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My name is Anna and I am raising money for my incredible husband Stewart. Stewart is 43, lives in Little Eaton in Derbyshire with me and our 6 year old boy William and works full time in the University of Northampton IT department.
Stewart has been living with an incurable brain tumour since 2011. He received a successful course of chemotherapy and radiotherapy in 2013/14 which has enabled him to live his life to the full since then.
In late December 2021 Stewart experienced a change in symptoms and following an urgent MRI scan we received the devastating news that Stewart’s tumour had begun to grow again. Stewart was put onto a three month course of chemotherapy and after the 3rd cycle, he had another scan. We found out that the chemotherapy had not had an effect on the tumour which had continued to grow, leaving ourselves, Stewart’s parents and our family and friends heartbroken.
On Wednesday 4th May, I left for work as usual leaving Stewart to get ready to walk William to school. He was upstairs and suddenly felt numbness spreading all of the way down the left side of his body. Stewart knew he would not be able to walk down the stairs and shouted to William that he was not feeling very well. Stewart tried to call me at work but couldn’t immediately contact me and he rang our friend next door for help and to ask her to take William to school. Stewart somehow made it down the stairs to let her in and she enlisted the help of another friend who lives across the road to take him to hospital. This was extremely frightening for William who had suddenly seen his Daddy becoming unwell and unable to walk – a complete contrast to the Daddy who was playing football in the garden with him the previous evening. He had to go to school not knowing if his Daddy was okay and describes that he just saw Stewart’s hands sliding down the bannister as he lowered himself onto the floor.
Stewart was taken to the Emergency Department where his symptoms were attributed to the tumour progression despite being on the opposite side of his body – the tumour affects the right side only. He was kept in hospital for observation and an MRI head scan was completed – this in fact showed that Stewart had had a stroke, which was as a result of the tumour. A Neurologist reviewed Stewart and said in his experience he did not feel that Stewart would be suitable for further chemotherapy – sending us into a state of panic and uncertainty as to what the future held.
We met with the Oncologist two days later who advised that Stewart could trial a different chemotherapy for another three cycles, albeit at a lower dose. He told us that if this chemotherapy was not effective then there are no alternative treatments funded by the NHS, apart from possible clinical trials. Leaving us with privately funded treatment as our only option, should we need it.
Since the stroke, life as we knew it completely changed as we have had to adapt to a new “normal”. Stewart was discharged from hospital only able to mobilise short distances indoors with a zimmer frame and needing help with many of his daily activities. An Occupational Therapist at the hospital gave him several aids to enable him to be as independent as possible. However, I have had to take time off work to care for him and to look after William, managing home life as best as I can do. By nature, Stewart is so active around the house and involved with being a Daddy that it has been a huge adjustment for us all.
Emotionally it is so tough on us all – William is very young and it is difficult to know exactly how he is being affected. We are trying to keep things as normal as possible for William, which is taking a lot of effort and determination from both of us. It is incredibly hard to live normally and remain positive for William whilst Stewart is recovering from a stroke and undergoing chemotherapy and we are all living with an uncertain future. Stewart wants to be here for William for as long as he possibly can be.
Stewart is now on his 3rd cycle of a third type of chemotherapy and we are researching the best alternatives for Stewart should we need them. One treatment we are looking into for Stewart would be Immunotherapy in Germany and we are currently self funding genetic testing of the original biopsy sample from 2013 as the NHS would not facilitate this. We are very fortunate to be able to use some of the money that has been raised so far to achieve this. The treatments are expensive and there are associated additional travel and insurance costs. We are therefore faced with the reality that we need to crowd fund to finance future treatment as needed. We have also used some of the money to pay for private consultations and medication from the Care Oncology Clinic protocol.
We are blown away with how generous people are being with their donations. We've held some amazing fundraising events and have more planned. Many of our fabulous family and friends have organised events and completed sponsored challenges in order to reach out to the widest network of people.
Stewart has been living with an incurable brain tumour since 2011. He received a successful course of chemotherapy and radiotherapy in 2013/14 which has enabled him to live his life to the full since then.
In late December 2021 Stewart experienced a change in symptoms and following an urgent MRI scan we received the devastating news that Stewart’s tumour had begun to grow again. Stewart was put onto a three month course of chemotherapy and after the 3rd cycle, he had another scan. We found out that the chemotherapy had not had an effect on the tumour which had continued to grow, leaving ourselves, Stewart’s parents and our family and friends heartbroken.
