Oooh a blank page.. what will 2011 bring?

Welcome and a very happy New Year to you all.  I'm truly hoping that 2011 heralds a new beginning for many and a year where doors just simply open up to new opportunities that are ALWAYS within your grasp.  Take them and enjoy the journey.

[As always... start at the bottom of this page and scroll up!]

30^th October 2011

During my journey I have spoken of my 'Phyllodes Sisters' who have been there for me in so many ways.  The majority of these ladies I met online via the Facebook group 'Phyllodes Support Group' and some I have, as you know, had the pleasure to meet at the Young Survival Coalition (C4YW) Conference in the US.  I have mentioned a few by name but mostly by reference to the wonderful team who mean so much to me. 

Today we hurt.  Today our beautiful Jolene lost her battle with cancer.  Jolene was a shining example of how to live but also an example of how to die.  Diagnosed first at the age of 17 with her first Phyllodes tumour, then with metastases to other parts of her body and new rare and also common cancers too including chrondosarcoma and DCIS since her first diagnosis.  She's had surgeries, chemotherapy and radiotherapy.  After two major surgeries earlier this year to remove tumours from her jaw, the jawbone being replaced with bone from her thigh, first one side and then a recurrence on the other side of her jaw a few weeks later.  She thought she had beaten cancer once more. 

After experiencing headaches she fought to have scans on her brain and they discovered yet another fast growing rare tumour behind her eye.   Jolene made the decision at the age of 25 not to have any further surgeries or treatment.  She decided that her quality of life was more important, even if just for a short time, than to undergo surgery that they couldn't guarantee would work, nor would possibly leave her blind or disabled.  The medics gave her 3 months maximum to live.

Hahaha (and as I type that I can hear Jolene's laughter)... Jolene wasn't going to take that lying down and steeled herself to have the best ever time that she could, in the time left to her.  I saw daily posts of adventures.  Jolene spoke of a closeness that was evolving each day with family and friends and an amazing mother-daughter bond and one with her grandmother too.  She amazed us all at her life and laughter and also her compassion for others whilst she faced this every day.  And we held her hand on the days it seemed too much or when the pain was unbearable.

In the early hours of today she went to sleep.  On her terms and only when she was ready to go.  She was surrounded by her family and friends and left peacefully. 

For her friends and family there is now a huge gaping hole where Jolene once lived in our lives.  I personally cannot believe I won't hear her laugh anymore or read about the mischief she creates on this earth.  However we're all absolutely sure that the angels are partying tonight.. and if they are at first reluctant, Jolene will have them dancing and giggling in no time.

Jolene VonMillanich - 19 November 1985-30 October 2011 - In the Arms of the Angels by Sarah McLaughlin

16^th October 2011

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.

9^th September 2011

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!

7^th September 2011 - GP

My lovely GP called me in to see him today.  I didn't know why but presumed he may have received the results of my latest scans from the hospital and was just checking on me. 

I've said before that my GP is the best in the world and I'm terrifically fortunate to have him as my GP.  Sure enough he just wanted to take my blood pressure, blood test and generally check on me.  We had our usual little chat.  He was also able to take some blood for me to send off for a clinical trial that is being carried out into DCIS (you may remember they found one of those in me too!). 

I was my usual bubbly self.  As the appointment was coming to the end, he asked me 'how I really was'.  To which I gave my usual chirpy answer of OK and the mask was firmly on.  As I left his room, he said he worries about me putting a brave front on and then said "Anna, YOU know what I mean.  And you know where I am."   Barely made it out of the surgery before the tears fell.  Thank God for my favourite place to put myself back together again... I headed to Berkeley Square and probably looked like a loony-tune sitting, staring and thinking!

22^nd August 2011 - 2 years and 2 days on

It didn't go unnoticed, by me, that on Saturday 20th August 2009 was the day that I found the lump that has caused me so much anxiety, sense of loss and belonging together with a feeling of being so alone.  I remember so clearly the moment as I was getting 'ready' for Mum's funeral, changing in and out of outfits and adjusting myself when I felt that lump (which then became lumpS).  I remember that moment of sheer panic and fear, that moment of anger that Mum wasn't alive for me to go to for help... instead in a few hours time we would be at the crematorium turning her earthly body to ash.  I don't know if I'll ever forget that moment or, like other moments in this journey, when the world seems to suddenly turn black.  That moment when I can't see any light to run toward or any chink that makes any sense or demonstrates that there is life and light beyond.

