Tank Engine sticker on his Berlin heart machine, which has kept him alive since his own heart failed eight months ago. Elliott has two tubes pumping blood around his tiny body. It keeps him alive but the machine has left him confined to the wards of Great Ormond Street Hospital until a new heart is found
2/9 Melissa Strickland
As the ward sister on Koala Ward, Melissa Strickland leads a nursing team with the challenging job of looking after children with craniofacial and neurological conditions. “You have to have all the skills and knowledge to do this job but personally for me you cannot do it unless you have passion but also compassion,” she said. “You don’t get used to the sad side of things but you do learn to manage it.”
3/9 Amy Willis
Amy Willis carries a discreet black medical bag everywhere she goes. It contains the cutting-edge HeartWare device that is keeping her alive. A smaller, more advanced version of the Berlin artificial heart, it was fitted in April after she was emergency airlifted to GOSH from Alder Hey hospital in Liverpool. The device means that 14-year-old Amy can be home in Flintshire this Christmas while remaining on the heart transplant waiting list. She is doing well but 15 per cent of patients with a HeartWare device or Berlin heart die while waiting for a new heart, so money raised by the appeal will also go to help researchers identify ways to keep children alive while they await transplant
4/9 Myra Bluebond-Langner
Professor Myra Bluebond-Langner represents the vital work of the Louis Dundas Centre for Children’s Palliative Care, GOSH’s world-class centre dedicated to research and care for children with life-limiting illnesses. The LDC is named in honour of Louis Dundas, a four-year-old boy who died in “unspeakable pain” after suffering a brain tumour in April 2008. Its aim is to ensure that no child suffers unnecessarily in their final days. Money raised from The Independent’s Give to GOSH appeal will go to fund the team’s work to manage pain, and also fund vital research into palliative care in children across the whole of the UK. Professor Bluebond-Langner, who heads the research, said: “Paediatric palliative care is a relatively new field where practice has outstripped research. We look to change that.”
5/9 Finella Craig
Together with with Professor Myra Bluebond-Langner, Dr Finella Craig represents the vital work of the Louis Dundas Centre for Children’s Palliative Care, GOSH’s world-class centre dedicated to research and care for children with life-limiting illnesses. The LDC is named in honour of Louis Dundas, a four-year-old boy who died in “unspeakable pain” after suffering a brain tumour in April 2008. Its aim is to ensure that no child suffers unnecessarily in their final days. “One of the worst experiences for a family is to witness their child in pain and discomfort, and for them to feel totally powerless to do anything about it,” said Dr Craig, a consultant in paediatric palliative medicine at GOSH since 2002. Money raised from The Independent’s Give to GOSH appeal will go to fund the team’s work to manage pain, and also fund vital research into palliative care in children across the whole of the UK.
6/9 Rowan Pethard
Like most little boys, Rowan Pethard loves playing football. At the start of 2015 the seven-year-old Spurs fan baffled his doctors in Hemel Hempstead with a string of coughs, colds, tummy bugs, aches, pains and rashes. It wasn’t until quite late on that doctors discovered he had leukaemia. He spent two days in intensive care while he had emergency chemo. He has two years of follow-up treatment ahead. “He’s amazing, a little superhero,” his mum said. “It makes it easier for his father and I and his brother to cope.”
7/9 Martin Elliott
Paediatric heart and lung surgeon Martin Elliott, 64, is one of the longest serving doctors at GOSH, leading groundbreaking research and treating thousands of patients over the past 30 years. His work has bridged the gap between surgery and research with skills ranging from heart-bypass surgery to correcting congenital lung disorders.
8/9 Ralph Frost
For Ralph the hardest thing about having to live at GOSH while he waits for a new kidney isn’t missing his toys. He has plenty of those and can terrorise the nurses by pushing his little red motorbike down the corridors of Eagle Ward. The hardest thing for the six-year-old is battling not to cry out during his nightly dialysis sessions. “It really hurts,” he said. “But the other kids are sleeping and I don’t want to wake them up.” Ralph suffers from nephrotic syndrome and is currently waiting for a kidney from his father, Nick. He’s called the kidney “Chase” and his parents, who have been trained to operate his dialysis machine, hope to be home by Christmas
9/9 Lynsey Steele
The strongest praise for Lynsey Steele, 33, comes from the parents of the children she helps. “The children here wouldn’t get by without Lynsey,” said Ralph’s mother Amie Frost. “If she wasn’t here then we’d have cracked up.” Lynsey’s role, which is funded by the Great Ormond Street Hospital Children’s Charity and will be supported by The Independent’s Give to GOSH appeal, is to help children play and relax, but also to have the difficult conversations explaining their treatment
When faced with grief, it is a natural human response to consider how, if at all, the spirit of the dead can live on – somehow. Good should come of a life that has been so good. It was with this feeling in mind that, well over a decade ago now, I decided to set up the Raisa Gorbachev Foundation with my friends Alexander and Evgeny Lebedev. Our aim was simple: to raise money for a cause that Raisa, an activist and campaigner until her last breath, always believed in: helping sick children.
The suffering or death of children is an unbearable horror that no just world can tolerate. We have worked very hard for many years to rid the world of this sadness. The foundation has raised more than £10m in London, much of it given to Marie Curie.
We have also raised millions for the Raisa Gorbachev Memorial Institute for Children’s Haematology and Transplantation in St Petersburg. The staff and medical team there perform daily miracles of the kind that one can also witness at Great Ormond Street Hospital in London, and the Louis Dundas Centre for Children’s Palliative Care that is affiliated to it. That is why I have decided to donate a remaining £100,000 to these causes, split 50/50 between GOSH and the centre named after Raisa in St Petersburg.
I know, having read of the amazing response of your readers to this newspaper’s Give to GOSH campaign, that, like my late wife, you want to help reduce the suffering of children. This £100,000 may seem a small amount – but to the parents of those suffering children which it will help, it is nothing of the sort.
I commend this newspaper on its great campaign and hope we can continue to work together to save children affected by cancer. I know it is what Raisa would have wanted us to do.
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