When my dad passed away at the age of 55 in May 2012 from non-Hodgkin’s lymphoma I was 15 and grieving and looking for a way of helping Dad’s memory to live on. He stood for a lot and had passed these values on to me, and I was looking for a way of representing this. After he died there was a lot of reminiscing about him. I was reminded of the book that my dad used to read to me when I was a child: Big Bear, Little Bear by David Bedford. He used to end every night by reading this book and telling me that I was his little bear, he was my big bear and he was there to look after me. I knew I wanted to start raising awareness of lymphoma as I had come across a significant number of people who had not heard of it. By December I had decided that I wanted to make my awareness raising efforts official and on 12th December 2012, Big Bear Foundation was created, named after my own big bear. Unfortunately when I was 12 I also lost one of my closest friends to the second type of lymphoma. He had been diagnosed with Hodgkin’s lymphoma at the age of 11 and died 18th August 2008, 2 weeks before his 18th birthday. It was important for me to carry on his message too within my work.
Lymphoma was discovered in 1832 by Dr Thomas Hodgkin and is cancer of the lymph nodes and the associated areas. It is the fifth most common cancer in the UK with someone being diagnosed every 40 minutes. There is a lot of research going on at this University led by Dr Debra Howell and funded by Cancer Research UK. She is looking at ways of making it quicker and easier to diagnose at the GP, as the main symptoms are common in many other benign infections. The symptoms include a painless lump or swelling often in the armpits, neck or groin, swollen glands for a long period of time can also be a sign. Other symptoms include excessive sweating, especially at night, fevers, unexplained weight loss, unusual tiredness, persistent itching, coughing or breathlessness, or abdominal pain or diarrhoea.
There are two main types with non-Hodgkin’s lymphoma covering all cancers of the lymph nodes with a variation from the one originally found by Dr Hodgkin. Non-Hodgkin’s lymphoma is thought to be the hardest to treat as the cells can divide very quickly, which makes it hard to detect early. In the UK alone over 12,000 people are diagnosed each year (as of 2013), most common in men over 55. There are six sub-types of this kind: Burkitt lymphoma; chronic-lymphocytic leukaemia; diffuse large B-cell lymphoma; follicular lymphoma; hairy cell leukaemia and mantle cell lymphoma. Hodgkin’s lymphoma is most common between the ages of 15 and 30 or over 60, and over 1,800 are diagnosed each year. Most people who are given this diagnosis will be completely cured. There are four sub-types of Hodgkin’s lymphoma: nodular sclerosis; mixed cellularity; lymphocyte-rich and lymphocyte-depleted. The other types of lymphoma include skin lymphoma and CNS lymphoma. The PITS campaign launched in 2008 is a student awareness campaign to raise awareness among the most affected group, aged 15-30. This is because lymphatic cancer is the most common cancer in the under 30s.
I was 15 and grieving and looking for a way of helping dad’s memory live on
Big Bear Foundation works mostly to raise awareness for this particular type of cancer. Regardless of how common it is, many people do not hear about it until they are directly affected and often do not know what to look out for with the symptoms. Although I do look to raise money for the main charity we work towards (The Lymphoma Association), my ultimate goal is to spread the message about lymphoma in order to help save lives. The Lymphoma Association works for the people rather than towards research. They are there as a support network for people and help them to help themselves by sending out information packs and working a ‘buddy system’. This works by pairing someone who has just been diagnosed with someone who has been suffering for a while so they can get information from someone already dealing with it. They also give support to families of sufferers.
I would love to get more coverage across many media platforms so as to spread the word to as many people as possible. I want to be seen as somewhere people can go to if they are being affected by it and I want to bring this back to being about the people. A lot of people when they are diagnosed with any cancer just become a statistic, read out on the news or to other patients. I want to try and take away statistics and remind people that those numbers relate to real people battling it every day. Already through my work I have saved the life of one of my friends who was diagnosed early because of the knowledge he gained through the Big Bear campaign, and I want to do that for as many people as I can.
Within the first year of running Big Bear we had raised nearly £1000. We are nearly at our target of £2000. I set up a tribute fund in memory of my father and in this alone we have £1,746.33 raised for the Lymphoma Association with there being more donations coming in at all times. In order to help raise money and awareness, we sell purple flower pin badges bought from the Lymphoma Association, and we also sell purple wristbands with the name ‘Big Bear Foundation’ printed on to them. I also run a Big Bear Foundation Facebook page which has over 300 likes. In this coming year we intend to increase our fundraising efforts with even more events to come.
One event that was particularly successful was the ‘Great British Tea’, which is a Lymphoma Association event, where there were cakes, tea and coffee with music and games. The money was mostly raised through the ticket sales and donations made on the day. It really showed me what an impact can be made as we raised over £300 in under an hour. Another successful event was ‘Tea for Teachers’, hosted at my secondary school, where students waited on teachers and served them lunch. This raised nearly £200. Recently one of the other admins of the Facebook page raised over £100 in a week auctioning off his hair to people at his university. Other events include a 12 hour a day sponsored silence for 7 days. I would encourage other charities to hold events that have an appeal to people, rather than just relying on ask-get donations. People are most likely to part with their money if they are gaining an experience or product from it.
I want to try and take away statistics and remind people that those numbers relate to real people
It is hard working as a student sometimes, especially when there is an event or fundraising effort going on. There is a lot of behind the scenes work and admin to get done. It can also take a lot of time to raise the profile of anything going on. However, as much as I would love to only run Big Bear, I try to not have anything running while I have exams. For example, during my final year at college I did not do a lot for Big Bear as I had A Levels to concentrate on.
I think it is very important to have an interest in charity work, not only does it help those who really need it but I find it broadens your mind and can help put your life into context. The sense of achievement and the good feeling you get after raising money is immense as you know you are doing everything you can to help those who have it tough. As a student especially you are at a point where you have the time to put towards volunteer work before full time jobs and families start taking up your time, so why not? It can be very fun, and also looks very good on your CV!
I would love to take our fundraising around as many universities as possible to keep spreading the word, and keep supporting the efforts of the Lymphoma Association. I would love to get a job within Association itself. I just want to keep doing as many events as I can within the University to raise as much awareness as possible. M