So two years on I did something very different.  I went to a music festival with a friend.  Shellie knows me well but didn't realise the significance and I didn't tell her either.  I guess I needed to prove that I could do something new, exciting,  positive and fun.  Prove it to myself.  With people who wouldn't be worrying about me and what was going on in my head... and I did it.  I really did it.  OK so I drank too much on Friday night.  I danced like a looney-tune and I probably embarrassed myself... but I didn't let the darkness in.  I remembered how to forget.  I sang in a loud (probably out of tune) voice along to the sounds of the 80s on the Friday night stage for camping festival-goers.  And then I collapsed in my tent and slept soundly until the morning.  

OK OK, much like my time in the 80s I woke up with a raging hangover, feeling queasy and unwell.  Perhaps also a little maudeline and quiet but grateful for the company of Shellie and our new tent neighbours with whom we'd launched our company upon on Friday night and had a great night with.  Everyone else was chipper and late morning Shellie and I headed out for a walk along the river.  The music festival (Rewind Festival) is held in Henley, my local town when I grew up.  A place that I used to go with Mum and where many memories were held - good and bad.  Walking along the river and through the town was good, cathartic in a way but one that I could only flash through in my mind whilst we wandered.  I'd still not told Shellie or the others the significance.

I didn't drink on Saturday and danced and sung along (perhaps slightly more in tune) to the hits of the 80s.  Memories flooding back but all safely in my head.

This was my first foray into Festival going.  I loved it... mostly.  No I really loved it... the only part I wasn't keen on was the sanitation issue with portaloos and very few showers (and a 2.5 hr queue for a cold shower!).  Beyond those issues the rest was blinking brilliant.  Danced, sang, laughed, chatted, giggled and generally had a ball.  With Shellie but also with old and new friends... I even hope to go back next year.

I guess what I was trying hard to do, and I think achieved.. 'best foot forward'... 'onward and upward' etc etc

I'm getting there... but there is a niggle in my head.  There was at the festival, as there often is, a friend trying to match make me, concerned that I'm not in a relationship and convinced that I should be.  Looking around for my 'perfect partner' and then quizzing me on my intention.  I don't think I notice men in a 'relationship' way any more.  I notice them as being someone who I'd like to spend more time with.  Or perhaps someone who I have a great deal in common with.  Someone I enjoy being in the company of.  But I've switched off anything else.  Last night as I tried to get to sleep in the cold tent, I spent many hours thinking it through, having been quizzed heavily during the evening.   I don't know if it's because I don't think I'm good enough; I don't want to inflict myself upon someone because what happens if the cancer does come back;  I don't know if it's because I can't put myself in the position of being knocked back and rejected; I don't know why.. but I think right now, I'd much rather enjoy someone's company, have a laugh, enjoy life, do things together without any expectation but mostly have fun.  I don't know... but I do know that I don't know!

16^th August 2011 - Fizz, Fizz, Glorious Fizz

Many people have commented on my Facebook account about my enjoying the odd (ahem) glass of champagne.  My comments have often been that it's Champagne Monday, Bubble Tuesday, Fizzy Friday, Sparkly Saturday or similar throughout the week... there's a reason for every day without too much thought or rhyming.

And yes I have been enjoying a glass or two... and I make absolutely no excuse for doing so.  I hope I'm not being showy or flashy...  I also am not being extravagant or outrageous... why?

Over the years I have been given many bottles of champagne, sparkly or fizz.  Some as a thank you, some as a gift and always because people know that I like fine wine and fizz.  However like many people I've put it away whilst saying that old familiar phrase 'I'll keep it for something special'....

Every day should be celebrated in some way.  With a glass of champagne; something fun and frivolous; a hug or a telephone conversation with someone you've not spoken with in a while; a shared joke; a dance in the rain; a jump in a balloon room; or a smile with a stranger... whatever YOU do to celebrate remember that every day is amazing and that each and every day YOU deserve something special.

If the past couple of years has shown me anything... it's something so simple...  that every day is special...  and I, for one, have learnt with every sip of champagne to be thankful for every day, for everyone in it and all that the day brings.

