C is for Cure - A mother's experience in her own words. Please support in the first instance by clicking 'like' on the campaign Facebook Page
(link at end of article).
"My son was diagnosed in September with stage 4b lymphoma, he has had Chemo and it didn't work: he is now spending most of his days in and out of hospital. To be honest he is my hero as he has taken this on the chin and is staying strong even when in the deepest pain, during the time since he was diagnosed the thing that struck me the most is that there is little or no emotional support for him or my other 3 boys.
"My son was diagnosed in September with stage 4b lymphoma, he has had Chemo and it didn't work: he is now spending most of his days in and out of hospital. To be honest he is my hero as he has taken this on the chin and is staying strong even when in the deepest pain, during the time since he was diagnosed the thing that struck me the most is that there is little or no emotional support for him or my other 3 boys.
There is the fantastic teenage cancer trust but he is too old for their services. They even have a beautiful new ward in a local hospital, but it is for young people up until the age of 19. Being 21 I know he is officially an adult but to be honest he is still very much a child needing comfort and guidance and needing to believe he can still fulfil his dreams.
Any support group we have been to are mostly made up of older people which in itself is not a problem and I’m glad they exist but he doesn’t relate to any of them being a young black man who is educating the doctors on street slang: yes he is giving them a lot of jokes!
I feel a bit useless in this situation as medically I can do nothing: my child’s life is in the hands of strangers so I have felt compelled to do something. That is why I am now in the very early stages of setting up C is for Cure..
I aim to raise funds to:
a) Fulfil my son's lifelong dream, by sending him on a round the world trip when he gets a break from this horrible treatment. His hopes and dreams are crushed at the moment, as he can no longer work.
b) Raise enough funds, so that other families in this situation, from low economic back grounds can get some practical and emotional support and have a memorable experience to fulfil their own hopes & dreams once their treatment is completed.
I am also setting up a support group for young adults who have been affected by life changing illness/ disability and their siblings and family and finally I want to raise aware of how easily your life can be turned completely upside down in one day. ( the importance of loving your family today not tomorrow) I am asking who ever ( and to be honest the more the merrier) to help me to fund raise to make the above possible.
I am sorry if this is a little rambling I am a little tired as I have spent the best part of the week between the hospital and work. Thank you for showing concern and taking time out to show support."
L. Maher
Email: beatthebigc@gmail.com
C is for Cure on FaceBook:
https://www.facebook.com/pages/C-is-for-Cure/191900087564556
Please read this article on the BBC website: Cancer 'drives families into debt', says charity report
http://www.bbc.co.uk/news/health-16003013
'Two-thirds of parents of children with cancer surveyed by a cancer charity say they have been forced to borrow money to make ends meet.
Of the 245 families interviewed, 76% said that their child's illness had had a major impact on finances with two in three parents experiencing a loss of earnings. The survey was carried out by children's cancer charity CLIC Sargent.
It wants the government to ensure families get more financial support.
For their report, entitled Counting the Costs of Cancer, the charity also sought the views of 90 young people with cancer through an online survey, focus groups and telephone interviews.
Parents and young people told the charity that they spent on average £367 and £277 respectively on cancer-related expenses every month, and with treatment lasting up to three years, the bills soon mounted up.
This added up to a spending of £4,400 for parents and £3,325 for young people each year, the report said.
These costs included travel and car parking to get to hospitals and treatment centres, additional clothing for the child as a result of weight loss, food to supplement that available in hospital, and other costs such as telephone calls and accommodation.
'Under pressure'
The report found that of those parents who acquired debt, 41% borrowed £1,000 or more and 27% borrowed more than £2,000.
Six per cent of parents surveyed said they had turned to high interest, short-term loans to cope with the additional costs.
CLIC Sargent said it was concerned that government reforms would restrict families' options to financial support through the benefits system.
Lorraine Clifton, chief executive of CLIC Sargent said the cost of caring for children with cancer was often unexpected.
"Everyone is suffering in this economic climate but parents of children with cancer are amongst the hardest hit. The extra costs can be significant. It's shocking to hear that some families felt driven to debt in order to get through financially.
"We're dependent on the generous support of the public and other donors to fund our vital work to support young cancer patients, but the money we raise can only be part of the solution.
"We want to work with the government and other organisations to find better ways of ensuring young people and children with cancer, and their families, have the financial support they need."
The report also found a significant impact on the lives of young people who had cancer.
Five in six surveyed said that their quality of life had been affected and two in three young people felt they were less able to study well.
A spokesman from the Department for Work and Pensions said that people with terminal cancer are fast-tracked.
"In these cases we pay the highest rate care component of Disability Living Allowance immediately and unconditionally regardless of daily care needs.
"Under the new Personal Independence Payments (PIPs) we are introducing a new objective assessment and regular reviews to make sure people get the right levels of support."
(First published at: http://www.bbc.co.uk/news/health-16003013)
It wants the government to ensure families get more financial support.
For their report, entitled Counting the Costs of Cancer, the charity also sought the views of 90 young people with cancer through an online survey, focus groups and telephone interviews.
Parents and young people told the charity that they spent on average £367 and £277 respectively on cancer-related expenses every month, and with treatment lasting up to three years, the bills soon mounted up.
This added up to a spending of £4,400 for parents and £3,325 for young people each year, the report said.
These costs included travel and car parking to get to hospitals and treatment centres, additional clothing for the child as a result of weight loss, food to supplement that available in hospital, and other costs such as telephone calls and accommodation.
'Under pressure'
The report found that of those parents who acquired debt, 41% borrowed £1,000 or more and 27% borrowed more than £2,000.
Six per cent of parents surveyed said they had turned to high interest, short-term loans to cope with the additional costs.
CLIC Sargent said it was concerned that government reforms would restrict families' options to financial support through the benefits system.
Lorraine Clifton, chief executive of CLIC Sargent said the cost of caring for children with cancer was often unexpected.
"Everyone is suffering in this economic climate but parents of children with cancer are amongst the hardest hit. The extra costs can be significant. It's shocking to hear that some families felt driven to debt in order to get through financially.
"We're dependent on the generous support of the public and other donors to fund our vital work to support young cancer patients, but the money we raise can only be part of the solution.
"We want to work with the government and other organisations to find better ways of ensuring young people and children with cancer, and their families, have the financial support they need."
The report also found a significant impact on the lives of young people who had cancer.
Five in six surveyed said that their quality of life had been affected and two in three young people felt they were less able to study well.
A spokesman from the Department for Work and Pensions said that people with terminal cancer are fast-tracked.
"In these cases we pay the highest rate care component of Disability Living Allowance immediately and unconditionally regardless of daily care needs.
"Under the new Personal Independence Payments (PIPs) we are introducing a new objective assessment and regular reviews to make sure people get the right levels of support."
(First published at: http://www.bbc.co.uk/news/health-16003013)
