My name is Beth Semikin, I am 22 and I was just this year diagnosed with an aggressive form of sarcoma, called Epitheloid sarcoma. This is a rare form of cancer. To find out more about sarcoma please have a look at my blog at www.tumourhasit.co.uk/s-a-r-c-o-m-a/
My route to diagnosis was fraught with difficulties and involved my tumour being missed on an MRI in February, an unnecessary epidural and an incorrect 3 hour surgery to remove my tumour in June, which served only to increase my chances of my sarcoma spreading to other parts of my body. Throughout this struggle for diagnosis my leg pain, originally thought to be sciatica, rapidly worsened and my condition deteriorated such that in June I was barely able to walk, was constantly on a high amount of painkillers and opioids and was frequently having panic attacks due to a combination of these drugs, stress and pain. I had no life and dreaded waking up each morning to yet another day of being in agony.
In June my tumour was found but assumed to be benign, which led to an incorrect surgical method being used to remove it. I surprisingly felt relief upon being told I had a benign tumour since I knew that within a few months, if my condition continued to deteriorate, I would be in a wheelchair and unable to lead an independent lifestyle; this diagnosis provided a cause for my pain, one which could be rectified.
However, it did not turn out to be this simple. My biopsies showed it was sarcoma, and therefore malignant. I was sent to Jacksonville, Florida for proton therapy, an alternative to conventional radiotherapy, in the hope that my fertility and bowel and bladder function would not be compromised. On my third day there, my symptoms returned and a planning MRI showed my tumour had regrown and was double the size of before; it had not been properly removed by my last surgeon. This was the scariest time for me throughout this journey; I was faced with the possibility that my tumour may not be operable, leaving me with a 25% chance of survival. I was brought back to the UK immediately and three weeks later had extensive spinal surgery at Stanmore Hospital. My surgery was eleven hours long and I spent eight nights in intensive care afterwards. This surgery was the hardest thing I have ever gone through and I am still trying to cope mentally and physically with the trauma of such major surgery and its repercussions. However! The good thing is that thanks to the amazing team at Stanmore it will appear that I am sarcoma free!
I am now back in Jacksonville just about to begin proton therapy and hallelujah we have managed to stay out here longer than last time! I will be here until the start of February and then I will return, have a month off and then start a course of chemotherapy.
This journey has been incredibly challenging for me and, although I have come out the other side fighting, it seems to have gone on forever and I feel tired. However compared to many others with sarcoma, my struggle has been relatively short lived. I am exceptionally lucky to have the prognosis I do but many others aren't so lucky. Due to lack of awareness of sarcoma on both medical professionals' and the general public's parts, sarcoma is often diagnosed late which leads to it spreading and a poorer prognosis. Early detection is key and essential in giving people a chance to recover from sarcoma, and this starts with greater awareness and better education of sarcoma.
Additionally, better funding is needed to aid research into sarcoma and its effective treatments; currently many treatments effective at killing ordinary cancer cells do not affect sarcomas in the same way, including many forms of chemotherapy.
So to raise much needed funds for an exceptionally worthy cause, please donate and/or (preferably and!) join my amazing friends at Imperial College London on December 15th at 7pm in the Union Hall for a night of live music with cakes, raffle and more! See the event page for more info: https://www.facebook.com/events/790171891108418/
Thank you so much for your support!
To find out more about me and my journey please have a read of my blog at www.tumourhasit.co.uk . Please like me on Facebook at www.facebook.com/tumourhasit and follow me at www.twitter.com/tumourhasit . I am entering the UK blog awards and one round is done on Twitter so any follows would be greatly appreciated! Thank you!!