[PS  Soon the champagne stock will be depleted and I'll be posting pictures of sparkling water!] 

7^th August 2011 - Anniversary

I don't often talk about Mum anymore... or at least not out loud.  I do however go to dial her phone number and remember that she's no longer here.... or I find myself talking to her or asking her opinion and then worrying that I'm not doing things as she'd want them to be done, or more often get frustrated and pissed off that she's not here anymore.  I also get upset that she's not here to celebrate my achievements. 

I was recently nominated by two separate people for the Divine Woman Award 2011.  The two people who nominated me don't even know each other but know me - one from the US and one from the UK.  Astonishingly they also nominated me for slightly different reasons... one for my work within the cancer arena focusing on survivorship, patient involvement and support.  The other for my work within the cancer arena but more particularly for my phyllodes work - finding out more, probing and asking questions, sourcing new information and more importantly my helping others newly diagnosed and through our Facebook group 'Phyllodes Support Group'.  Divine Chocolate realised that I had been nominated twice and I was shortlisted and  invited, with a plus1, to the Finalists Reception with 5 other entrants.  I didn't win, but the lady who did was very deserving and amazing... as were the other finalists too.  I went to the Finalist Reception alone because the only person I really wanted to accompany me was my Mum and she's no longer here.  But I hope she looked down and was proud of me and why I had been nominated and why I was selected from all the entrants to be in the final 6.

Mum fought for more information on Multiple Sclerosis, more research, more progress, more support and more awareness... she used to drive us all nuts in her quest to help and find out more.  I knew why but I used to say to her to concentrate on herself rather than 'the cause' and get frustrated that right up until she was no longer able to use her fingers to write and use the computer, she would be writing to medics, politicians and health authorities with information, research or questions.  I now so understand why she did it and why it meant so much to her to know that she had tried to do something so that others behind her may not have to struggle with MS the way that she had.  She was determined to help find an answer as to why this dreadful disease existed and to find a way to relieve the symptoms for others.  I know that she will have made a difference with everything she did... I just hope that I can do so with Phyllodes too.

So Mum, 2 years ago today I watched you close your eyes and soon take your last breath.  I watched you peacefully slip away leaving behind your damaged body on this earth.  You'd had enough of the fight.  I know it was your choice to leave.  But I miss you so much.  Love you Mum.

27^th July 2011 - Checks

OK so there's a huge chunk of time missing from this journey... I've been busy.. some good, some not so good and I promise to update you on all that soon.

BUT, just thought I'd drop by to tell you that today I received the results of my latest follow up mammogram... Not sure why I was so nervous but to say I hardly slept last night would be an understatement! Today wasn't helped when I was taken into the 'bad news room' - there's one in every clinic around the world... And sat nervously for what seemed like hours before my consultant came in accompanied by a nurse (also not a good sign as usually they're there when bad news needs to be broken)... Can't tell you how relieved I was when my consultant (who is the best in the world) said all was clear. He then took the time to check I was ok, felt ok, wasn't worried and also queried the pains I constantly have - not bad but niggles and remind me what I've been through. Anyhow at the end of our chat he said he'd be happier if I continued on my course of follow up appointments of annual mammograms with 6 month interval of ultrasound checks.

Can't tell you how 'looked after' I feel and how, just knowing that I continue to be monitored takes away any anxiety I may have.

(oh and the nurse was there as she wanted to find out if I'd be happy to be part of a clinical trial looking at genetics and familial history for patients diagnosed with DCIS, which they found when they went in for clear margins following removal of my malignant phyllodes. Of course I'm happy to be in any clinical trial that may help others in the future)

Sooooooo I've had a couple of cheeky glasses of champers tonight.... Cos I could!  Xxx

3^rd March 2011 - I've got sooo much to tell you...

Gosh life has been so busy and full.  Not enough minutes in a day to be able to update you and do everything that I've been up to.  I promise to update you on bits and pieces very soon but first some quick summaries that I'll come back and fill in later.. I went to Scotland which combined with meetings, I met with both my brothers and their families and we scattered the last of Mum's ashes.  Duncan had found a spot overlooking Loch Lomond... quite an adventure getting there mid-winter and I'll expand on that when I pop back later. 

