Olya's Story.
"My son was diagnosed with a brain tumour before his 1st birthday..."
"I struggled to accept it and never talked about it - simply lied to my friends that everything was fine in my life."
"I could not believe that it was happening to my baby, to us."
"There was no one else to talk to outside the family - it is not something a mother with a healthy child would understand"
"I kind of thought that everyone who would find out would think that I had failed as a mother"
"...that's exactly how I felt about myself"
Olya
(DLF Cherry Blossom Mum)
"No One Ever Asked Me how I Was Coping".
"We decided to keep our son's diagnosis private"
Some people knew of course but most of the time they did not know what to say, so it was decided between Alexander's dad and I, that we should keep this to ourselves and pretend that we were a happy family. In some way we did have a very busy and full life - we both worked, the boys went to good schools, played musical instruments, skated, performed, we travelled a lot and we met with friends...
...but underneath there was my fear, my loneliness, my despair, feeling that I am on my own in this battle for my son's health. That it is my responsibility to make all the important decisions - about chemo and surgeries, that it was my fault that it happened to Alexander, that it was me who failed to protect my child.
"The fear and emotional turmoil were overwhelming me, big things, small things were piling inside my head - the eyes of the doctor who said Alexander had a tumour, the first meeting with our oncologist when the room suddenly went dark, the weird feeling I got when I signed the document where I agreed to my son's operation and was aware of the risk that he might not come out of the theatre...."
Olya
"At that time I was 26.
I did not know if there was any help available.
I did not know about charities and organisations which can support, help and generally make your family's life a bit easier."
(Olya)
We did everything ourselves.
Alexander's dad and I both worked trying to handle jobs, children's schools and activities. Doing things with Alexander all the time to make sure that he had a full and rich life, which he completely enjoyed - everything is a lot harder when your child has special needs - it is harder to find a baby-sitter, harder to buy tickets (they always have to be in the front row) etc.
We had to take time of work because we were both working in professional environments.
We felt helpless when our bosses told us that they understood us on a personal level but jobs need to be done and deadlines could not be missed. "What do you do if 32 radiotherapy sessions are required? Do you take 32 half days or 32 full of annual leave?"
"We felt Isolated".
Alone
Sometimes, things got too hard and we had to take time of work due to stress - Alexander's dad developed some kind of depression and there were months he simply could not go to work. Again, no one from the local services (NHS, community, local authority etc. who were aware of what was going on) ever asked us - "...guys how are you coping, do you need money , are you able to work?"
When Alexander was ill and he had to stay at home or in the hospital for many years we did not know that we could get someone to come and spend time with him - not because we could not look after him but because he needed to see someone else's face.
No one
No one to send us in the right direction to find things that would help Alexander and us to make friends with people who were going through the same thing and to find out about charities that support people like us.
We were told we could not take time off when we need it etc. I wish someone on our behalf explained to our bosses what we were going through, but there was no one.
"We needed all kinds of support."
Hear Olya's story
The last 8 months of Alexander's life we spent at the hospital. It was just awful.
I did not know that he was not going to make it and desperately thought - what else can I do to make him better. Fear, sleepless nights, arguments with doctors - we never had any support from anyone and it would have made some the difference.
When Alexander died I felt my life was over. I knew I had to carry on but I honestly did not know how. I had to function - work, meet people, chat and I had to leave my job in the City to survive.
We needed all kinds of support - legal as they told us that we had lost parental responsibility when Alexander turned 18,. Psychological - they offered us a psychologist but she said that we cannot say anything bad to her as she is under obligation to write down everything we say and report us if we say something wrong. None of us could work at that time and we did struggle financially.
Looking back, I am sure now, Alexander's dad needed to talk but I begged him not to tell anyone about what we were going through, somehow I was hoping that when it went away we will pretend that it never happened.
Someone who send us in the right direction to find things that would help Alexander and us to make friends with people who are going through the same thing and to find out about charities that support people like us
"I miss Alex".
Today
"I feel like we were failed by the state and we were not supported emotionally or financially."
No one asked me how I was coping
If not for my friends and family and the pupils I teach, I don't know how I would have survived."
Alex was a green fingered boy! He won many competitions in Hampshire and was named the 'person of The Year' for growing plants and vegetables.
"The image on the left is a plant that was given to him for his last Christmas in 2014 as a gift and mysteriously the plant just carried on growing for the last 9years."
Olya
"Things Need to Change."
The Govt cannot reach everyone but ...
"As bereaved parents, we have to be brave and strong in order to cope and rebuild our lives. Our other children are hurting and have to live with the grief of losing their siblings for the rest of their lives. There should be government funded services and NOT charities who work with families like ours in order to provide a sustainable lifeline to families like ours."
"Without this, charities like the DLF struggle because they often have to balance work, family life, personal health issues etc as they try to keep the charity running. Families like ours need financial support to survive the grief and live healthier lives. For example, I need to raise 3000 for private back treatment because it is not available on the NHS..."
(Continued below)
(Olya - DLF Cherry Blossom Mum)
"Thank You DLF".
"...the govt can allocate funds and invest in services that reach more families."
"How many charities can afford to help me with the current cost of living crises?! No one can deliver any service consistently and passionately all the time without being paid for it. Certain things need to be in place at the government level to protect and support families who have lost children yo brain tumours and other life limiting illnesses."
"Higher care quality standards need to be enforced to ensure that the tight training is in place for oncology staff to ensure medical negligence, errors and medical abuse is non existent. The Govt cannot reach everyone but they can allocate funds and invest in services that reach these families at local and regional level."
(Olya - DLF Cherry Blossom Mum)
"I now think that we both could have benefited from a sympathetic ear, maybe from a specially trained therapist who would have given us an opportunity to talk about how we felt."
Olya
DLF - What We Do
We have captured the reality of Olya's story to illustrate what many of our families are going through right now.
We understand Olya's feelings resonates across many families living with children with terminal cancers or those who have lost children to cancer. Through our lived experience and offer friendly & non-judgemental wellbeing support, to our children and their parent carers like Olya and her family. We want to create a safe space where difficult emotions and issues can be safely addressed. Challenges our children and their families now have to learn to how to cope with.
First by offering friendship and peer support, we are here to offer a support mechanism that can guide our families on how to manage stress, access important resources, meet new friends, receive impartial advice and learn how to navigate the health and social care services in the community.
"You Are Not Alone"
Please click below to make a referral.
"I now think that we would have benefitted from someone who would support our righteous intention to look for a second opinion, help us to research and help us to contact other specialists."
Olya
"...the govt can allocate funds and invest in services that reach more families."
"Today, I have since started a charity that provides musical therapy for care homes and schools."
"My work involves singing and dancing because I work with children, vulnerable people and the elderly. I am surrounded by people all the time - but to be honest, really deep inside I still feel alone."
"I feel no one really knows what to say to me - even my best friends who try to help - until I met Angela from the DLF."
(Olya - DLF Cherry Blossom Mum)
...
"Today, I have since started a charity that provides musical therapy for care homes and schools."
"My work involves singing and dancing because I work with children, vulnerable people and the elderly. I am surrounded by people all the time - but to be honest, really deep inside I still feel alone."
"I feel no one really knows what to say to me - even my best friends who try to help -
until I met Angela from the DLF."
"Finally, it feels like I've found that friend who really understands.
Angela, from the DLF, has given me the time and attention that I need, she sends me flowers and lovely gifts that make me feel cared for. Who doesn't value being treated like a person and knowing someone else cares about you." :)
"Most of all it's good to know that
I do not need to pretend with her and
I can just be myself. "
Olya