Miss you and wish you were still here to share my life, dreams and goals.

I might not be running a marathon but this song goes a little way to explain why and for whom I’m doing this… Melissa Etheridge’s “I run for life”

Today seemed like yet another milestone moment in my journey. This time however for what I consider to be, the right reasons. Scary and frightening but at the same time, exciting and exhilarating.

I made a decision that I AM incredibly thankful for my lot, I’m able to do so much and have the tools and drive to make things happen. I may not have what many some others may consider as ‘making it’, of being where we should be by the time you reach 42, I might not be married with children, have a large house with little mortgage to pay, or holiday in glamorous locations twice a year but what I do have is my health and the ability to follow my heart with decisions that may appear risky but hold so much potential reward. So I’m stepping off the corporate ladder and creating a path that allows me to help others. I’ve resigned from my 9-5 job (well actually 5.30!) and am moving back to Londontown.

Why? That second when I was asked to gather round for a photo of international attendees at the Conference in Atlanta was a defining moment. Out of the approximate 960 conference attendees only 8 were from outside the US and I was the only one from the UK. I’ve said it before and it’s stuck with me so boldly that I was so blessed to have been able to go to the Conference, to meet people in a similar situation; share stories and experiences; hug others with Phyllodes (something I never believed possible when they told me it was so rare that less than 1% of breast cancer is diagnosed as Phyllodes and doesn’t affect ‘young’ women); network with others whom I’m still in touch with; gain a support network and be part of the supporters as well as the supported; find out how I can manage stress through meditation; eat better to ensure that my body is best able to fight cancer; attend seminars about medical trials and updates in the field for answers; understand that I’m not alone when I cry at a moment’s notice and for no particular reason; realise that I need to find my ‘new normal’ as who I was before cancer is no longer; …and a million other reasons why.

It’s these reasons and more why I feel passionately that the opportunity of attending a conference like this should be offered to UK and European people affected by breast cancer. As a nation we’re not great at talking about our feelings, mentioning the ‘C’ word or asking for help, discussing side effects or how you put on makeup when your head hair and eyelashes have fallen out… But when you spend time on cancer forums or waiting rooms in oncology units, you quickly know that there’s a need for a conference and an open place to discuss Cancer. We are, as a nation, getting better at opening up about sensitive issues and I hope this conference will go a little way toward helping people affected by breast cancer finding answers, support and a gentle hug.

So that’s it. I’ve resigned from my day job. I’m going to facilitate a Conference to be hosted in London for the UK and Europe in March 2011 and ensure that many charities work together to make this happen annually and for up to 1000 attendees at a time. A big ask but one that I feel is necessary and one that I’m fortunate enough to be able to dedicate time to.

And yes, I will be looking to you all for help…

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

I had my rescheduled appointment with the radiographer today. How brilliant, I was seen at the appointed time and taken straight through for my appointment – although for once I was hoping for five minutes in the waiting room… I was desperate for a pee!! everytime I headed off to the toilet, I heard my name being called and would rush back to the nurses! (there’s no pleasing some people eh?). And yes I did have to change into a very sexy gown and then was given an even more sexy gown to pretend we had a dressing-gown over the top. We look like a right fashionable array of chicks in the waiting room and even though we’re all so nervous, at least we laugh at our attire!

I was quickly called into the cubicle and lie down to wait for the radiologist. Then I’m smeared with jelly (oooo errrr) and the scans began. I have to confess to being more than a little anxious as I lay there and my heart, I’m quite sure, was audible by the radiographer. Even though I am meant to be getting my results in 2 weeks time from my consultant, the radiographer told me what she would say to my consultant – that she can’t see anything of concern. How cool is that? Champers anyone?

She did mention that there is was fluid over the original excision area but said this would eventually absorb into the tissue so there’s no need for any drains or any more surgery.

So, good news and time to plan a future again… Consultant’s appointment in two weeks to get the results 😉 and then schedule in the next scan in 12 weeks time.

Had a lovely morning in the dentist chair and headed out to the hospital for my scans and appointment with my surgeon. After the inevitable waiting, staring at the magazines that I’d already read at my previous appointments, I was taken through to the left consulting room (he has two consulting rooms on the go during the consulting days and a middle room in which paperwork and scans are assessed and completed between appointments).

I could hear some muffled voices and hushed tones from the adjoining room, amongst them my consultant’s voice. 20 minutes later he pops his head into my consulting room and says ‘we can’t find your scans’! So I said I hadn’t had any yet… that’d explain it! Turns out I should have attended another appointment with the radiology team however I didn’t receive an appointment letter. But then again I didn’t receive an appointment letter to see my consultant but knew that it was coming up so had called to see if there were any appointments booked for me and was only told about this one!

However this did give me the opportunity to speak to my consultant and discuss the pain niggles and lump that I had felt. He did a manual check and said they felt OK (errrr well of course they feel OK, they’re MY boobs!) however he has suggested that I take primrose oil daily and also ordered a bi-lateral ultrasound scan, so they will check/scan both boobs.
I’ve learnt my lesson, I’ll be calling the hospital in a couple of days to check what date/time my new radiology appointment is. Gives me enough time to collate some ‘newer’ magazines to take into the waiting room – I guess it’s one of the joys of cancer is that you get to visit your medical team often, therefore it’s important that the waiting room has lots of new reading material so you can absorb your mind in media rather than worry about the appointments and tests you’re waiting for.

Serves me right for panicking about the scan though – ha blinking ha, I’ll just have to do it all again…

OK, so for all the bravado and I’m OK positive noises… I’m a little lot nervous about my first 12 weekly check-up.  Sounds ridiculous to be so nervous and I wonder if some of my nerves are simply because of recent events.  I sort of hope that’s all it is but I also know that there’s still the pain and a new lump in the other breat – but hey that could be hormonal or something, right?  Or maybe I AM really a lumpy bumpy person and I didn’t really notice before this all began.  You see, I can’t help but wonder if I had been one of those very good girlies that check their breasts regularly and therefore know if something is abnormal early on, I might just know now if this is ‘odd’.

One thing I do know is tell your friends, family and whoever will listen to do so to check breasts regularly… How do I check?

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell. ~Lance Armstrong