Look closely at my photo...can you spot it? I am holding a fake right arm that my gorgeous, talented girlfriend Becky made me for my Halloween costume last October. We were dressed as Jack the Pumpkin King (Becky) and Sally the humanoid ragdoll (me) from the film, A Nightmare Before Christmas. Even though I no longer have a right arm, that didn't stop Becky from coming up with the perfect Halloween costume as we celebrated just the two of us in our first home together.
My name is Scott and I am 25 years old. In April 2018, during the second year of my PhD studies at St. Andrews University, I was diagnosed with Osteosarcoma (Bone Cancer) of the right proximal humerus (shoulder). In August 2018 I had my right arm and shoulder amputated in Birmingham Royal Orthopedic Hospital as the cancer was not suppressed by the only known curative chemotherapy drugs that are available for Osteosarcoma. Here is a photo of me at the Musgrave Disability Centre in November after receiving a shoulder prosthetic (I chose a shoulder as an arm would be too heavy for longboarding).
So now a year after my diagnosis, the cancer has metastasized (spread) to my lungs and my oncologist has advised that any further treatment would be life-extending only. I have exhausted all possible curative treatments available to me on the NHS.
I have thoroughly researched potential curative options outside of the NHS and I will be pursuing private drugs and treatments not yet available on the NHS, but are licensed and have been shown effective in other countries. These treatment packages cost up to £55,000 at a time with an indefinite monthly follow up care of up to £4000, as well as travel and accommodation costs incurred during treatment visits.
Time is not on my side and I will be hoping to raise enough funds to begin the first round of treatment by the end of April.
As well as raising funds for my further treatment, I hope to raise awareness for this rare disease. Osteosarcoma, or osteogenic sarcoma, is a rare type of bone cancer. Osteosarcoma is considered an orphan disease whose rarity means there is a lack of a market large enough to gain support and resources for discovering treatments for it. Osteosarcoma usually develops in growing bones. It‘s most common in teenagers and young adults, especially in young males. Any bone in the body can be affected, but the most common sites are the arms or legs, particularly around the knee joint.
You can find more information on Osteosarcoma on the Macmillan website: https://www.macmillan.org.uk/information-and-support/bone-cancer/understanding-cancer/types-of-bone-cancer/osteosarcoma.html#241797
I understand this is a huge amount of money to ask from people. But raising these funds mean I have a chance to continue living my life with my wonderful girlfriend, family and friends. I can't thank you enough for your support.
- Heather judge
- Bernarda Mc Elholm
- Greg Watson
- Ronnie Murphy