I was back home for 36 hours before heading off to Orlando, Florida and my second year at the Annual Conference for Young Women affected by breast cancer (now known as C4YW).  I learnt so much attending the seminars and workshops but mostly it's the community and support of being with people who really understand it.  Being my second year I was also able to talk to some of the newbies and help them too.  My oldest buddy, Jenny was there too and once again we roomed which allowed us time to gossip and talk about the old days and also openly talk about the past few years and its impact on us.  AND there were even more of my Phyllodes' sisters there.... I cannot tell you just how special and meaningful it is to be able to spend time with them, to give and receive a hug and to be able to talk about being diagnosed with this rare cancer. 

One of my sisters, Andrea Lambert was there this year.  We hadn't yet met in person but Andrea has been a constant support to me from the first moment Trish introduced me to the Phyllodes Facebook group.  I can't explain how much it meant to me to be able to give her a hug.

During the time together we all spoke about doing more advocacy and awareness of Phyllodes.  If having the Facebook group has taught us something it's simply that there are people out there who are diagnosed and it's not just us!  Andrea talked about doing a TV piece in conjunction with her husband's role as a hockey coach.  The piece was aired last night on Fox6.  Do take a look - click here  Andi is amazing, beautiful, strong and I'm proud to say, my friend.

9^th February 2011 - Life and this little unknown thing called Phyllodes

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?

4^th February 2011 - Breakthrough Breast Cancer

I am now back home after a couple of days with the team at Breakthrough Breast Cancer.  Every year they invite local and group voluntary representatives to an annual conference in their London office.  During the conference we listened to presentations about the charity and in particular their incredible research work that they have done over the previous year and are conducting in to both treatment and prevention of breast cancer.  We are asked for our feedback and participate in workshops about the charity, their work and also felt our input was valued. 

Breakthrough's pioneering work of PARP inhibitors has now led to over 50 clinical trials being instigated around the world and potentially could make a big difference for many thousands of cancer patients, not only for breast cancer.  Wouldn't it be a fantastic world if less people were ever diagnosed in the first place?  Particularly on a week when it is announced that the lifetime risk of getting breast cancer has risen from one woman in nine to one in eight in the UK.

Breakthrough also do some great work with their campaigning to make everyone 'breast aware' - as you know this is something that I never did and following my finding a lump will never know how long it had actually been there or perhaps if I'd found it earlier would it have been benign not malignant?  Simple - early detection saves lives.  Information can be found here and they even have a helpful iPhone app that will remind you to check and show you how.

I also learnt more about their campaigning and advocacy work.  Particularly key given the new changes proposed under the new government to the NHS and something that Breakthrough continue to lobby, discuss and challenge with the Government to ensure that breast cancer remains on the political agenda. 

At the risk of sounding like my own party political broadcast for Breakthrough, they do an incredible job but always need support.  That support maybe helping with lobbying, writing to your MP, keeping up to speed with changes, knowing about research, sponsorship and fundraising or simply telling others how to be breast aware.  Often Breakthrough may slip down the 'charity awareness' scale because they prefer to spend their big bucks on research rather than advertising (and I know that's where I'd like them to spend their money too), but they do play a vital role.  So if you have the opportunity please support them.

Also in attending the conference I am once again reminded by the passion and drive of people wanting to make a difference.  There were men and women at the conference who had been affected by breast cancer.  Each and everyone had their own story.  But one thing that everyone had in common was passion for life.  I'm honoured to meet with people like this and touched by each and every one.

4th February 2011 - Create a Life you Love Challenge

Join in the Create a life you love Challenge.... Doing something you love... Something that makes you want to bounce out of bed in the morning... something that makes you smile and feel alive...

All challenge entry fees are being donated to Living Beyond Diagnosis - an organisation hosting events for anyone affected by cancer. The first 3-day event is in November 2011 in London for anyone affected by breast cancer.

Register at http://createalifeyoulove.co.uk/

2nd February 2011 - Check ups

I am so pleased to tell you that today I had the results of this six monthly ultrasound check up and it's all GOOD news.  Can still see an area on the ultrasound that appeared in last check up but it's shrunk so they believe (from the mammogram and biopsy of last check) that it's scar tissue that is now disappearing slowly too. 

