So, what do we know? What do we know about this ridiculously rare cancer? Well we know that the only treatment that I could have had was surgery due to the speed and spread!
We do now know that my DNA need’s to be sequenced to target chemo if possible.
Here is a bit of an explanation…
If you and your health care providers decide to make tumor DNA sequencing part of your care, they will remove a sample of your tumor and, in some cases, a sample of your healthy cells. They may obtain these samples during surgery, if it is part of your treatment plan. In other cases, you may need to have a biopsy.
Your samples will be sent to a specialized lab, where researchers will isolate your DNA and then use a machine called a DNA sequencer to “read” it. They will then analyze the sequence of your DNA to determine if there are any genetic alterations that make your tumor susceptible to certain treatments.
They may also examine the DNA sequence of your healthy cells to determine if you have any inherited, or germline, mutations that increase your risk of cancer and can also influence treatment decisions.
Based on your tumor’s unique genetic alterations, the specialized lab may generate a report that lists treatments your tumor is likely to respond to. Your health care team will discuss the results with you to make a personalized treatment decision.
How Am I Going To Stay Alive…
I am trying my best to get research done into this type of cancer, we need a person now on this fulltime who can look at options on mass, this all costs a fortune as it a lot of the information needed and testing is not available in the UK.
This means going to places abroad to have tests done. Time for me is not going to be vast, I probably won’t have much time to get this all done before my cancer grips me again fully!
I am resiliant but can’t be when I get infections, sick and I have mass fatigue.
My Cancer Is Different To Most…
My cancer is an evil packet of cells, they all work on different sub levels and all are very aggressive. They attack me very fast, they also grow and spread very rapidly. Within one month I have 19 or so tumours removed that did not show on a scan the month before!
It is not easily treated and does not respond to most treatment, so surgery is the only option at this time as everything else may make me to weak or increase spread rapidly.
Why Do I Want To Be Happy During All This…
Why not be happy? Why not be happy about every day that I am alive? Back in the day people didn’t ever live this long, being alive is all about living life to the fullest.
Even though I am in hospital, alone and bored stiff, I can still do things I enjoy, crack jokes and smile with others.
Nothing would bring me greater pleasure right now than to sit around a camp fire and exchange stories, sing and be smiley. My life was never about technology when I was younger, it was always about people, interation, friends and being social!
I can’t wait to be myself again a bit more and share that with the world. I really can’t.
The community website is being built but due to my extended stay in hospital I have not been able to project manage this properly as I would have liked. We are aiming to have a beta version released and ready this month. This site will then evolve to be a wealth of knowledge, stories from others and be a beautiful hub to help people, no matter what they are going through.