Living with Cancer living with hope
Donation protected
I have been battling a rare form of Cancer called Ewings Sarcoma since 2010. I was diagnosed at 17 and piggy-backed Cancer whilst trying to navigate my way through my early 20s. A lot of the conventional treatments have proved unsuccessful in the long term and I am now relying on radiotherapy for pain control and management.
The Ewings metastasised in 2012 and I have been living with that since, with new areas of disease working their way through my body and many surgeries to remove tumours where possible. In 2016 I underwent an operation on my pelvis which left me unable to walk for 6 months and coming back from that to walk, ride my bike and even snowboard was a challenge that I am so proud to have achieved, throughout this fight I have and will never give up because I refuse to believe that at 26 my body is failing me.
The last 8 years have been the only life I've known and all the hospitals have become far too familiar. Cancer has left me with a devastating legacy. It can be challenging to see friends have children, progress in their careers and make choices you will never be able to make; my pride in them conflicts with the opportunities that have been closed to me.
I have tried many wacky diets, fads and have significantly changed the way I approach my health in a way that has meant I have had to mature quickly and forget a lot of what makes your 20s such fun. It sounds like a cliché but I really do love the small things in life, like walking my dog, travelling in our camper, time with my family and even the changing seasons much of which I am finding harder and harder to do as the disease progresses.
I feel I have so much to give, and I understand this is said a lot but if I can contribute to the way which this cause is fought, it would mean the last 8 years have not been in vain. First I have to do everything in my power to stop this nightmare, that does not feel like my life, from becoming a reality.
This has potentially come in the form of a drug that is licensed and administered by the NHS but unfortunately not funded by them. It is different to treatment I have received in the past and has been used for some soft tissue Sarcomas. In some cases it can halt the growth of tumours which is what we hope it will do for me.
Time is precious, time is everything, there has hardly been a moment in over 8 years where I have been able to fully celebrate any effective treatment or had a breather from this disease. If I could experience the feeling of relief that the Cancer was halted, giving me a little more time, it would mean everything. Although the drug is expensive, the response time is around 3 months, so initially we are looking to fund the first 3 months. If it works, hurrah, but then we will have to fund on a monthly basis, and the real hard work begins.
I am good at helping others but not so much at accepting it myself so reaching out now is tough. Any little donation towards me receiving this drug to give me some time back is so massively appreciated. Hopefully if there is any success, the trial will count towards research for others in a similar condition.
Thank you for any support you are able to give.
The Ewings metastasised in 2012 and I have been living with that since, with new areas of disease working their way through my body and many surgeries to remove tumours where possible. In 2016 I underwent an operation on my pelvis which left me unable to walk for 6 months and coming back from that to walk, ride my bike and even snowboard was a challenge that I am so proud to have achieved, throughout this fight I have and will never give up because I refuse to believe that at 26 my body is failing me.
The last 8 years have been the only life I've known and all the hospitals have become far too familiar. Cancer has left me with a devastating legacy. It can be challenging to see friends have children, progress in their careers and make choices you will never be able to make; my pride in them conflicts with the opportunities that have been closed to me.
I have tried many wacky diets, fads and have significantly changed the way I approach my health in a way that has meant I have had to mature quickly and forget a lot of what makes your 20s such fun. It sounds like a cliché but I really do love the small things in life, like walking my dog, travelling in our camper, time with my family and even the changing seasons much of which I am finding harder and harder to do as the disease progresses.
I feel I have so much to give, and I understand this is said a lot but if I can contribute to the way which this cause is fought, it would mean the last 8 years have not been in vain. First I have to do everything in my power to stop this nightmare, that does not feel like my life, from becoming a reality.
This has potentially come in the form of a drug that is licensed and administered by the NHS but unfortunately not funded by them. It is different to treatment I have received in the past and has been used for some soft tissue Sarcomas. In some cases it can halt the growth of tumours which is what we hope it will do for me.
Time is precious, time is everything, there has hardly been a moment in over 8 years where I have been able to fully celebrate any effective treatment or had a breather from this disease. If I could experience the feeling of relief that the Cancer was halted, giving me a little more time, it would mean everything. Although the drug is expensive, the response time is around 3 months, so initially we are looking to fund the first 3 months. If it works, hurrah, but then we will have to fund on a monthly basis, and the real hard work begins.
I am good at helping others but not so much at accepting it myself so reaching out now is tough. Any little donation towards me receiving this drug to give me some time back is so massively appreciated. Hopefully if there is any success, the trial will count towards research for others in a similar condition.
Thank you for any support you are able to give.
Organizer
Anna Griffin
Organizer
England