Hahaha don’t you just love hospital instructions!… I have more scans and one of my instructions is not to wear a corset!!

I hadn’t been thinking about wearing one but now the devil in me is sorely tempted!!!

OK so I didn’t but I did think about it! Here we go again, nervous once again just in case they find anything but also feeling like an old professional patient. 6-monthly checkup scans – this time only an ultrasound.

Happy Birthday Granny. It’s funny how I know it was my Grandmother’s birth date and that I now remember it every year. I didn’t when you were alive but now that it’s interwoven with my cancerversaries it’s become a significant day to me. It was the 16th October 2009 that I was told the pathology had identified a rare cancer and a day when the bottom fell out of my world…. but also a day where I felt that you, Granny, had been looking out for me and holding my hand. Thank you.

I’ve not updated a great deal on the website this year, partly as there has been little to write about anything ‘new’ about Phyllodes (for those of you who find this site looking for information); partly because there’s not been too much about my own health that has been newsworthy or that I’m willing to share; and mostly because I don’t know what to say.

The Conference has been put on hold following delays by the Charity Commission in our registration. These delays in turn meant that the financial year end for many corporate sponsors was missed and tens of thousands of funding lost as a result. It had been hoped to postpone the event – the structure, speakers and workshops being arranged and set up – however the venue, despite being given 7 months notice, would like an astronomic cancellation costs. Long story short but this sent the whole project into a spin and has, for the timebeing, been shelved. My decision was not taken lightly and there were a number of factors in this decision. The most important was that I was worried that we would raise more funds for the project which may end up in a corporate venue bank account rather than put toward the project itself! I was also aware that the 24/7 work on the project had been making me quite unwell and was undergoing a number of tests for a large part of 2011 to establish what was wrong with me – to date still inconclusive. I was also exhausted and feeling utterly battered and bruised by the experience. However the upsides were that I was being approached regularly to sit on a board or committee at local and national levels within cancerland and from where I may well be able to influence the very changes that the Conference would have been able to do, ie survivorship and patient empowerment. I also received some great feedback from a few UK cancer support charities to say that on the back of meetings with me, they had altered their programs for cancer patients and carers.

I am and have been devastated that the event is not going to happen – it was my baby; I know how much of a difference it would have made to attendees and others; it was addressing head-on issues that cancer survivors ask about all the time but we Brits aren’t great at answering; and also I’ve invested an enormous amount of my own money into it. However I do know that I made the right decision, for now.

I have, very recently, been approached by two parties, one a volunteer organisation and the other an NHS group. Both of them would like to utilise some or all of my conference structure, speakers and workshops in their own events and clinics. I’m looking forward to assisting them with their projects.

For me… I know that I need to spend some time on me. Some time looking at what I best need to do and how I do it. I know from my recent episode in the GP surgery and others that I’ve not told you about that I need to deal with some demons of my own. I’ve learnt a great deal in this process though. Not least about friends and family. I’ve also learnt that I need positive people in my life.

Two years ago today I received the results of my biopsy. They told me that I had a benign fibroadenoma and that this could easily be removed, nothing to worry about and bish bash bosh, I’d be back to my old self in no time. So much so my chirpy little entry on this site for 9 September 2009 reminded me that I had discussed renaming the procedure with my consultant to mallowectomy as it didn’t sound as harsh as lumpectomy!

Worst still the line:
“At least however we don’t have cancer in our family history and I’m just lumpy bumpy.”
I can’t tell you how often I replay that sentence in my head and how sad it makes me that I was just soooo damn wrong.

That was how I felt at the time. That was how my day was going. And that was (at that moment in time) how it was going to be, just a little blip. I think you can read the relief in my entry of knowing that I didn’t have cancer. But wow what a rollercoaster there was ahead of me.

Two years on, I’m ‘cancer-free’. That is to say the scans have told me that they got it all and there are no recurrences in the breast tissue. I can’t tell you any more than that. There is no real end date either. I know that may sound odd or strange but where there is clinical evidence or a precedent to follow then many cancers can get the 5 year ‘all clear’ or the at the end of this drug or that drug you will have beaten it. In my head however there isn’t an end date/time because nobody knows. If I sound like I’m dwelling in it, I’m not. Not at all. I’m cancer-free. But I find it terrifically hard when there’s a route or a pathway or a reference for other cancers and illnesses that determines an end or a route with markers on it. For something so rare, where there is no definitive ‘guide’, there are no answers. I may not be a scientist or mathematician but I like things to be solvable and there to be a reason and result. My favourite subjects at school (and subjects that I did well) were sciences, maths and even loved algebra! I think that’s where I struggle most… lack of reason and answers. Perhaps as more of us are diagnosed there will be more pressure for clinical trials, research, information and resources to be undertaken. As well as more data and reference points for ‘guides’ to be created. Perhaps my digging away at various different resources, speaking at cancer-related events, involvement in a number of different cancer networks, sarcoma groups, conferences and boards that maybe the word ‘Phyllodes’ will become a name that people start to think about…. perhaps. But I’d rather noone else had to join this exclusive group and be diagnosed!