Diana Nilsson Shafikova, 35, from London, lost her husband Gunnar to a Glioblastoma brain tumour in September last year after he was diagnosed three and a half years ago. He left behind Diana, his partner of 13 years, and his nine children including the children he had with Diana - Fjordess, 11, Trolle, 9, Landess, 7 and Vinde, 4.
Diana is sharing her story to illustrate the difficulties the family faced since Gunnar’s diagnosis and the trauma she and her family have experienced since he passed away.
Diana said: “When I first saw Gunnar, my life changed immediately. I knew that nothing would be the same ever again. I was about to graduate from the University and he was a successful businessman, he was married with children and we lived in different countries – neither of us dared to think we could be together.
“We were pen pals for some months and met several times too. We understood very early we were soulmates. It's like we knew each other for a very long time and it was a very strong feeling we couldn't fight. We couldn’t keep away from each other.
“Gunnar wasn’t the type of person to have a relationship outside of his marriage – he was a loyal to his family and I never expected him to take steps to change his family situation. We were heartbroken at the thought of not being able to be together and we often tried to live in the moment. But what we had together was unquestionable – it was something worth dying for.”
It was in the autumn 2007 when Diana was in London studying at St Martin’s School for Art and Design that Gunnar told her that he couldn't picture his life without her. They had their first daughter in August 2009 and they got married in March 2011. The family split their time between homes in Stockholm with Gunnar's older children and Geneva where they were based themselves. They also spent a lot of time in London for work.
Diana said: “London has always been our place. It was where Gunnar first told me he loved me, it’s where we attended business meetings and looked forward to them being over so we could walk around the city with no agenda. It's where two of our children were born. It's the place we both loved and we felt at home there. Life was wonderful. Gunnar really valued love – he saw it as the ultimate blessing.
It was in February 2017 that Gunnar had his first known symptom – a seizure. He was offered a biopsy at a private medical centre in Spain where they had now moved to but Gunnar declined it and the tumour was not diagnosed properly. They travelled to Switzerland for a second opinion where Gunnar had an MRI scan and a number of tests, including one for tumour markers, but they all came back negative. The family were relieved to be told that it wasn’t a tumour but inflammation.
But Gunnar continued having persistent headaches, short-term memory problems and then he a second seizure a few weeks later in April. This was also put down to the inflammation rather than the Glioblastoma tumour which wouldn’t be properly diagnosed until months later.
It was following his diagnosis that Gunnar told Diana that he had experienced strange sensations in his head in the winter prior to his diagnosis. Around Christmas that year, Diana recalls talking to Gunnar when he suddenly froze for 30 seconds and seemed unresponsive whilst his eyes slowly moved from one side to the other. It was an isolated incident so they didn’t seek medical advice at the time.
Gunnar was hospitalised with severe brain swelling in May 2017 and received a high dose of dexamethasone. This seemed to ease his symptoms. Doctors also told the family that if Gunnar had a Glioblastoma and had been having symptoms for so many months then he wouldn’t be alive by now.
The family then moved to Sweden yet Gunnar’s headaches were still persistent and over-the-counter medication didn’t help. It was only then that the Glioblastoma was diagnosed – which was a huge shock. He had an operation in June 2017 at the Karolinska University Hospital in Stockholm. The tumour was 7cm x 7cm and the doctors questioned how Gunnar could have lived with it for so long without any treatment.
Gunnar then had chemotherapy and radiotherapy, which left him very weak, and various medications and supplements to support a healthy diet. He struggled to eat and he lost three stone in weight - some days he couldn't eat anything else other than ice lollies which seemed to ease his nausea.
Following the treatment, Gunnar recovered well and regained much of his strength. Gunnar did still have the occasional seizure and he was told that he had a 30% chance of developing Epilepsy. He had some problems with his vision too but this got better over time and by the summer 2019 he was able to drive again. Due to the location of the tumour, Gunnar also developed mild aphasia and often struggled to find the right words which, as a former public speaker, hit his confidence. They spent the summers of 2018 and 2019 travelling around Europe and making memories together as a family.
It was during the routine MRI in September 2019 that the radiologist discovered some new growths in Gunnar’s brain including one which was 1cm in diameter although the original tumour site in left temporal lobe was not affected. This had been the family’s worst fear and Diana had been so afraid of a recurrence that she had long had trouble sleeping as she felt she always had to be alert should Gunnar have a seizure.
Diana said: “This is when I really started grieving. I remember doing the school runs on crispy November mornings and weeping on my own on the way back. But I never showed it to Gunnar, I wanted him to know that we would keep fighting till the end, which we did. We were both still determined – we never talked about if or when we could lose each other.”
Gunnar had radiation treatment alongside chemotherapy at a private medical centre in Madrid. He finished his treatment just before Christmas but it was on 2 January 2020 when he developed severe brain edema and was blue-lighted to hospital and spent a month having further treatment.
He recovered well during January and the family moved back to London for work. However, due to the Covid pandemic increasing wait times to get follow-up or check-up appointments in the UK, Gunnar travelled to Sweden where he had previously been looked after, for medication and routine MRI scans which came back all-clear. The family enjoyed the springtime back in London, despite the pandemic.
It was prior to one of his return flights in July that Gunnar had another seizure and he was kept at the hospital in Stockholm. Gunnar was given medication and he monitored for about a week before he was moved to neurological rehabilitation centre to help with his mobility.
