Dates

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?

Results

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?

Is it really a year?

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

Scans

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.

Where does all the time go?

Well apart from moving, decorating, cleaning and sorting in the garden, I’ve also been hard at work getting to grips with the huge goal that I set myself of the UK conference next year. I will update you more when things are firmed up but it is sooooo going to happen!!! I will, of course, be looking to you all for help, contacts, names and numbers so that I can get to the right people I need. I will also need help nearer the time with all sorts of tasks and at the event itself, will be looking for volunteers to help out with guiding attendees to the right places and generally helping out.

All this has been hindered and frustrated by my new phone/broadband provider managing to lose the network for 3 days. Do they not realise how much I need to be online or able to use the phone? aaagggh

Jolene update

My friend Jolene has today been travelling up to San Fran to see her team of doctors and hear about the medical trials they are proposing for her. She has done so very incredibly well after such major surgery however is now taking little steps (bone grafting was taken from her femur for her jaw) and has most of her tubes removed. She’s an awesome girl and an inspiration to us all.

Scheduled follow up appointments

I was due my ‘promised’ 12 week scan in the middle of July. I had a note in my diary but no appointment date/time. As it was due right in the middle of my moving to London and the million and one things that I had to do at the time, I figured that I’d chase it up only when I had a minute however should the appointment card appear, I’d rush to my scan. You guessed it, no appointment card appeared.

I have however been having little sharp pains which I’m hoping are due to moving and lifting so much stuff or perhaps I’ve bashed the wound. I’ve also been extremely tired and my mind tells me that I was like that before but I’m trying to override it by telling it that the ‘Lazy Gene’ is pushing for attention!

So I called them up. After having to dial a squillion different numbers within an automated system and getting frustrated when having pressed 1 for this and 4 for that and 2 for this and 8 for that, the options dried up and I couldn’t get to the hospital unit anyway! So I ended up with the PALS team (patient liaison) who, as usual, a) understood my frustration and b) managed it and found answers.

The answers however were not what I wanted to hear. They were told that ‘it had been decided’ that I was now only to be getting an annual mammogram.

Errr I don’t think so.

I was livid, upset and felt, once again alone. How can all my follow up scans be ‘cancelled’ and I not be informed or the issue discussed with me? My consultant it appears is also unaware of the radiographers decision as I have an appointment to get my results from him for the scan that they’re not going to give me!?!?

I’m really not sure medics understand the need for a follow up schedule for cancer patients. To have an agreed date in the diary of the next appointment, be it next week, next month or next year, means there feels there is some support and should there by any problems, we know that we’re seeing someone in x days. This reduces the anxiety and stress of the individual but also, surely makes easier planning for the medical teams.

After a lot of to-ing and fro-ing I was eventually ‘granted’ a scan. So 30th July is my next scan.

Thank you all – Jolene

I’m soooo very pleased to report that Jolene is doing well.  She’s out of ICU and in a private room.  There’s lots of work yet to do, not least learning to walk again as the graft was taken from her hip.    She’s been on highs and lows about what has happened but in a positive state of mind at the moment – as if Jolene was ever going to let Phyllodes get her!  Thank you for keeping Jolene in your thoughts and prayers – a little bit more please.

Will anyone ever understand Phyllodes?

When I was first diagnosed with a Phyllodes tumour, all the information I could find related to the tumours affecting the breast tissue.  Indeed the association is that Cystosarcoma Phyllodes is a breast cancer – it isn’t it’s a soft tissue sarcoma.  However there was always some comfort in the belief it was a breast cancer, surgeons know how to operate, support networks know how to relate, friends and family can compute what this means etc etc.  And for me, I believed the ‘rumours’ that it would only ever be in my breast tissue and therefore could be treated surgically.

As you will know from posts earlier this year, my comfort blanket of information was shattered when a friend from the US (Lynda) passed away when a new Phyllodes tumour grew in her brain.  My knowledge of phyllodes told me this was impossible but there was another part of me that knew that due to the rarity of Phyllodes, no one really knows.

This week another dear friend (again from the US and again whom I met in Atlanta) has had surgery to remove a Phyllodes tumour from her mouth.  She has undergone an 8 hour surgery to her mouth and jaw. She has just been woken and has a tracheotomy and will remain in hospital for 10 days or more.  She is unable to talk or walk and will be sent home with a feeding tube.  All this for someone who is 24 years of age and was told when she first saw the doctor that she was too young to have cancer.

Jolene is an incredible lady who has endured so many surgeries, treatments, drugs and trials but somehow always manages to laugh or joke around – Jolene’s tumour humour is legendary!  It’s rare that Jolene isn’t smiling broadly.

I tell you this for two reasons:

1/  Please keep Jolene in your thoughts and prayers.  She’s a fighter and the first thing she did when she woke from the operation was to ‘give cancer the bird’.  Feel free to shout out the war cry “Phuck Phyllodes“!
2/  The conference/event in London is for breast cancer survivors, not Phyllodes.  However as the surgeries, support and emotional and physical affects are the same, I would love the conference to also be a source of new friendships and support networks for my fellow rare Phyllodes survivors.  If it is at all possible, I also aim to have a keynote speaker at a workshop discussing Phyllodes.

I am reminded at times like this however that I’m blessed to have found such a wonderful support network of people affected by Phyllodes and whom support each other through our journeys.  As you know they were so terribly important to me during my difficult times and I’m now able to help others through theirs.  This website has been found whilst trawling the internet, by a number of newly diagnosed ladies and I’m so proud that I put it together to help, even just one.  On the other hand I am always saddened when I receive an email from someone else newly diagnosed.  The most common things I hear are that their doctors haven’t taken them seriously; have told them their too young to have cancer (sometimes sending them home previously); that Phyllodes isn’t Cancer; that they don’t know about Phyllodes; that they can wait for surgery despite the tumour’s quick growth; and more… Sadly the stories are often the same and incredibly hard to equate when newly diagnosed.

If you get the chance to ever mention Phyllodes, please do so… I’d love to think that sometime soon, someone will be newly diagnosed and hear the doctor say ‘I know about Phyllodes’.

Your new normal

I spoke in February of a workshop that I had attended in the US that had been open and frank about our ‘new normal’ and coming to terms with new body shape and surgery etc.  The majority of the points made had crossed my mind and worried me, in some why or another.  Some I’m yet to tackle but knowing that my concerns are not unique.  If you have the time, do listen to the whole workshop, some of it may shock you but all of it is useful when you’re facing these concerns.  It may also be useful for your partners or loved ones to listen to too so that they may understand what you’re unable to say.  Thank you Lillie Shockney.