I’m not sure where to start or with what or where today’s entry is going to go.. bear with me. Life’s funny (not necessarily in a haha sort of funny either) but it’s often that with every high there’s an equal low. In balance of the great news on Friday, there’s that little voice in my head reminding me that I still have to be vigilant and also why am I so tired the whole time.
My little voice keeps reminding me that a year ago I was spending this bank holiday weekend with friends talking about party planning to celebrate Mum’s 70th birthday. A year ago, I didn’t have cancer and Mum was still alive; I’d never stayed overnight in hospital and I called Mum when I needed to talk something through; I’d never heard of Phyllodes and I believed I’d be annoying people until I was 78 years of age; Mum, although frail then, had an enormous amount of fight in her and was still able to drive myself and my brothers to distraction!
You see after the good news of Friday, I guess most people think I should be able to get back to who I was before cancer (Anna BC). I sometimes think I should be able to do that too… and just for a few moments I seem to be able to do it too. Then I’m overcome by fear. A fear that it hasn’t really gone away, it’s just hiding. A fear that I haven’t finished my life and want to rush off to complete it, just in case it ends sooner than 78. A fear that in my haste I’ll rush down the wrong path and don’t have time to reconfigure my internal satnav. A fear that I’m afraid. A fear that there is no textbook to follow or rulebook to read. I also feel guilty. Guilty that I’m OK and that others struggle with metastases and of my sisters who have lost their life to this rare cancer. So why me? In my saner moments I know that I have to write that rulebook.. my own rulebook. I have to follow whatever path I see before me and any ‘mistakes’ are just learning mechanisms for my next steps forward. I know that Mum had had enough of being ill. I know that she’s now without pain or frustrated that her mind still worked when her body didn’t. I know that she’s still with me guiding me, if only I could hear her voice.
I know that I have to use these experiences to help others and to get information about Phyllodes out there into the public domain. It may be rare but how come we get requests to join our Facebook Phyllodes group every week. How come we were told that we’re too young to get this and yet we have group members who are under 25 years of age? How come there are now 80 of us in the group? How come there’s not more awareness amongst the medical profession? How come I get emails from people who have googled Phyllodes and are seeking information for themselves, their friends and family?
I guess I still feel a bit broken and I’m not sure where or how to get it fixed.
But I can help others… first step friends, family – be breast aware… remember how this all started for me on the morning of Mum’s funeral
“I felt a little pain in my right breast and on rubbing the pain away discover a lump. Now I have to confess I don’t (as suggested by all the health organisations) check my breasts regularly so am not sure when the lump arrived or if it’s got larger quickly etc etc. I texted a friend in a panic (it was 6.07am) “Onmygod, stupid question to ask a boy but do glands play up when upset? cos I’ve found a lump in my boob…”. He replied with “EVERYTHING plays up at times like this, Stress and trauma cause all sorts of things. Forget about it for today and tomorrow and see how it is after the weekend. 95% of boob lumps aren’t anything, but if it’s still there next week share it with your doctor”.”
Please be breast aware – work out what’s your normal, regularly – How to check