I am still saddened when new people contact me via this site or we see ‘help me’ requests pop up on forums, twitter or other social mediums from people who have been told they have or may have a phyllodes tumour. Like me they are now on their journey of discovery to find out information and in reading their posts/emails I can hear the anxiety and frustration at not being able to find information. I know its not only a rare cancer but a rarer cancer (ie doesn’t even fall in the rare status) but the fact is we’re finding many more of us via these mediums. Many more people are finding us. We have over 150 people within our facebook groups – might not sound like a lot of people but we have to remember that these are the ones who have sought us out via the internet or social networks and won’t include those people who simply have their local resources of doctors, charities and libraries – of which I’m quite sure there are many many more. It also won’t include those who are younger or older and don’t DO the internet or perhaps aren’t as comfortable with using it for such personal issues.
We are however a fantastic group of individuals. Strong, supportive, empowered and informed. It amazes me at how from all corners of the world we can come together on Facebook and discuss concerns, hold one another’s hand, ‘virtually’ attend appointments or receive results and importantly ‘virtually’ hug one another or provide a ‘virtual’ shoulder to cry upon.
In recent weeks we have gained new members from quite literally opposing sides of the world. But we have also had not such great news of recurrences and metastases believed from the original Phyllodes tumours. Together we rally round.
My wish today is for my friends to keep strong and to believe that they can do this, to know that we’re with them every step of the way BUT also my wish is that there are clinical trials undertaken, that there is research done and more importantly that they work out why there is this rare cancer and a treatment plan to end recurrences or metastases… is that too much to wish for?