The consultant even had a suggestion to help with the pains that I still frequently get and that has worried me.... as I know from discussions with others and you will have read about, breast tissue has memories and the thought is that my breast tissue is just recreating the most recent pain when it should probably be just whinging a bit that it's cold or something!  Well the consultant suggested that I rub ibuleve gel on the painful area for a few consecutive days (following instructions depending on strength).  She believes that this may numb the nerve endings that have been cut and reduce/stop the pain.  I'm going to give it a go and if it works, tell everyone else that has also made comments about having post-op pain that the doctors say isn't a recurrence!  How fab would that be to be finally pain free and tumour free too?

31st January 2011 - Girlie weekend

Hehehe Millie and I headed off to Venice for 3 nights escape.  How fab is it to be able to hang out in a beautiful city with your friend and just chill... no husband, family, appointments or cancer to get in the way of a blissful, cultural and rich weekend away. 

Venice was stunning and down every alleyway a new adventure.  We walked and walked and explored and found fantastic little treats throughout.  Oh and our hotel was so gorgeous, comfortable and out of the way that we managed to sleep undisturbed until late - quite a treat for Millie.

14th January 2011 - (Nearly) all good news

Since the New Year I have already achieved a great deal with the organisation of the UK breast cancer event in November 2011.  There's still a long way to go but there have certainly been strides made in the right direction.  I also have a diary full of meetings and teleconferences with so many key people, organisations and charities.  The biggest aspect for me now is to obtain the charity registration status so that we can claim gift-aid on donations but also so that people (thank you to those who have offered) will be able to host fundraising events and collect the monies via JustGiving and the like.  There are also a number of exhibitors and sponsors who will of course need the charity registration number to comply with their internal requirements.  I cannot tell you how frustrating it is to be told that we have to raise £5k in order for them to consider the application, thereby proving we can raise funds.  It's also terrifically disheartening to think that it is a small sum but that I can't afford to donate this myself as it equates to nearly 3 months' salary from my savings!  However I do know the value of what I'm doing and the knowledge that this annual event can go on to help so many people by providing information, support and importantly community is something that I continue to believe in and strive toward.  I've not spoken to one person who has been touched by cancer that doesn't commend me in what I'm doing.

So, following a mailshot to family and friends last week, I was really rallied by the response.  I have received donations small and large from all around the globe, totalling just over £1,000.  Thank you to everyone who has chipped in and also for your encouragement and support - it means a great deal to me to know that you're backing me and also backing the event.  Thank you also to two of you who have set up monthly direct debits to contribute an amount each month - again a really big thank you.  If you wish to make a financial donation this can be done online via the PayPal link on www.LivingBeyondDiagnosis.com or send a cheque to me, payable to 'Living Beyond Diagnosis'. 

I also requested in my mailshot some help with some skills and services.  I will, for instance, need a printer who is able to produce marketing material for us, and administration help or event management expertise.  There are many aspects and I know I can't do it all, so if there are any willing hands or companies that are able to help with any aspect, I'd truly appreciate it.

Finally, I requested that my mailshot was forwarded to others who may be able to support the event, have access to corporate sponsorship, perhaps speak at the event, take an exhibitor stand etc etc.  We are, of course, only 6 steps away from anyone, so perhaps someone you know may know someone else etc.  Do talk about the event and direct people to the website for information.  Again I know that the event is great.. after all the US conference for young women affected by breast cancer is now in its 11th year and each year they have more people wanting to attend than there are places.  I just have to make the first event a success!

OK now for the not so good news.  You will remember that I told you about the lovely Trish… she was the first person I found with the same rare cancer and who introduced me to the Facebook group… I remember thinking that I was no longer alone and I think I slept for the first time in ages just knowing that.  Trish and I met at the US Conference in February last year and we're booked up to meet this year in Orlando… I can't wait.  Trish is amazing and encouraging and positive and has always been the first person I've told when I have a wobble about finding a new lump or feeling a pain etc.  She told me about a lump last week that she had found and today saw the doctor.  They've found a 2cm tumour.  Until it's removed and tested they won't know for certain if it's a recurrence of Phyllodes but given the speed at which it's grown, it is suspected.  I so, hope they're wrong.

It's hit me though as we were diagnosed at the same time, both malignant phyllodes and both in the same breast and had the same surgery.  Only difference was the malignancy and sadly, I won that prize for highest!  

Hey ho, my next scan and check up is in two weeks and then I get to escape on a girls weekend to Venice with the lovely Millie.  What a treat.