On Wednesday 4th May, I left for work as usual leaving Stewart to get ready to walk William to school. He was upstairs and suddenly felt numbness spreading all of the way down the left side of his body. Stewart knew he would not be able to walk down the stairs and shouted to William that he was not feeling very well. Stewart tried to call me at work but couldn’t immediately contact me and he rang our friend next door for help and to ask her to take William to school. Stewart somehow made it down the stairs to let her in and she enlisted the help of another friend who lives across the road to take him to hospital. This was extremely frightening for William who had suddenly seen his Daddy becoming unwell and unable to walk – a complete contrast to the Daddy who was playing football in the garden with him the previous evening. He had to go to school not knowing if his Daddy was okay and describes that he just saw Stewart’s hands sliding down the bannister as he lowered himself onto the floor.
Stewart was taken to the Emergency Department where his symptoms were attributed to the tumour progression despite being on the opposite side of his body – the tumour affects the right side only. He was kept in hospital for observation and an MRI head scan was completed – this in fact showed that Stewart had had a stroke, which was as a result of the tumour. A Neurologist reviewed Stewart and said in his experience he did not feel that Stewart would be suitable for further chemotherapy – sending us into a state of panic and uncertainty as to what the future held.
We met with the Oncologist two days later who advised that Stewart could trial a different chemotherapy for another three cycles, albeit at a lower dose. He told us that if this chemotherapy was not effective then there are no alternative treatments funded by the NHS, apart from possible clinical trials. Leaving us with privately funded treatment as our only option, should we need it.
Since the stroke, life as we knew it completely changed as we have had to adapt to a new “normal”. Stewart was discharged from hospital only able to mobilise short distances indoors with a zimmer frame and needing help with many of his daily activities. An Occupational Therapist at the hospital gave him several aids to enable him to be as independent as possible. However, I have had to take time off work to care for him and to look after William, managing home life as best as I can do. By nature, Stewart is so active around the house and involved with being a Daddy that it has been a huge adjustment for us all.
Emotionally it is so tough on us all – William is very young and it is difficult to know exactly how he is being affected. We are trying to keep things as normal as possible for William, which is taking a lot of effort and determination from both of us. It is incredibly hard to live normally and remain positive for William whilst Stewart is recovering from a stroke and undergoing chemotherapy and we are all living with an uncertain future. Stewart wants to be here for William for as long as he possibly can be.
Stewart is now on his 3rd cycle of a third type of chemotherapy and we are researching the best alternatives for Stewart should we need them. One treatment we are looking into for Stewart would be Immunotherapy in Germany and we are currently self funding genetic testing of the original biopsy sample from 2013 as the NHS would not facilitate this. We are very fortunate to be able to use some of the money that has been raised so far to achieve this. The treatments are expensive and there are associated additional travel and insurance costs. We are therefore faced with the reality that we need to crowd fund to finance future treatment as needed. We have also used some of the money to pay for private consultations and medication from the Care Oncology Clinic protocol.
We are blown away with how generous people are being with their donations. We've held some amazing fundraising events and have more planned. Many of our fabulous family and friends have organised events and completed sponsored challenges in order to reach out to the widest network of people.
Should anyone wish to donate or complete a sponsored event to help Stewart we will be eternally grateful. We are all hoping that this chemotherapy will work and future treatment will not be required. Therefore, any funds raised that are not used for treatment will be shared between the Brain Tumour Research charity and The Brain Tumour Charity. Both of these charities provide valuable information and support to people facing a brain tumour diagnosis. Brain tumours are one of the most underrepresented cancer in terms of awareness and research.
The shocking statistics speak for themselves:
· Every two hours, someone in England is diagnosed with a brain tumour
· Only 12% of brain tumour patients survive beyond five years of their diagnosis, whereas over 70% of breast cancer and over 40% of leukaemia patients survive beyond five years
· Brain tumours are the chief cause of cancer deaths in children and young people - in 2015, the number of children dying from cancer was 194, with brain tumours taking 67 young lives and leukaemia 46
· Brain tumours continue to kill more children and adults under the age of 40 than any other cancer
Reference: Brain Tumour Research
Thank you for reading Stewart’s story. We are desperate to raise awareness of this devastating disease which destroys lives and families. We want to ensure that Stewart has the opportunity to receive the best treatments available to give him as much time with me and William as possible.
The shocking statistics speak for themselves:
· Every two hours, someone in England is diagnosed with a brain tumour
· Only 12% of brain tumour patients survive beyond five years of their diagnosis, whereas over 70% of breast cancer and over 40% of leukaemia patients survive beyond five years
· Brain tumours are the chief cause of cancer deaths in children and young people - in 2015, the number of children dying from cancer was 194, with brain tumours taking 67 young lives and leukaemia 46
· Brain tumours continue to kill more children and adults under the age of 40 than any other cancer
Reference: Brain Tumour Research
Thank you for reading Stewart’s story. We are desperate to raise awareness of this devastating disease which destroys lives and families. We want to ensure that Stewart has the opportunity to receive the best treatments available to give him as much time with me and William as possible.