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.

As most of you know I’m rubbish at dates. Yes I could be referring to dates with the opposite sex but what I actually mean is dates on a calendar – thanks to all those of you who immediately worried about my continued single status 😉

I’ve always had to rely on a calender or diary. In the good old days I’d never survive without a diary in my handbag in which to jot down where and when I had to be somewhere or do something. Latterly it was via Outlook at my place of work and then smartphones or iPhone. If I didn’t put the entry into the diary, it would be forgotten moments later and I’d neglect to turn up or be running late as I’d only just remembered. Once a date had passed I’d have very little recollection of what day of the week we met, let alone a date or year. Yes, sometimes this may have been alcohol induced amnesia but more often just because once it’s done, it’s done.

Those of you for whom I should remember birthdays will know how utterly rubbish I am at that too – unless it’s in my diary or you remind me. There are children (neices, nephews or just my ‘extra’ children) who have ‘late’ or ‘early’ birthday presents and know that Auntie Anna extends birthdays so that she’s never actually late!

What’s been strange about this journey with cancer is that I remember all the dates. Not only do I remember them at the time, I know when they’re coming up, where I was, what was said, what time the appointment was and how I felt. Not because I have re-read this but just because all of a sudden these dates are significant. I find it eerie that the date of my doctors appointment when I was referred for scans is etched deeper than the year I went to college, started work or moved into my first flat. The date that I found the lump smacked me in the face a year on, out of nowhere. The date I was told I had cancer hurts and I’m sure the date that I was told that the cancer was in fact a malignant rare cancer known as Phyllodes will no doubt be an ‘odd’ day too.

For someone who truly has difficulty remembering her own birthday, I find it astonishing that every aspect of my cancer journey is etched deeply into my ‘internal’ calendar. Will I ever be able to live these dates without remembering?

To say I’m relieved would be an understatement. For all my joking around about plastercast boobs and ‘feeling a right tit’, I was a tad worried about having to have the extra test and biopsies and what it all means. It was never far from my mind and although you’ve all tried hard to distract me (and some of you have done very well) my mind has kept coming back to the ‘what if’s’. I still however agree with my consultant’s view of preparing or the worst but hoping for the best (despite restless nights as I hit ‘play’ on the future scenarios ahead) – but it has meant that the euphoric high of being told that it is scar tissue and I’m OK has been even more surprising and therefore more exciting – I can’t stop grinning (Black Eyed Peas “…Today’s gonna be a good day” was playing as we drove into the hospital car park – NLPers will understand why that was a good omen).

I might however still have to do the plastercast thing! 😉

So, I don’t need to go back until January 2011 for a ‘regular’ ultrasound scan – YAY!

I can really start getting on with my life, getting my fitness back, losing weight, plotting and planning for a future and, importantly, putting heart and soul into getting the UK conference for people affected by breast cancer onto the annual agenda. I’ve been a little distracted this past few weeks and now have no blinking excuse! Pull your finger out Wallace! This time it really does feel like I’m OK. It really does feel that I have ‘done with’ cancer. It really does feel like I’ve been given another chance.

Huge thank you to Millie, Mark, Ed ad Abi for their continued support and… I did promise you I’d stop ‘growing’ stuff and I have… do I get a prize? Oh yes, champagne anyone?

Mum,

It was a year ago today that I received a call from Roli to ask me to come quickly.

I remember starting my day with an early text from Dunc to tell me that I had a new neice, Celeste and the joy that that new life will bring. Dunc asking how early I thought he could ring you to tell you the news that you’d asked for every day. I can remember also knowing that you’d been waiting to know that all was well with the arrival of your new grandchild. I remember being in my NLP training and somehow knew my phone was ringing in my bag despite it being on silent. I remember hearing the tone of Roli’s voice and knowing what he had to tell me. I remember wishing I’d been able to park closer and rushing to get to you. I remember driving at speed down an impossibly empty M4 motorway. I remember arriving at your house. I remember the house feeling calm and peaceful. I remember seeing the pictures that had been emailed from my little bro and that you’d been able to see of your new granddaughter and seeing you smile at the pictures. I remember the look in your eyes as you looked at me and you said your goodbyes.

During the next few hours before you left us, Roli and I sat with you, talked to you and also to each other – that was a special time. I remember the sound of comfortable silence and feeling of calm. I remember knowing that you had decided it was time. I remember knowing that you were now in control and, as in life, your death was going to be on your terms and in your own time too.

Thank you for making it easier for me (us all, I think) by telling us what you wanted to do when the time came. Thank you for being honest and open with us about your wishes should the Multiple Sclerosis progress. I remember when you gave us your ‘living will’ many many years ago feeling shocked and horrified that it would ever be needed but it helped to understand your wishes.

I hope we did it all right – you had ‘we look on the bright side’ as we left the church after your funeral (and yes there were a few of your guests aghast!). AND, as you’d longed for, and as I reasoned that they might not do, your grandchildren (all of them) did read ‘On the Ning Nang Nong’ in church at your service – and you were right, they loved reading something so ridiculous for a Granny that they adored.

BUT it’s a year since you left me. It’s a year since I’ve been able to talk to you and have you tell me not to be so bloody stupid. It’s a year and so much has happened and so many times I have reached for the phone to call you. I’ve needed you to hold my hand and tell me it’ll be OK or more than likely, ‘to just get on with it’. But I hear your voice sometimes as I do something or search for an answer and yes I still answer back!

Miss you Mum.

PS Are you dancing now and as you twirl and is that emerald green dress swishing and catching the light?

To Celeste

Your arrival into the world was so longed for by us all and so very much by your granny. Every day for weeks she’d been asking me if there was any news of you. Every time the phone rang you could see granny’s eyes light up with anticipation. When granny heard the news you’d arrived and were perfect she made her final preparations for her exit from this world. When she saw photographs of you which were emailed to her a few hours after your arrival, her face and eyes lit up with love.

Granny would also say that although your arrival in the world was shared, YOUR birth-day is your own day and you will make your life your own in your own special way. Be strong and be individual but always rememberer to smile and cause a little mischief!

Happy Birthday Celeste.

Auntie Anna
xxx

OK today’s the day I get to go for my 12 week check up scan that I had to fight so hard to get (despite it already being agreed!).

I found myself yesterday and last night in tears and feeling dreadful. Weird how anxious I get about the scans and yet I’m sure there’s nothing to worry about. I wonder ‘will I always be this anxious about my follow-up scans?’

I also can’t imagine not having them, as at least I get the chance to be checked again and to ensure that there’s no return of any Phyllodes but also to see if the seroma (fluid build-up) is dissolving. I hope so, because the idea of any more surgery (even to just put a drain in) is not on my to-do list!

Results appointment in a couple of weeks with my lovely oncologist who will no doubt call me Miss Lumpy Bumpy!! Awww bless him.