So, during the last couple of years there have been a few charities who have supported me. Before being diagnosed I either had not heard of or did not know the extent to which they help people. I thought I should do a quick list of these Charities to flag them up to people who were like me before diagnosis, a little oblivious to them.
Teenage Cancer Trust – https://www.teenagecancertrust.org/
As soon as I was diagnosed I had support from TCT and a TCT Clinical Specialist Nurse. She was there for support in my diagnosis of cancer. She is able to explain things in a way I can understand as medical jargon can get quite overwhelming. She answers questions about medication and effects of treatment etc. After my operation she came to my house to support me mentaly, and since has become a good friend and someone I trust more than anyone. She also offers advice on benefits, money issues and prescriptions. She attends appointments with me to support and lend an ear as my memory isn’t very good and she can then relay later. She is there for me to give advice on family and friends; in how to tell them about my cancer or dealing with their reactions to my cancer, as some people react in badly and in a way that is hurtful to me.
At the YOU (Young Oncology Unit) at Christies there are Youth Support Coordinators. These guys are so much fun and keep your spirits high when needed whether you are an inpatient or not. They provide support on your diagnosis and they help you live a ‘normal’ fullfilled life during this chaotic time. They also make you socialise and encourage you to leave your room when you are in hospital. When I was on treatment I was in for a week at a time on treatment and then back with infetions in between. I was constantly in hospital. Whenever I was on the YOU they encourged me to keep busy or try something new. The YSCs are there to play games with you, they run a quiz, there was weekly baking and on a Wednesday we would have Dominoes Pizza!! They also organise trips ie theatre trips to london, frequent meals, spa trips, the Music Trip to Albert Hall to meet The Who, organise special visits from celebrities etc etc. They do so much and I will be eternally greatful for what they have done for me!
” ….bringing normality to a very abnormal and difficult life experience.”
Lorraine Wright, Youth Support Coordinator
The Christie Charity – http://www.christie.nhs.uk/the-christie-charity/
The Christie as well as being the best hospital in the country for Cancer Care, are also a charity which have helped me in ways other than treating me for Cancer. The YOU Unit at The Christie has a Music Room and ‘Hub’ space . This is a place for Family and Friends to hang out with you in the hospital. Also a place to play games, watch tv, play pool, they have lots of games like the wii, playstation etc, lots of dvds, you can play music on the Jukebox, get a drink and snacks. There is a weekly Baking group where you can make lots of things like cakes, biscuits, pizzas, gingerbread houses etc etc.
They also provide two Music Therapists who come in twice a week. They helped me come out of my shell, at first didnt want to leave my room, or enter the Hub. I started singing with the YOU Band, I was encouraged to do solos and my confidence and my comfort in the surroundings got easier and more relaxed. They are able to teach you different instruments such as the ukelele, piano, drums, guitar, saxaphone, you name it they can do it. I am infact attempting to complete my ABRSM Grade 3 exam in Piano witht the help from Steph, one of the therapists. They also provide extra trips and opportunities ie. gigs and concerts to perform in or watch. I use music as my therapy so I have become very close to the Christies Music Therapist, Steph as she offers me advice and encouragment and pushes me to do more!
The Red Cross – http://www.redcross.org.uk/
The red cross provide mobility aids all over the UK. I didnt know about this service until I needed it after my Leg Operation. I am also currently using on of their chairs. They only require a small donation but without this chair I wouldn’t be able to leave the house or do any activities whatsoever.
Look Good Feel Better – https://www.lookgoodfeelbetter.co.uk/
Look Good Feel Better provided a group session where you could talk with other girls going through cancer at various stages. I was recently diagnosed when I attended my session and I hadn’t even thought about chemotherapy effects as it wasnt on the cards. However, I believe that this session helped me deal with the symptoms such as losing my hair and loss of eyebrows and eyelashes. We also were given a look good feel better kit which was tailored to our skin tones and included some amazing make-up and skin care. This was an awesome gift and I enjoyed playing with make-up and experimenting looks. We were guided by two LGFB volunteers who went through skin care routines and make up application.
The Willow Foundation – https://www.willowfoundation.org.uk
The Willow Foundation provide a ‘Special Day’ for cancer patients across the UK. I had a special day officer who I talked to a lot before my special day arrived. He tailormade my Special Day so suited my needs and requirements ie. the wheelchair, making sure we had time before we had to go home and enough time to go to the theatre after Afternoon Tea etc. My Special Day including transport to London, 5* Hotel, Afternoon Tea at The Ritz and then Transport back from London for myself, my sister and my Mum. It was stress free and was an opportunity for us to relax and have a break away from all things ‘Cancer’.
CLIC Sargent – http://www.clicsargent.org.uk/
I was put in contact with Christies CLIC Sargent Support Officer. He was able to give advice on benefits and money, mental support and you could talk about anything and everything. If you have a problem he has an idea of what to do. He attended the CLIC Sargent Music Workshop I went on too! This trip improved confidence in performing tremendously, I was able to talk to other ‘cancer kids’ who are also musically minded. The support from the Support Officer on this trip helped me get around in my chair, helped when I was feeling ill and stressed and he helped me calm down when my anxiety and panic attacks took hold.
Runway on the Runway – (This year it will be Maggies On The Runway) http://www.runwayontherunway.co.uk/the-cinderella-project/ http://www.maggiesontherunway.com/
Just 2 weeks after I had finished chemotherapy I took part in Runway on The Runway, which raised money for teenage cancer trust. We had a dress, hair and make-up done and I even had chance to go into a recording studio and record song & music video with some other people for the advert. The Runway team also provide ‘The Cinderella Project’ which provides a full make-over and dress for girls who are in school and have a important event such as a Prom coming up. This year it will be fundraising for Maggies Centre (A place for Cancer Patients to relax and meet friends – tends to be more for the adults)
SARCOMA ORG. – https://sarcoma.org.uk/
I want to also mention Sarcoma UK, the charity which offers support to Sarcoma patients and I used their website to look at information I may have needed. I didnt want to know too much about all the statistics etc, so I didnt research my cancer much at all, but I know the information is there. There is also a support line where people can ring up and ask any questions or just talk about any concerns or issues they are having. Sarcoma UK also fund research into treatments and knowing more about this rare cancer.
Sarcoma Support Line : 0808 801 0401