Despite assurances that his progress was good, Gunnar’s condition began to worsen and soon he was unable to keep mobile at all, he wasn’t eating, had no energy and was losing the ability to speak. Due to the pandemic, Diana and their children were also unable to visit him.
A further MRI scan confirmed that the tumour had spread to the basal ganglia, the cerebellum and down to the spinal cord. The family was told that nothing could be done. Diana arranged a flight and the medical care he would need to bring Gunnar home for what would become his final days.
Gunnar spent two days at home where Diana cared for him, including spoon-feeding his meals, before he was moved to Charing Cross Hospital so he could receive the specialist care he required as his condition deteriorated.
Gunnar was later moved to St Johns Hospice where Diana visited him every day in between the school runs and would tell the children how he was doing when she picked them up. She took family photos in to the hospice for Gunnar to have with him as well as his favourite foods until he was unable to eat any more due to problems with his swallowing.
Around 5.00am on 16 September, after 11 days in the hospice, Diana was contacted by the hospice who said that Gunnar’s breathing pattern had changed and they encouraged her to visit as soon as she could.
Despite her internal panic, Diana got the children ready for school as usual and ran straight to see Gunnar. The children had only just returned to school due to Lockdown so she wanted to maintain some normality for them.
Diana said: “Gunnar was peaceful and he smiled at me when I came in. I kissed him, I held his hand and I knew that he wouldn’t want to sit there in silence. We needed a little bit of a party vibe. Gunnar loved music – in fact, he made several dance songs himself with me on vocals. I found all his favourite songs and started to make a special playlist that I later shared with all his children and our friends.
“I kept talking and we went through our favourite memories, many of them from London. I reminded him when he went straight to the DJ in Metropolitan bar and asked him to play Suspicious Minds by Elvis Presley and when he made a band play ABBA’s Dancing Queen on the beach in Bali.
“A friend brought our children to the hospice later that day and we had a lovely afternoon together hugging and kissing but deliberately not saying goodbye. It was beautiful. Gunnar passed away just 40 minutes after the children had left to go and stay with a friend. We couldn’t have wished for a better day and the hospice staff were amazing to us all.
“I stayed by his side until early morning just lying close. It was hard to feel the warmth of the body you love leaving it. I took off Gunnar's rings and went home holding them the whole train ride back. I met the children after school and told them what had happened. They were devastated and broke down in tears. I took them home and let them decide whatever they wanted to do and the schools supported them so well.
“I was always open and honest with the children about the illness. They knew something was growing inside Daddy's head, that there was no cure, and that we simply didn't know what would happen. I always escaped defining things. There was no C word. I never let anyone tell my children that their father was going to die as I never wanted children to see Gunnar that way. I don't regret it. We kept fighting till the end and children knew it.
“My goal was to instil in them the gratitude for our time with Daddy, appreciation of the memories rather than a desperate sadness when thinking about him.”
Diana plans many ways in which to keep Gunnar’s memory alive. She wants to make baby blankets from his clothes for his grandchildren to use in the future, turn his suits into clothes for their children, make fingerprint jewellery for the children to wear, finish the songs they had written together and plant a commemorative tree. Diana is also now adjusting to life as a single parent and running the family business.
She said: “I let the children be their own bosses a little more now as we all adjust to our lives without their Daddy. I am definitely not the same person anymore and I still love Gunnar more with every day.
“I had always supported the business, but with Gunnar’s help, even when he was unwell. I never thought that I would have to do this on my own and it is difficult to make a business professional out of myself for the sake of Gunnar. Without a doubt, my life has been turned upside down. From feeling safe, I now feel like I'm standing in front of an unfriendly crowd.
“The pandemic also stole so much from us - the time in the hospital, the missed treatment. We could have had more conversations, he could have expressed himself more when he still could. There was still so much which will remain untold between us and the children.
“I was numb for months. The ice of grief is only just beginning to melt. I still wear my wedding ring and I always will. For some time, I was haunted by the image of my husband’s lifeless body and how different it was to the image of the strong, clear and kind-eyed man I had known. But, as well as battling with rage and grief, I feel so much love and gratitude. I am so incredibly thankful for the time I got to spend with this unique and wonderful man - those incredible 13 years which were filled with love and adventure. I feel like I own a box full of treasured memories. I loved every moment with him.
“I often feel sad looking at the happy families in school, with dads participating and caring for their children. My children haven't had that for a while and they won’t have the simple things like football or bicycling together or Daddy's tight cuddles. My heart aches for them. I know this sadness is here to stay for all of us – that is a sign of how much we all love and miss Gunnar.
“But I also made an important decision important for my life - the brain tumour took Gunnar away but it can't ruin my life. This is selfish maybe but I am working on finding the way to make sure I have equally happy life ahead of me. I am 35 and I want to live. After these difficult years, I want to understand who I am on my own, find my voice and use it.
“My advice to others would be to never lose hope and to live your best life regardless of where you are in your brain tumour journey. The Brain Tumour Charity is also a fantastic source of information. Dare to keep living, planning and dreaming – and document as much as possible. Worry less about tomorrow. Whether you're a patient or a carer - life full of love is worth living.
“My husband will never leave me again - he is a part of who I am. True love never dies even though a person can. And at the end, that is all that matters.”