Whilst I wait for Tuesday to arrive, I thought I should use today’s entry to remind or tell anyone who has come across this site in a search for answers or support relating to their own (or someone they know’s) diagnosis of phyllodes tumours. As all of you will know who have read this diary or been with me through this journey, this is why I wrote this site – my own frustration at not being able to find information and more importantly feeling alone in my diagnosis. I have learnt that there are others diagnosed with with phyllodes tumours and like me, they’re survivors. There remains little medical information on our unique and special type of rare cancer but that it’s not an impossible search – there IS information out there and there are people (very special people) who you can ask. Often the questions I wanted to ask or needed to know the answers for were ones that surrounded my anxiety more than a medical response or just simply needed someone who knew to hold my hand on that part of the journey and tell me ‘it’ll be OK’. I am incredibly lucky and thankful for the band of phyllodes sisters who have supported me, answered questions or whoop whooped sufficiently to make me believe I can beat it – with a giggle and laugh too. We also have all, through our own journey, found resources, papers, websites, doctors, oncologists or each other to answer questions. Please don’t struggle on your own. Reach out and we’ll catch you.
My first breakthough was registering with Rare Cancer Support Alliance and introducing myself on the Phyllodes forum and quickly receiving responses. I also read though different discussion threads and then researched links to other papers or where another hospital is mentioned looking through their website for information. From the support alliance site, I found Trish’s blog and contacted her. She then invited me to ‘friend’ her within Facebook. I then discovered that Facebook (which most of consider a bit of fun or somewhere to a timewaster) can also be a powerful tool and link. There are some groups which I’ve joined “Phyllodes Support Group” and “Phyllodes Tumors, CystoSarcoma Phyllodes, whatever the hell it’s called” and “Rare Cancer & Tumors” – all of these groups are supported by a number of Phyllodes survivors who in turn are able to share support and information with each other and regularly chip in on my wall or status to give me a nudge of support or laugh at find humour in our shared experiences.
What I really discovered was simply that I wasn’t alone. Being diagnosed with phyllodes tumour is rare but not unique. There is no hard and fast rule about phyllodes tumours nor how to treat it because there are no reliable studies or research on it – mainly because the numbers of us are so small but by talking to others we can help make the right decisions for us, when the time comes, and importantly without a knee-jerk reaction to theunknown. The questions I wanted answering had one by one (mostly) been asked before and they, my fellow survivors, could help me answer it or help me find my answer. I shall not deny that I wish there was a medical casebook to which we could refer with our ‘what if’ and ‘what next’ questions and simply turn to the right page for the answer.. but there isn’t… or at least there isn’t yet! Perhaps together we can provide some more statistics, some more results, some more facts and THEN maybe there will be more research and studies performed so that what we have won’t be so rare… In the meantime remember no matter what you’re not alone, you just have to ask. ♥♥♥
I had lunch with my big brother and his family. My youngest brother is visiting from Glasgow and my Dad and stepmother were also there. A really lovely meal with family chatting about life, Mum’s death and my illness but mainly just being together. After lunch I (as well as my neice) had to have a nap and then headed home after being beaten at backgammon! My little brother and Iola (one of my neices) came back with me, which was a relief as my bro was able to help unpack all my bags and ready my house for my return – I’ve not been home for 10 days or so!