Jacquelyn’s Story

Ewing’s sarcoma at the clavicle
Age at Diagnosis: 40
Date of Diagnosis: 2005
Location: Australia

Diagnosis: I first attended a doctor for a pain in the shoulder which I thought was just the result of over exertion. The doctor ordered an x-ray and a tumor was found. A biopsy was performed and for the type of tumor it was I was given an injection of cortisone to settle it down. A week later I returned to the doctor with more pain, and a loss of sensation in my right arm and fingers. This time a scan was performed and, believe it or not, behind the first tumor was a second one which was biopsied and found to be Ewing’s Sarcoma.

Treatment: It was felt for some unknown reason not to do surgery (which I found out was the first of many errors by my doctor’s as I have since been told by Doctor’s in the US that monkey’s only really need a clavicle, humans can survive very well without them) just straight in with chemo and radiation neither of which fully managed to control the progression of the disease. I have found since speaking with several Specialists overseas by phone and email, with them having access to my medical records, that basically my entire treatment was wrong from go to woe.

So for me now it is a flight to New York on the 2nd August for 9 days to confer with a board of Doctor’s at Sloan Kettering.

Hopefully, this will give me both some answers and a plan of action, both of which have been abundently and distressingly missing since the very beginning of this terrible journey.

So onward and upward.

Life now: Life for me has slowed down somewhat just due to physical limitations. But I have just started a new business importing designer children’s clothing and this has given me a focus, especially at night when things get a bit more uncomfortable.

My family is coping well because to be honest I am coping well, I never concentrate on what I cannot do just what I can, and just because I cannot do it today does not mean that I may not be able to do it tomorrow.

Thoughts and hints for new patients: All of us I know go through the different stages of grieving once we are diagnosed. I am not saying that my way is the best way or the only way, but I have never said “why me?” because why not me? I am not so special that I should be overlooked by this horrible disease. I have always lived my life with the idea that all of us a destined to take a certain number of steps in this life, not one more and not one less, and what will be will be, and having cancer has not changed my perspective one iota.

My only advice to the newly diagnosed is ask questions, lots of them, and if you are not happy with the answer ask someone else. Trust in yourself that you know what your body is telling you. I wished I had.

All the very best to all those suffering and continuing to fight, and to those who have lost the battle, hopefully saying “no regrets”, bless you.